the lion's den

I was asked tonight; how have I taught my children courage? what does it take to be a courageous parent?

I want to ask: Do we have a choice?

Those of us with diabetic children; do we really have a choice? Can we fall apart in front of our little sweeties that are looking up to us and depend on us to keep them healthy, to keep them alive?

If we aren't sure, how can they be sure? If we don't tell them that they will survive and be okay? who will?

Our little children carrying a burden that they shouldn't have to carry, were never given the choice to be brave. they just had to be.

people ask me how she is handling the shots. people say that someday she should get used to the shots and it will get better.

she already is handling the shots well. again, she didn't have a choice whether she would tolerate the shots well or not.

there was a brief moment that we were sitting in our pediatrician's check up room waiting to see our doctor about her bladder infection. that brief moment while we sat waiting for the urine results. we sat in the room. myself on the small cushioned chair with the hard metal back and my sweetie on my lap. that brief moment that was to be her last before the new identity was placed on her. As soon as the doctor saw the numbers in her urine; the very first meter appeared. with her first finger prick to check her blood sugar level. and from then on, it never stopped.

At the arrival at the hospital, she was immediately finger pricked again, then several blood tests were performed, then an IV was inserted, then insulin shots were started. and here we are today.

Insulin shots were started before her official diagnosis was confirmed. They knew; but we were still in shock, crisis mode, waiting to find out if they were wrong. but those insulin shots confirmed it. we just weren't as convinced yet. we were still on the naive, hopeful side.

so how is it that I am courageous? How do I hold it together? the alternative is unthinkable. you, as a parent. me, as a parent. want to stay on the hopeful side. we choose to be courageous even in bleek situations because we will always keep our hope for our child to survive.

I recently read an article about a boy that was terminally ill in the hospital and the insurance or doctors recommended to discontinue life support. Basically the insurance decided that it was too expensive to continue to keep him alive. The parents didn't want to discontinue life support. This became quite a news story, raising the question, who has the right to decide when all hope is gone. Again, courageous parents because they believed that their child could still live. they weren't ready to give up.

Again, I think outsiders label this as courageous because they don't want to go through what you are. they want your situation to remain foreign and insurmountable and that you must be a superhero, because that way it remains untouchable for them.

When my other daughter had awakened from surgery to find herself in a body cast, she didn't have a choice either. she had to be brave. There were times when she got angry and wanted out of her cast and tried in her 3 year old understanding to pry her cast off with her fingers. But when she had tobe propped in a wheel chair and taken to the doctor's office, she requested her special blanky, her jacket, her mittens, and motioned to go. she actually earned the nickname "e the brave" during that time period, because it was amazing what she had to endure. But what amazes me is how kids adapt to their circumstances. By the end of the time in her cast, she was propped on the floor on a blanket doing puzzles with Gramma. we also figured out that we could lay her on her front side on the kitchen counter and let her play in the sink water. Something that may not normally be really exciting for a child but now it was.

Their circumstances have changed and they have to adapt to survive. The basic will to survive makes us courageous. This courage is our hope.

Daniel had to first enter the Lion's den to learn that he would indeed be okay and live to tell about it.

In the Bible, Daniel was brave because he put God first in his life. Some jealous men made a law that it was illegal to pray. Daniel broke the law because he honored God's law first. He was brave because he was doing what was right in his mind. He was following God's law.

He then found himself sentenced to ending his life in a den full of hungry lions. He knew that he was honoring God so he bravely entered his soon to be fate. But then God did something amazing and shut the mouths of the lions! The lions couldn't harm Daniel! Daniel was now in what he thought was a situation that could have ended horribly for him, but it didn't! He now could look back on his composure and be proud of himself that he didn't enter kicking and screaming. He walked in with faith and was rewarded.

Kind of like a diabetes diagnosis. at some point, you realize that it can be manageable. there are always dangers lurking around you but a lot of times those dangers have been tamed and disciplined so that we can sit down and rest right beside them.

We never know what trials we may be asked to face but with faith we will soon learn that we can face them all.

a drink of milk

I was reminded tonight of when my sweetie was in the NICU.

She was born 7 weeks early. 4 pounds 15 ounces. actually a good size for 7 weeks early. she had to learn to eat. she had a tube that ran through her nose down to her tummy. we would use a syringe to put milk into her tubing to feed her. as she got better at tolerating the milk, she progressed to a little bottle.

she had to be fed on a strict schedule in the NICU. we would arrive to feed her. we would wash our hands then get her from her sleep and change her diaper. then we would sit down and try to keep her awake to drink. we had to watch how much she drank and keep waking her to eat. we would summon the nurse to watch us and make sure that she had had enough.

when the nurse felt she had drank enough, we would then burp her and cuddle her and tuck her back into her bassinet. several wires and monitors still attached. she would be reconnected to machines and properly swaddled and propped and then left to sleep again.

Tonight, I was doing the same thing with my now, 3 1/2 year old daughter. same daughter, just 3 1/2 years later. now diabetic. no longer a preemie.

I went to check her readings at 1130 pm. she was 132. Right now if she is under 180, we are supposed to give her a snack to safely ensure her slumber through the rest of the night.

She is sleeping soundly, all snuggled in her blankets. Last night she did not want to stay in bed, tonight she fell sound asleep, quickly. I hate to disturb her. she agrees.

I gently rub her back and try sitting her up to drink some milk. I place the cup to her lips and the cup slides right off. she slumps in my arms and longs to be laid back down again.

I lay her back down and rub her back, trying to wake her a bit. I hold the cup to her mouth again. she takes a few sips and any willingness to drink leaves her again. She had drank about 2 ounces, if I am lucky. That is about 3 carbs. Not close to the 15 gram snack she should have to raise her blood sugar levels.

what am I to do? The concern is: if I leave her, she could drop further in the night and we would be asleep. so I type. I am waiting to check her again. and try milk again. I debate taking in apple juice, because less quantity would be needed to raise her sugar levels. But as we know now, simple sugar would not sustain her through the night. quick fix and back right where we started in an hour. and 132 is not low. It's just not as high as we want her for us to sleep comfortably for the rest of the night.

I wanted to watch Anthony Bourdain, so I think I will start the show and wait to check her again...this is why I am so tired...my husband is sound asleep, and here I am waiting and typing.

I watch the Duggars tonight. 19 children. On this episode, several of their children were sick at once. Mom Michelle said that she had to give love to each sick child and then go carefully take care of the youngest baby who was a preemie too. There preemie just turned one. She was born around 23 weeks. I think. so she still looks awfully little for one.

I thought, "How does she do it with 19 children?" But she has a lot of teenage helpers with all of the little ones. That's how she does it. Lots of teenagers still at home being homeschooled helping with chores and taking care of the younger kids.

well, its now midnight. she won't drink anymore milk but I checked her again and she miraculously jumped to 150. closer. under 130 is mandatory 15 g. under 180, good idea. she is getting close.

Now I want to go to bed. I am getting really tired. Eyes are starting to squint at computer screen. haven't been able to change tv channel yet. husband left on some fishing expedition show. not deadliest catch but something on planet earth.

I'm going to attempt to get her to take another drink. wish me luck.

I'm back. she, at first, refused. Then she finally took the cup from me and took a few good sips. I will recheck her in fifteen more minutes.

171.

close enough for government work.

I'm going to bed.

Manna

"If you told God on your knees that you had reached an impasse and...were handing it over to him, then leave it with him. Do not go to the first Christian you meet and say, "You know, I have an awful problem; I don't know what to do." Leave it with God, and go on the watch-tower."
- D. Martyn LLoyd Jones

I read this in my Bible study the other day and it came back to mind today. I am feeling overwhelmed again. I have been walking around heavily sighing again. sighing is me trying to shed some of the weight I carry.

I pray everyday, every hour, every chance I get for the Lord to take my concerns and requests and weave them into what they should be. But now, I wait for answers.

when we don't hear from God, In Habakkuk 1:5, it says "Look among the nations! Observe! Be astonished! wonder! Because I am doing something in your days- you would not believe if you were told." We are told to look around us and see God's work. to be reassured that he is working around us and in our lives even if we don't have the answers to our prayers, yet.

Beth Moore, a great Christian speaker, told of how she had a porch where she would get down on her knees and place her head to the floor to prostrate before the Lord, in humility and awe and to place her self in a position to hear the Lord speak.

I wish I had an enclosed porch in my backyard where I could lay out a prayer rug and watch the sunrise on a warm summer day and just commune with the Lord. When you hear God and see God work, life is SO exciting! You can't wait to see what God is going to do next!

This is something I treasured about living in India. Most of the country is Hindu or Muslim. The focus on their gods is amazing. Every taxi cab has a picture or pictures of their Hindu gods posted on their dashboard.

If you are up early in the morning, you can observe local people walking down the street to the nearest temple to worship before they start their day.

In Muslim areas, there is a call to prayer five times a day. Nothing is more beautiful on a warm afternoon in the desert for everything to come to a standstill and you hear a call to prayer sent over the loud speakers in town in Arabic. It's beautiful. Amazing. India has a culture where daily life is structured around their faith.

The acknowledgement of a god or gods is seen and expected everywhere you go. You can't find an atheist corner.

It's easy to get busy in our modern society and forget all about God.

My life feels like a tower of blocks right now. a new block is added. God doesn't give us more than we can handle yet I haven't seen any resolution yet for several of my concerns.

Maybe God is laying out the foundation right now and then to reveal solutions. Disperse some blocks. make the structure more ornate, spread out like a bridge from a tower.

I am only one person carrying the needs of five kids, while my husband is at work. Each one has their own needs. I feel like, Moses again, Jonah, Joseph. I am not equipped for this?! I have my own ideas!! and why am I here?! I'm ready to move on!! All of our own desires. Our will not His.

The Lord has His plans. He is orchestrating them. I pray for a glimpse of what he is doing and again a miracle blessing of relief.

Manna.

My daughter asked today, "what is the bread that comes from Heaven?"

manna.

she asked, "Can we make some?"

"I think that is from God.", I say. God's sustenance.

how apropo.

Jeremiah 29:11

I realized today that I am still in denial.

I was looking at another mom's blog site about her diabetic daughter. She had produced a video about diabetes awareness. She participated with her family in a Walk for a Cure for Diabetes. She had so much information and connections about diabetes on her site.

I realized that my focus has been on just surviving and trying to manage diabetes these past five weeks. I want everyone's focus on us. I haven't been advocating or proactive or involved my daughter in any information about Diabetes awareness or fundraising, or a hope for a cure.

Of course, my daughter is only 3. Her understanding is still limited. She willingly hands me her finger when I need to test her and she knows that she can't eat certain foods at certain times.

Her sister was looking at the other blog with me and she said "You mean there might be a cure for diabetes? Sister wouldn't have diabetes anymore?!"

Tears well up in my eyes.

"yes" I say. "that's why people are raising money and doctors are researching for a cure. "

I hadn't even begun to think about fundraising or walking towards a cure. I feel like I still have one foot in the door and one out. I feel like immediate crisis is over and I'm ready to return to our normal life. maybe soon, this will all go away.

The more I talk to other Diabetics the more it becomes real.

It's like a woman fighting for civil rights years ago. Trying to get into top colleges and be independent and vote and in the process, a lot of women lost their identity or tried to hide their female attributes in order to succeed and not be pushed down or held back because years ago, to be a woman was to be less. We made great strides but forgot what it was to be a woman in our quest to succeed.

or at least, I found myself doing that when I was younger because I grew up with only brothers. I had decided that I was going to be as tough as them and as smart as them too. I would never be held down because I was a female.

well now, we have diabetes. I made a choice that we would beat this and succeed and carry on with homeschooling, and financial struggles, and tight quarters. But it just became one more issue thrown onto the pile.

I didn't want to acknowledge what it was, just plough through it. and eventually it would go away.

I haven't acknowledged yet what Diabetes is or even read the paperwork that the doctor gave to me at the hospital. I just took notes and followed directions. that's it. I don't have time to read or research this. what will that change? just give me the directions and I will follow them.

I have been cheating us and my daughter. Diabetes has become a black cloud hanging over us.

I spent so many years advocating for the understanding of learning disabilities and that they weren't a disadvantage just a new way of doing things or seeing things.

exactly.

that needs to be applied now.

my daughter needs to know how her body works now and that she can still thrive and that she is still wonderful, not defective.

we need to be proud that we ARE a family of diabetes and that we can succeed and embrace it.

God gives us all new challenges and different experiences. He knows the experiences that we are to face. He has us develop different skills and knowledge to share with others. Nothing is new to Him. He forsaw it. He equipped us.

I just had no warning this time. or maybe my eyes were shut. God usually warns me of things. I missed the comment that my mom made to my oldest daughter. the comment of "this couldn't be diabetes, could it?" I had only heard the bladder infection comment. THAT I was prepared for. nobody had said anything to me about a chronic disease.

I was the one that had taken her to the doctor for the check up. I was the one given the urgent news to act on. I was the one that needed to be prepared and forewarned!!

I am someone that God speaks to through dreams. He speaks in other ways too, but I have had several dreams of the future in the past. Lately, I have been having several deja vu moments that I have realized are flashes of dreams that I have had. dreams of the very events that I am witnessing today. just little flashes. pieces of dreams that I had a while ago. mundane flashes. making a peanut butter sandwich for my daughter. having my son tested for speech. reading a blog reply about diabetes. I've begun piecing images together in my mind, and I think a lot of these stem from the same dream. A dream I did not understand long ago but suddenly lots of pieces of it are coming true.

This is how God works in my life. He shows me and directs me of my paths in my dreams. I know he is reassuring me that I am in his will right now and now I see that he had forewarned me. I just didn't understand what it meant at the time. Just as in the Bible. So many prophets were given dreams that were to come true much later on. God gives the vision. He is in control. It is for us to follow, in his time.

This is starting to become reassuring for me. That God has laid this out for me. I know he set several circumstances up for us to be prepared for this life changing event. He helped us pay our bills and provided friends down the street. Some things I still haven't figured out. But with his help, I will learn to take a new outlook on our life and keep moving forward with Him.

It's ironic, a year ago, I found a Bible verse that I really wanted to paint at the top of the wall in my shower. That is my prayer closet. my alone time. I pray as I clean. This verse just keeps speaking to me over and over these days and again, that is God.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11.

the special blanky

my little sweetie is not being much of a sweetie tonight. Tonight she is being a rebellious three year old. She won't stay in bed. darn that day light savings. and the guard rail we recently took down. and her fast little legs, and her night owl personality.

Her numbers were good when she first went to bed. in the 200's. she had a small snack of milk and some crackers. not enough carbs for insulin. however, after all of this running, she is probably due for another snack.

I took her special blanky. actually she gave it to me. I told her that if she got up again, I would take her blanky from her. she walked out and handed it me, saying "I don't need this." and proceeded to get up another 27 times. oops. 28.

now she wants her blanky back. I told her that she has to stay put to get her blanky back.

we shall see.

one one thousand. two one thousand. three one thousand. so far so good.

I just gave her back her blanky. so far she has stayed. as I exited her room, and entered the livingroom, our mama cat was sitting directly in my path staring me down.

"what?!?" I said. or thought loudly.

Is she disappointed in my parenting? Does she dislike Dr. Ferber? or is she just looking for food in her bowl?

oh. food in her bowl.

I knew a woman that would have told me to just cosleep and all of these troubles would go away. until the one night I don't want to go to bed when my children do. Then I have crazy kids running around the house while I blog?

We followed attachment parenting when my teenager was little. that lasted until she was 3. her bedtime got later and later and she would only nap if she were in a car being driven around the block several times.

with one child, we had lost control.

we now have five. and we don't really have the luxury or energy more importantly, to cater to everyone of their desires.

I'm not sure how a diabetic child would do in a child led home anyways. what if they just want that ice cream sundae no matter what? do we stand firm or give in?

Being that I am the adult in charge, I stand firm.

she is still in bed. soon I will have to check her again. hopefully her numbers will be good. or moderate. she has been in the 170's lately, which is good. I have been staying up until midnight to check her, the past several nights and am tired. hoping husband will take midnight duty tonight. of course, it's already 930 and I still need to watch the American Idol results. This is how it becomes my job everynight. I'm up anyways. catching up on all my missed activities during the day while I was taking care of the kids.

I wanted to go out for a coffee tonight, but husband beat me to it. so I brewed coffee but biscottis are all gone. argh.

today is a day I could use a biscotti or ice cream.

It's been a long day ending with a longer night.

still peace and quiet. maybe she will finally give in and go to sleep.

we spend so much time grieving for the loss of her innocence and childhood and yet some nights just want her to go to sleep so I can sit down uninterrupted. I care but also am human and need a break.

I was thinking the difference with diabetes and some other diagnosis is that diabetes is a 24 hour concern. we are always exhausted now. you can't just forget about it at 730 pm and start a new day at 7 am. you have to check her at least once through the night and make sure and calculate and plan for how her body will do and survive the 11, 12 hours of sleep.

you can't ever neglect this disease.

If you know nothing about diabetes, you just don't know how big of a commitment this is.

It is a constant roller coaster.

with a special blanky attached.

and yes, she is finally asleep...

The Pharmacy

The computer generated message on the cash register at the pharmacy read "Have a nice day".
I was picking up four vials of insulin, alcohol wipes, and a sharpie container. "Have a nice day".

really?

I wanted to tell everyone waiting in that long line that was watching me, "These are for a 3 year old little girl! My daughter has diabetes! juvenile diabetes! A disease! I'm not just picking up cold medicine! Stop silently telling me to hurry up! I waited for my turn! I need to rush home and make sure my daughter is okay again! It's snack time and I'm not there to check her. "

Entering the pharmacy, always brings back reality quickly. Sometimes, I can go shopping now and know that my daughter is safe under my husband's care. I can briefly forget the burden that we carry. I can be normal for just a few minutes.

But holding my insurance card and knowing that as soon as my daughter's prescription pops up on the computer screen, any chance at being normal, evaporates. The clerk doesn't state the obvious. She just asks me how many vials I would like? She asks me how many units does she take? She doesn't take a moment to offer grief counseling or show empathy or sympathy for me or my daughter. Maybe this is familiar to her. Maybe I am the fifth mom of a diabetic child she has seen today. But for me, I am only one. 100% of my world has changed. It follows me like a cloud that won't ever blow away. Just once in a while the sun shines through the cloud, so I can't see it.

When I was reading through another mom's blog about her diabetic child, I saw a banner on her blog that stated "If a diabetic child doesn't have insulin for a week, they will die." That's how serious this disease is. How fragile, their little bodies are. If we lived somewhere that diabetes wasn't diagnosed, our daughter would have died.

Someone asked a diabetic woman on facebook, why she is always mentioning death and needles? Because it is our reality. The person that dared ask such an insensitive question doesn't live with this reality and therefore doesn't have to think about death and needles just as we didn't prior to diagnosis. It's like asking a cancer patient why they are always talking about chemotherapy and operations for tumor removals. It's their reality. why should they go through this alone? why should we?

I found one more organization today on the computer called Starlight Foundation. They help families that have children with chronic illnesses. They state that "they help put normal childhood back into the child's childhood." I looked over at my little, petite, sweetie pie and said the words "juvenile diabetes" to my self. quietly, inside my head. The words melted on top of her and took shape becoming her identity. "How can this be possible? How can my daughter have juvenile diabetes?!"

It's been five weeks now. Five long years. fifty trillion, gazillion, long years. She was diagnosed on February 15. The day after we made valentine cookies for Valentine's day. Hours after she ate one of her decorated cookies. I told the nurse that her numbers could be high because she had just eaten a large sugar cookie. The nurse smiled a knowing smile and left the room.

Forever, I will look at valentine's day as a sad, bittersweet, holiday. It will always bring back the trauma and reality of me innocently taking her to a doctor's appointment. Thinking she was okay and that I was being overly cautious. She had said goodbye to her brothers and sisters and innocently trusted me to take her to an appointment and bring her back home again.

It's only been five weeks and in some ways have incorporated her routines into our routines. But by dealing with everything we have pushed our feelings aside and when I find myself back in line at the pharmacy that looks so much like the pharmacy in the hospital that made everything a reality, I find myself wanting to tell the stranger next to me and reach out for a hug and cry.

A donation button

I have added a donation button on our page in case anyone is moved by our stories and feels moved to help us.

We are a family of 7. We have a 17 year old heading off to college next year, a 6 year old, 3 year old twins, and a 1 year old. My husband works full time with overtime as a technician. I am a credentialed special education teacher. we were both working full time and doing well until I found out I was pregnant with our twins.

I had to go on medical leave during my pregnancy due to a very difficult pregnancy. I was placed on bed rest and eventually after a week stay in the hospital, delivered our babies at 33 weeks. One baby had to stay in the NICU for 4 weeks and one baby for two weeks.

After they came home from the hospital, one month later, our 3 year old, fell from a play structure at her preschool and suffered from a break to her femur, landing her in a body cast for two months. During this time period, my husband was fired from his job for missing too much work!

God sustained us and many people in our community and church reached out to help us. They provided meals and gifts for our daughter, housecleaning, and relief. Our home nurse even took up a collection for us and brought Christmas gifts! She even donated her time when our insurance wouldn't cover future visits. A horrible time turned into an amazing time to see God work.

After we got through this tough time period and recovered, my husband was rehired by his company at a different location and we began to get on our feet again. And then out of the blue, I found out I was pregnant again! No small miracle. It was our first natural pregnancy in 16 years! We had required medical help to have our 6 year old and the twins. We were a couple that suffered from secondary infertility.

Not only could I not return to work again due to my pregnancy but our house was growing smaller. We only live in a three bedroom house. We actually sent off a video audition to the tv show Extreme Home makeover to help add a bedroom to our house. We weren't chosen.

The pregnancy went well and our baby was born healthy and full term. I began to think about returning to work again and now our 3 year old daughter was diagnosed with type 1 diabetes. We had also decided earlier this year to homeschool our 6 year old due to her not being ready for first grade this year. She has also required speech therapy and was delayed a bit do to her hold back when she was 3 with her broken leg. Life had briefly stopped for her.

What we also see now too is that our twins are delayed in their speech. They have both just been approved for speech services too. Oh yeah and our teenager! Now a days, she keeps it undercover that she has Asperger's syndrome. I am a busy mom. and holding it together.

We work really hard and provide for our family but we have had some really tight spots in the past 4 years and again if anyone feels moved to help us, we would really appreciate it. Our greatest needs are: trying to afford tuition for our 6 year old to reenter school again next year, paying off more of our debt incurred during the period of my husband's unemployment and building our extra bedroom because we still have two kids sharing a room with us!

thanks again.

Asperger's syndrome

My daughter is sitting behind me, looking over my shoulder, as I type. She is searching Asperger's syndrome on the internet trying to find information about scholarships. She said that she is glad that she is finally diagnosed but also doesn't like to tell people. People treat her differently when they hear the title that is now attached to her. She was just officially diagnosed four months ago. It has been a life long search and a relief to at long last have a title, an explanation, a reason for the way she is; but also a label.

As soon as she entered kindergarten, we knew something was different. She took longer than the other kids to carefully cut out her pictures and glue them perfectly together. The class would carry on to story time and recess and she would still be finishing her project. She was smart. very smart. smartest in the class by far. but always the last to finish. she knew how to cut well and glue well and follow directions, but she would enter her own world while she did her project and aim at perfection. Her artwork was amazing and detailed but always at the cost of other activities.

When I consulted with a doctor about her inability to move on to other tasks, he decided with a filled out questionaire that ADD was the culprit. She couldn't pay attention. The teacher agreed that focus was hard for her yet she could focus for hours on what interested her.

We tried medication but there were side effects. unpleasant side effects. mood swings and loss of appetite. She on her own decided that not paying attention to boring material was better than not enjoying dinner.

Then there was also sensory issues. I was watching a pbs special one night about a little girl that wouldn't let her mom brush her hair. it hurt too much. no matter how careful her mother was, it hurt. and then there were the tags in the backs of shirts and starched skirts and socks with stitching! suddenly everything caused her body to set off an alarm! that was my daughter!

I began to read a lot on different disabilities in children and disorders. Everytime I came to autism, my daughter never fit in the check boxes, but there were pieces.

We spoke with school psychologists several times because classwork was easy but never getting finished and this affected her grades. I was thought to be a permissive mother by some, raising a lazy child that got away without learning responsibility. That was so far from the truth. My daughter worked harder than any other kid I knew. In fact, she rarely had free time because her written work took so much more time than it should have.

Finally one day, we spoke with our new pediatrician about our concerns and she recommended an educational psychologist. My daughter desperately wanted a diagnosis to know that she wasn't crazy. to know there was something behind her struggles. how could she be so smart, yet feel so stupid?

She met with the psychologist and went over with him, her findings, her thoughts, my findings, my thoughts, and they read some materials together. He agreed with her, at long last, no. not ADD, but yes. Asperger's syndrome.

big sigh of relief.

mixed emotion.

a label, yes. misunderstood by others, possible judgement, but validation.

He then called me, later that day, to share his findings with me.

First thing he said? "I want to congratulate you on doing a fantastic job raising your daughter."

a PhD, a psychologist, had not only just validated her struggles, but also my challenges over the years of advocating for her with a variety of teachers and some judgemental parents.

where do we go from here?

I had already practiced many interventions over the years and behavior therapy, and read countless books. we had already overcome lots of sensory issues, anxieties, social situations.

now, at long last, it was just a diagnosis.

she is now deciding on which college she wants to attend. she has come so far. she is independent, confident, social, and adjusts well.

yet there is still not much information on Asperger's syndrome. She was looking for scholarships online and not finding many.

She is planning on studying psychology and hopefully researching Autism.

Now that she knows what caused her struggle she wants to educate others.

It is not a lazy disease.

A Rainy Day

Splash, little girl

Splash, watch the water whirl
Dance in the rain little girl
The whirl is in the little girl
Whirl and splash little girl.
by Karen

Today, she got to play in the rain! splashing in puddles is one of her favorite things to do! She also got to go to church today, which she loves too. They have a preschool Sunday school class that she and her brother get to attend together. We leave her with her special water and cheese for her snack when the rest of the kids get crackers and juice. so far, she is okay with that.

I called the doctor last night and went over numbers with her for awhile. The past two days, she was having lows again and at midnight she was running high. we agreed to adjust her insulin dose at dinner and add insulin at afternoon snack and bedtime snack to insure her not going so high at night.

so far today, her numbers were good. I did make sure to check her right after she came in from the rain since yesterday she dropped so low after playing outside. She was okay, 103.

Tonight, we goofed a bit and she was given twice the insulin she needed at dinner. that was an accident by someone in this house. (no names will be given). luckily, we checked her at bedtime snack and she was 95, then she had a snack and she was okay for the night. currently she is asleep.

off the rollercoaster for one day.

back in touch with the doctor.

kind of like super nanny. she teaches the parents for a week then leaves for a few days then returns to assess the damage.

I don't know, unruly children or badly managed diabetic? well not badly managed, but a few lower lows and higher highs. well, one a parent can be blamed for, the other is some chemistry. okay, nevermind, us diabetic parents don't want to be compared to neglectful or permissive or overcontrolling parents. super nanny is human. she guides but is not foolproof.

we are like doctors or nurses. we do our best. sometimes we make mistakes but we are dedicated and work hard and relentlessly.

I'm listening to my teenager and husband discuss the pros and cons of the colleges she is considering attending. She is still waiting to hear from three more colleges, then we must decide. I'm having a little trouble focusing.

I heard my little sweetie saying to her brother, yesterday, that she is sick. That's why she gets to eat smarties and he doesn't. I told her that she isn't sick anymore that it is just the way her body works now, but in her 3 year old mind, she is sick.

Her brother has been having trouble with his special twin sister's diagnosis. He is so sweet and sensitive and was really worried when she went to the hospital. He has definitely been concerned about her and has been acting out in his 3 year old way, trying to figure out what happened.

My six year old seems to be taking the news like no big deal. She has adjusted and reminds me that I already explained to her several times what diabetes is. She was the one in a body cast for 2 months. medical procedures and setbacks are already old hat to her.

I figure that one day all of these kids will have a sensitivity and compassion for people with medical conditions. They have all been through so much already.

I know when my dad was getting sicker and we had to get a wheel chair for him to make it from the car to the doctor's office, I looked at elderly people differently. After he passed away, I smiled anytime I saw someone with an oxygen tank or wheelchair. I wanted to say, "hey, I've been there! I understand! I'm not just some young kid that doesn't care! I just lost my beloved dad!"

Just as years later, after my 6 year old had her cast off and was walking again, we took my brother to a magic shop that also sold medical equipment. (yes, weird), we looked at all of the medical supplies, and beds, and wheelchairs. I waited for a clerk to tell my daughter to stop touching things so I then could tell her, "you don't know what she has been through! She used all of these things just a few months ago!"

It seems like we just don't take enough time to find out what we have all been going through. we walk by each other and smile but we really don't know what we have all suffered through or are suffering through. some of us carry rather large burdens.

I pray that by us learning to be more open about what we are going through, others will learn to do the same and we can offer compassion that sometimes is desperately needed.

"But a samaritan , as he traveled, came where the man was; and when he saw him, he took pity on him. He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, took him to an inn and took care of him. The next day he took out two silver coins and gave them to the innkeeper. 'Look after him,' he said, 'and when I return, I will reimburse you for any extra expense you may have.' "which of these three do you think was a neighbor to the man who fell into the hands of robbers?" The expert in the law replied, "The one who had mercy on him." Jesus told him, "Go and do likewise." Luke 10:33

Did the samaritan have to take care of the man on the road? no. Did it make a difference in that man's life? yes. some wounds are physical and some wounds are emotional. Let us be the first to reach out to others, because you just don't know what kind of difference it might make in their life.

Right now, we are in need of being understood and reached out to and soon we will be able to reach out to others to minister to newly diagnosed families. one month already, feels like years.

photos

I found these great photos from Halloween last year. we are at our church's trunk or treat event!

new record low...

We had a new record low today.

she was outside playing with her brother and sister in the backyard. she had had breakfast but not snack yet. I was debating giving her a snack or doing an early lunch because they had had a late breakfast. I went outside to ask them if they were ready for a snack. Our little sweetie followed me back in to the kitchen. she agreed that crackers and peanut butter sounded good. I sat her down at her little table and gave her crackers and peanut butter to spread by herself. we don't normally check her at morning snack time. But I looked at her trying to pick up the cracker and knife. her little hands were shaking. I said," Let me check you."

I came back over with the meter and she willingly handed me her pointer finger. As the numbers counted down 5.4.3.2.1. I watched and then in horror saw the number 37 pop up on the screen.

I push her plate away from her and say "just a minute, let me get you some sugar." I dig through the box that holds the ziploc bag in the cupboard that holds the smarties for emergencies such as this. I grab the bag but can't get the bag open! I rip it open and grab a handful of smarties. I come over to her and quickly unwrap it to dump smarties on the table in front of her for her to quickly inhale. chew. swallow. chew. swallow.

She gets upset. SHE wanted to open the package! no. now she won't eat them!! I grab another wrapper. "here you go, open!" I sweep the other opened package almost onto the floor, out of her way. start over. its okay. open and eat! now!!

She of course, fingers trembling, can't get the wrapper open! I offer to help. She lets me untwist the ends. but she still wants to pull them out, organize them by color and then eat.

I jump up and grab the apple juice. I pour a fourth of a cup and return with a straw, heading off any further mistakes. I tell her to sip as she lines up her candies. She drinks all of the juice before she has her candy all lined up. She finally eats all of her candies. we then sit and wait. and sit and wait. and wait. looking at each other. from across the little table. I ask her, "are you feeling better?" she nods, "uh huh". in three year old language or teenager language that means "yes".

I then check her again and now she is 98.

emergency sirens turned off.

I then hand back her plate of crackers and peanut butter and she begins to spread the peanut butter on the crackers and assembles sandwiches. Happily she takes a bite of the first finished sandwich.

meanwhile, her twin brother is banging on the screen door that leads to the kitchen and wants in NOW! because his hands are wet from playing in the sand, and wet hands, of course is absolutely unacceptable. yes we are a house of prima donnas!

I can now address his needs now that her emergency is over.

All I say to myself over and over is: thank goodness I checked her. thank goodness. almost didn't. thank goodness. 37. oh my gosh. wow. 37. thank goodness.

teenagers and three year olds...

The doctor has left us on our own for two days now and as I write this, she is 487. we just gave her a half a unit of insulin. we will recheck her in an hour to see how much she has gone down.

Earlier today, at afternoon snack, she was down to 68. we tried skittles for a change, but not fast enough acting. she dropped further to 64 after 15 minutes! I then grabbed the smarties and fifteen minutes later, she was back up to 126.

Teenager is playing music on her wii in the background as I type. I think it is Radiohead.

My husband and I went to Red Robin tonight for dinner. My mom babysat with our eldest daughter. I trained my mom to check our daughter's blood before we left. we also gave her a snack and checked her. She was 219.

I am thinking that she jumped so high because she still had a snack at bedtime even though she was 219. but 487 is pretty high.

argh!!!

I'm definitely calling the doctor tomorrow to chat with her about this roller coaster again. she was steady for a few days. we were caught and released. and now back at the fairgrounds.

Earlier today I was shelving a new book about diabetes that a friend had given to me. I put in on the bookshelf between all my other books on learning disabilities. It's funny how so much of my life was devoted to studying about learning disabilities and learning styles and autism and sensory processing disorders. I used to be ready to educate anyone I met about misconceptions of dyslexia and ADD. Now I have become a type 1 diabetes advocate.

It's strange trading a 17 year old for a 6 year old and a 3 year old. It's like two lives in one. We have friends that only had one child or two close together and now they are almost empty nesters! We would have been empty nesters at 38!!

It's almost hard to remember our teenager as a three year old. It seems like a whole life ago. We traveled so much with her and did so much with her school and her friends and friends' families. choir, soccer, school performances. outdoor ed. Disneyland. horseback riding. Palm Springs. Big Bear. India. Santa Barbara.

and now that whole chapter is closing. She is getting ready to head off to college. Until she was in fifth grade, she was an only child. She and I used to watch movies together every Friday night and order pizza. We used to have dinner parties with her friends' families. Huge birthday parties in the summer, swimming, then camping out in our backyard. I'm so busy now with all of the little kids that I hardly have time to stop and think about how special she is and all the special things we did together. But soon she will be moved out and I will suddenly remember all that I am missing.

She has grown into my helper and friend. I don't have much time to meet her needs anymore. But I did. and my bookshelf is a testimony of our journey together. Our photo albums lined up under all of my non fiction books.

The other day I was able to spend the afternoon with her and we weeded out her closet and dresser drawers together. It was a fun time. I love to organize and she needed to organize. We were able to talk and reminisce as we found different neglected but treasured items tucked in her closet.

God gave us eleven special years. At the time, we wanted siblings for her but now I see that we were able to do so much with her that now we can't. Each child brings their own needs with them. and with every child added to the family, more needs and less I can provide for each child.

so tomorrow my teenage daughter is going to help a teacher friend of ours at Saturday school. She is great with kids. and I will be calling the doctor to consult about our little sweeties ups and downs.

two different paths now but occasionally we meet in the middle for a latte and American Idol.

laundry

Have you ever had to stop and think about what you are doing in the middle of what you are doing?

I was loading clothes into the washer and had to stop and think. wait, is this a cold load or a warm load? Is that only those of us who have mountains of laundry in front of the machine? throwing in so many shirts and pants, that its easy to suddenly start mixing different loads? Or is it those of us that have already mentally left where we are so reality is no longer pertinent? As I loaded clothes, I was already thinking about several other things I needed to do at the same time.

When we were in India, one of my favorite things to do was the laundry. When we lived in an apartment in Delhi, we had a clothes washer, a dhobin, that would come to our house and gather our laundry. She would then take it somewhere and wash it and bring it back later that day. They don't have laundromats in India, so it was probably the local river that she went to and pounded out the dirt and rinsed them and then laid them to dry in the sun. The dryer was never the problem, because on a cold day it was 110 degrees farenheit. At least in July.

We traveled from Delhi to another city Pushkar. This city was built around a holy lake out in the middle of the desert. It took us five hours by bus, miserable bus, to get there. By bus, I mean, picture an old 1950's city bus painted grey and bouncing up and down over every rock on the unpaved road to this holy lake.

This was a city worth seeing however, it had motels made out of old castles and camels nearby. And you get to stay for two weeks and just enjoy the food and the other tourists and sunrises over the lake in very warm morning air. This is where I did our laundry.

I had a plastic bucket and a bar of sandalwood soap and filled the bucket with water. mind you, you don't want to accidently drink this water, but it worked for washing clothes. I would grab a few sweaty clothes from the hot day before and place them in the bucket. we had one of the motel rooms that was made out of an old fort. stucco walls and rotating ceiling fans. I would watch the sun rise and sit on the cool cement porch and wash. This is where I did my praying and talking to God. I would sit as the Indian women would when they would scrub our apt floors. squatting as I scrubbed. I would scrub all of the clothes, then rinse in fresh water, then hang on our porch in the warm sunshine. This chore gave me license to just sit and think. On the outside I was busy, being productive, on the inside I was meditating. Now, I long for that quiet. the warmth and the peace and time to just sit and think.

so now when I do my laundry in our high tech country. I sort the clothes to the best of my mental state at the time. I put them in the machine, add a powdered soap and push the button. The machine now gets the joy of doing the work with no thinking or meditating required. I then hurry back to my other chores to check off of my list.

Advanced society but no time to think.

safety net gone

Today the doctor said that I have been doing an amazing job. amazing. her words. our daughter's numbers have been good again for the past few days. there are days that she still drops low or goes high, but the doctor feels confident that we know how to handle it when it happens. she told me that I no longer need to call her everyday and check in.

wow

safety net gone. or umbilical cord cut.

she asked if I was okay with this. why yes, I say. I had felt that our past phone conversations were a little unnecessary. I was explaining numbers to her. I recognize why she drops or jumps and know how to compensate. I don't panic anymore when she drops to a 75. yes 50. but not 75. I bought two bags of smarties. just in case. I take our meter with us even on twenty minute walks now, just in case. I will be training my teenager and mom, so I can avoid further panic attacks. (sorry, yes you will be trained).

I guess we have graduated to parents successfully handling child with diabetes. type 1 diabetes. juvenile diabetes. whichever term you prefer. chronic illness. disease.

some people still don't understand and assume we did something wrong raising her so that she developed this disease. I suppose that line of thinking protects them or their kids or grandkids. If we did something wrong, then they can prevent it. they are better parents. they won't have to start their own blog.

no one in our family has diabetes. It is a little perplexing to the medical staff that she developed this. but they don't blame us too. they just accept our ignorance to our family tree because it is genetic.

people still don't understand the difference between type 1 and type 2 diabetes. people immediately ask if we just have to watch what she eats. or make sure she has no sugar. or stop feeding her SO much sugar. because that might have caused this too, according to them.

Even looking at cookbooks for diabetes. It looks like most of it is geared towards type 2. As far as I understand right now, all we need to know is: carbs, serving size, and sugar grams. that's it. our day is regulated by checking her blood, sugar count, and insulin shots. not much cooking involved, but lots of math and reading.

some people think that we should be doing fine by now, because it's been four weeks, or we are home from the hospital, or she still runs when she plays. some people don't understand that just because she is doing well, doesn't mean I have lots of free time to take up knitting now. There is a lot of behind the scenes that goes into everyone doing well. my carefully detailed, spaghetti sauce stained journal will prove it. Or the bags under my eyes. or the milk left out over night, that didn't make it to the frig, because we are too tired to make sure that everything made it into the frig after the unloading of the car.

The doctor said we can call anytime we need to. we do have a lifeline. and she will understand. she has dealt with hundreds of us already. and probably hundreds more. as she weans one of us, she adds a few more. She handles the crisis, the teaching, the mentoring and then the release. She doesn't have a diabetic child but she has been on call for all of us worried parents for years. What people can't see is the dark lump that sits inside you as a parent. knowing that even though she is okay right now, she may not be in a few hours. or even though she has avoided the hospital for awhile now, she may be admitted again down the road. Even though we are administering insulin correctly now, we may make a mistake one day that could be fatal or at least a big problem.

you just don't know how things will end, but when your child is given the hang tag of a chronic disease. they suddenly become a little more mortal then the child sitting next to them. As any of the women I know that have had sick children or lost children, it is all borrowed time. That realization is something that can't ever go away. people can sympathize or be concerned or offer a meal, but until you have walked that walk, it is hard to understand how your life can change.

God is leading us somewhere. we have dealt with preemie babies, a child in a bodycast, and now diabetes. My heart breaks for myself and all of those other parents. None of us want our kids to have to deal with such harsh reality. They are supposed to just be thinking about building sandcastles and ballet skirts and butterfly nets. not hospital visits and bed pans and iv's.

The most amazing thing though, about these kids, is that they seem to be the most content, joyful, appreciative kids you will meet. Have they already figured out the meaning of life through their struggles? Do they already have their priorities in order? My friend that lost her daughter to cancer said that the kids in children's hospital had so many stories of angel sightings.

Perhaps God has already spoken to these children and gives them an extra dose of grace. So, our job is to watch God work through these kids and for us to keep pointing them back to how God protects them and takes care of them.

Our safety net is traded for faith. I didn't start living by faith until I was 27. My daughter could have 24 extra years of seeing God work. Praise God.

I continue to pray for my patience and letting God speak through me and to her. Amen.

to soar like an eagle

My six year old daughter ran through the waves today. she had been wanting to play at the beach for a long time. we live so close but taking four little kids with me, anywhere, is quite a challenge. Today, my husband came along. we got our lunch at In n Out to go and the kids began to eat as we drove to the beach. As soon as the kids spotted the beach, they all quickly finished their sandwiches and waited to be freed from their carseats. There was a large birthday party on the grass in front of our car. The kids wanted to join the party and try out their jolly jump. We had to explain that it was not our party. we couldn't join them. Before we got out of the car, I briefed them on the rules again for the park. our son immediately piped up "we can't go in the jolly jump". "yes, that is true", I said, "but also...you must be good listeners and stay together."

we began walking towards the playground by the ocean, when the closer we got, the more the water came into view. our path slowly began to curve right. veering further from the play structure to the sandy pathway to the rocky path down to the beach. That actually looked easier to me to keep an eye on all of the children. so we followed.

we had originally told the kids that we didn't know if we could play at the ocean water because their was a huge construction sign set up near the ocean that had warned of strong currents and to stay out of the water. But this enclosed beach area seemed relatively safe. there were lots of families playing there and the water was calm.

Our little sweetie clung to my husband still concerned about Tsunami tidal waves, while our son and other daughter ran to the water. I should mention they were in their church clothes not beach attire because this was an impromptu trip.

Our daughter and son kept teasing the water, daring it to come closer. they put their toes in, then ran back to safety in the dry, piles of sand. but the more they tempted, the braver they got, and soon we had one covered in salty water and one more to follow. Now that the initiation was over, any hesitation was thrown to the wind. Now my daughter was laying in the water waiting for waves and running in the glistening sun reflecting off of the water. she had arms outstretched as she soared to the tunes in her head. she ran as lightning to one end of the beach to the other. she'd pause at times to peer into a sink hole dug by a nearby child.

Our son was not so happy with his wet corduroy pants that were hanging off of his waist now. At home, if he drips some yogurt on his shirt, a change is required before he can continue his lunch. He sat in the dry sand, fighting back tears, waiting to leave. until he finally discovered the shovel and pail sitting next to him belonging to the brother of the other child digging the sink hole.

Our other daughter, who was worried about the tidal waves, slowly became intrigued by her big sister, taking on the persona of an eagle. She wanted to be her but vicariously. she cautiously climbed down from her Daddy's arms and tippy toed through the sand to get within yards of her sister. She then stretched her arm out for me to hold onto her hand and protect her. She then requested I lead her to the water, to safely get her feet wet. when her toes were just coated in a thin layer of salt water, she squealed and ran, pulling me behind her and then wanted to be held again to watch the water retreat from the safety of her landing.

When it was time to go, we had to strip two kids down out of their soggy, sandy clothes. Luckily, we have tinted windows. we arrived at home and began running hot baths. As the sand ran down the drain they relived their fun afternoon. Our six year old shared her adventures with her teenage sister. She might as well have climbed Mount Everest!

The day before, I sat and shared with my little sweetie how I had met other moms with kids that have diabetes just like her. She replied "I like kids!" As I told her how some of the other moms had 3 year olds too, tears began to well up in my eyes. My love for her, wanting the best for her, just seeing her excitement and potential for an amazing life. her innocence. her excitement.

Life is more than just needles and writing in journals and hiding sugary treats. Life is more than discipline and dishes. Life is loving the very children that we longed to create. loving them for who they are. sharing in their joys and dreams.

whatever our challenges, we must keep life in perspective.

I remember on one of our vacations in Wisconsin, we stayed at my uncles house. It was a warm summer evening and we had been on the lake for most of the day. that night, we looked up at the stars and tried counting them. we imagined the view of the sky from our home that was currently vacant, waiting for us to return. My uncle's house was out in the middle of nowhere. you could see a million stars.

that night, my dad tucked me in to my make shift bed up in the loft of his brother's house. my dad sat and talked with me as we said good-night, as we did many nights. He said, "Before you know it, we will be back home again, in your own bed. then one day you will be all grown up and tucking your own children in bed, and one day I'll be gone. It goes so fast. enjoy every moment."

my dad had already lost his first wife by then and his beloved mom. He already knew tragedy and regret. He also was a poet. He appreciated beauty and the simple things that can mean so much. the smell of a ripe orange. the blossoms on a peach tree. how important family was.

watching my little sweetie light up as I told her about other kids just like her and watching my other daughter completely absorbed with joy soaring through the waves, gave me my own joy of being a mom and being able to be part of these moments.

This is why we do what we do. to teach our kids how to enjoy life, in spite of whatever their challenges may be.

You never hear an eagle complain, you just watch it soar through the air, as it was created to do.

In Hindi, the word is: dharma.

fulfulling your purpose,

doing as you were created for.

God knew what your challenges were to be, when he created you.

When the sun sets every night, it knows that it will rise again to a brand new day.

green ice cream

Green ice cream. what screams more of processed food than green ice cream? I feel like I am eating manufactured something full of something else by placing each spoonful in my mouth. but that's what is in the freezer. green ice cream. it's dreyer's so atleast it has something natural in it. milk? it's not joe shmoe's green ice cream full of who knows what.

My earl grey tea is sitting in my jack skellington coffee cup (my coffee mug that says "beware of tired mom" was dirty), is waiting for my ice cream to soften so I can scoop it into a bowl and consume. tea must wait because I enjoy ice cream with my tea. or biscotti. or scone. or cookies or whatever sweet I can find. tea will be cold by the time ice cream warms up. hence the cycle will start of microwaving tea to match ice cream to enjoy both at perfectly warmed up and warmed down temperatures. then I get side tracked and tea gets cold while waiting and ice cream melts further and soon the enjoyment slowly melts and cools. intention was good. it was to be my treat after a long day. this is why I started walking again everyday. my relaxation involves some sort of chocolate and hot beverage after a stressful day. or long day. if I'm carrying a coffee, chances are it's my escape ticket.

my husband worked today from 730 am to 730 pm. with a horse shoe throwing contest for work thrown into the middle of that. consequently, I was on my own with four little kids and one being a diabetic for 12 hours today. teenager briefly helped but her punch card was tucked away for the weekend.

yesterday, my teenage daughter babysat for precisely one hour and 14 minutes for me to run to Trader Joe's. I think I have mentioned that this daughter of mine would rather die than take shots of insulin. luckily she is not the diabetic one. she used to break out into a sweat and mysteriously need a bathroom as soon as the doctor would walk into the examining room. even if she was there for a form for school or the wrong color of nail polish on her toenails, it would of course involve five surprise shots that she would be required to have to leave the premises. therefore, putting her in charge of my diabetic daughter is a little precarious. the issue used to be diapers. now it is blood checks. my older daughter would not change diapers. she would babysit but if they needed a diaper change, tough luck. emergency text and concert was over.

so, of course as I arrive at trader joe's, my cell phone spouts its last energy blip held in the battery as I try to send a text letting my daughter know I was at the store and be home in 30 minutes. phone tried delivering message than died.

died

now what?

what if my little sweetie suddenly drops and teenager refuses to check her and she goes into a coma, sweetie, not teenager, and I am not there to help?

I began circling trader joe's parking lot, frantically looking for a spot. a woman is waiting at stop sign in her car. waiting, waiting...looks like she is waiting for another car pulling out. not sure. I politely wait behind her then, counting the minutes to the coma, finally swerve around her to pass her and find a spot. well, at that very moment, she decides to move forward too. there we are, side by side, in the same lane, now blocking traffic on both sides of the pathway in the parking lot. argh! I finally speed around her and finally locate a spot. I head into the store and start grabbing items off of my list. Then I need the milk. the milk that is behind the large woman yelling at her two boys. she's telling one, "I don't feel well, you better listen to me. Get that milk, there! no, no. that one!" I say "excuse me" and she continues lecturing the boy about how he better understand the milk directions because they had just begun their shopping trip. I reach around her and grab the milk I need and maneuver my cart around them and continue on with my list.

the next aisle, I encounter another mom with two boys also that she is yelling at. what's with this shopping trip? trader joe's used to be my safe haven of cool mom's and hip people, wandering around buying imported cheese and organic chips? It reminded me of when we lived in Santa Barbara and everyone around you was earth conscious and recycled and loved late walks by the ocean on summer nights. some stores you go into, you know you will run into someone yelling at their kids. target, ross, walmart. but not trader joes.

This mom continues to yell at one boy for antagonizing the other boy and threatens, threatens, then offers a treat if they can be good for five minutes. super nanny, help! Again, I swerve around these people and grab my remaining items.

I get in line to check out and wait. woman in front of me is discussing her upcoming weekend plans and the bottles of wine that she is purchasing with the inquiring trader joe's employee. yes, chit chat is nice but not full conversation with stranger who was just making chit chat while meanwhile my daughter could be dying. or in a coma at least. or sitting in a dirty diaper. well she is potty trained but in the street playing or something like that. hurry up, gosh darn it! (I silently scream, because one of my redeeming qualities is my amazing amount of patience.)

so it's finally my turn and he begins to ask me about my weekend plans and how was my day today, etc. etc. what do I say? I was home all day with kids, one diabetic. haven't eaten lunch, dishes still in sink, haven't showered. just trying to get food for tonight. I tell him that this is my quick break from the kids. My teenage daughter is babysitting so I could just run to the store. He says, "hey!, do you want me to slow down then bagging your groceries, so you get a longer break? chuckle, smile." "no" I want to scream, I'm in a hurry! But I just calmly but assertively, urgently, say, "actually, I need to get home because my cell phone died and I'm worried how everything is going." "oh!, you don't want to find the house a mess?" yeah, something like that I say, or think, or find a diabetic child lying on the floor so low that she is about to pass out. I smile, take groceries, proceed to leave store, calmly but quickly maneuvering cart through crowd. while, I was ringing up, I noticed lady that was backing up traffic at stop sign was standing right next to me. afraid she would have something to say about me swerving around her, based on the energy I had already encountered in the store during this trip. but luckily she didn't. for being such a hip, whole foods, natural store, you sure run into a lot of edgy people there. definitely, not me however. now move!! I need to get home!!

As I am driving home, I remember the extra gallon of milk, I picked up for my mom. I debate, do I take it home and have her come get it? or swing by her house on the way? she does have a phone, I can call my daughter. I stop. I quickly place milk in frig and locate mom. "where is your cell phone??!! I need to text my daughter (she's a teenager, texting is most immediate means of communication) my phone has died!" we send her a text, no response in 17 seconds. slow for a teenager. I say I have to go and return to vehicle and head down the street.

I hear sirens as I drive. could they be heading to my house?? did my daughter call 911?? Is that why she didn't respond to the text? Is she busy talking to paramedics?? I push the pedal down a little harder and proceed to freeway. argh!! forgot road to our house is blocked off for construction. must swerve carefully but quickly through neighborhood. right turn, right turn, left turn, right turn, stop sign, right turn. almost there. everyone seems so happy hanging out in their driveways, walking, checking mail. don't they know I could have an emergency at my house?? just right there? up the street? to the right? yes, that house, right there??!!

I pull into the driveway. leave groceries till clearance is given. I open front door...and there is everyone happily playing.

teenager, normal matter of fact face looks at me as she finishes opening the front door with a greeting of "what?"

"didn't you get my text?? is everyone okay??" she responded right away to my text, she said. gramma knew. in fact they had a little text conversation after they both knew everything was fine. thanks for letting me in on that. where are my heart pills?

I grab the meter and check my diabetic daughter. 137. 137. no coma. no tears. just silliness and running around kitchen table. and giggles. and lots of helpers to bring in groceries.

I guess someone else needed the ambulance.

while I was typing this, my husband ate my green ice cream after I read to him my opening paragraph of this narrative. I firmly suggest to him that he could go buy me some "real" ice cream as my dad used to say. no imaginary stuff. something like java chip or heath bar crunch. white ice cream or brown, a little more natural looking. from the ice cream making cow.

so now I must reheat my tea and go sit down and watch supernanny. I think everyone is finally asleep.

the underground network

we're all friends but we don't want to be. we are all part of the secret underground club of diabetes. none of asked to be part of this club but we were elected. we may not like the way each other dresses or the music we listen to or our after hours hobbies, but we all know what its like to worry about our children. we all know about giving endless shots and checking a child at midnight and having to rush off from somewhere to get home to your child. we all have our own scary stories of when our lives changed. the defining moment from when our lives went from normal to diabetic. when we walked into the doctor's office with a sick child and then crossed over to an ambulance ride and rush to the hospital. we all know sickness that isn't really sickness. it can be a deadly sickness but it won't go away without insulin. with insulin our dehydrated, lifeless child can transform back into a bouncy happy well hydrated child.

the moms have an underground network that alerts each other to new diagnoses in the area. names are passed from one person to another until they are contacted and added to the group. they watch out for each other. It's like a vampire community living amongst the living. Our blood is different. It has to be checked throughout the day. Our blood sugar levels can go up and down from dangerously low to dangerously high. it can fluctuate due to fatigue, food we eat, illness, the clothes we are wearing. who knows. you can't let your guard down. just when everything is going well and you think you can go on a walk and leave your child with your eldest for half an hour, you discover her to have dropped to 50. one innocent neglectful almost jaunt could have ended up a bad situation.

one mom had to leave early due to her child having lows at home and she needed to check on her. We were the group to leave. we all understood. we have all been there. I was the newbie. just a 3 week old baby. feels like twenty years. but only 3 weeks. crash course in medical school. I have the responsibility of a doctor but get paid far less. about the same amount of sleep.

all previous passions and hobbies set aside. diabetes takes the stage. another mom was also a special ed teacher like myself. wow. that's right. I used to teach. I had forgotten. my whole life of advocacy up until now was learning disabilities. my oldest daughter struggled in school for years and therefore I advocated for her for years. that was my battle. my educational tool. my passion. to get her what she deserved and never give up the fight. and now she is being accepted by colleges. so there. to the teacher that told me I was being to easy on her, letting her slack off on homework. when the teacher didn't know it took her hours to finish one math page that she could tell me the answers to in five minutes. she knew the material. she just couldn't stay focused to write it out. she was why I ended up credentialed to teach special education. she wasn't in special education. but she learned differently. she had great potential that didn't fit into a normal classroom. she needed an advocate. her own personal attorney or cheering squad. not firing squad. sometimes it felt that way with some uninformed teachers about how students can actually be different than the normal mold.

one mom commented that I seemed to be handling the diagnosis of diabetes pretty well for three weeks. she said she was crying a lot at her first diagnosis. I do cry too. I can't retell some stories from the first week without crying. but I've also been calloused already. we've been through things that most people don't deal with. and we have been through several in the last few years. my twins lived in a NICU for four weeks. I dropped my 3 year old off at school one morning and picked her up at the hospital wearing a body cast. we took care of her in a body cast on our living room couch for 2 months. I already watched my Dad slowly die of pulmonary fibrosis. We are seasoned. diabetes is yet, another challenge.

In some ways, we are so old. we have been through so much. because diabetes is a life long commitment, there is an underground network. people with eyes in the walls watching and waiting for new members to add to the support group. to comfort them but also comfort themselves. the more of a majority diabetes is in our circle the more normal we are. people that don't understand our daily struggles are fewer and farther between. validating what we do and live through and live with. the more normal it is, the more we can face another day.

because who would sign up for this all alone?

a thorn in his foot

I took my baby to the doctor today. to the very same doctor's office where this all began. just 3 weeks ago, I took my sweetie in to our pediatrician for an appointment. thinking I was being a conscientious parent and thinking she might have a bladder infection. Even the idea of a bladder infection was cautious, I thought. I didn't know a lot about bladder infections either.

Our baby had stepped on something about a week ago. I didn't see him to do it and don't know what it was. I just noticed it when I went to kiss his piggies. Everytime I change his diaper, I kiss his piggies and he expects it. so this time, when he kicked up his feet for me, I noticed a sore on the bottom of his foot. He looked too and declared "ow." He pointed to make sure I knew exactly what he was talking about. not the finger. not the elbow. but yes, indeed, the large sore on the bottom of his foot.

I watched it for a few days, hoping it would get better. but it didn't. I finally showed my mom again, who is the same person who originally suggested a bladder infection for our sweetie. well, mom, thought, yes indeed, it looked like he stepped on something, and yes, it should be looked at.

I felt like a war veteran suddenly having flash backs. should I pack an overnight bag for this doctor visit too? surely they were going to recommend surgery to remove the object. maybe they would say it was really infected and they might have to quick treat the infection before amputation. sounds crazy but I was told by two separate people how people they knew with diabetes ended up having their feet amputated. so it was on my mind. he doesn't have diabetes but people get feet amputated.

I already felt like a neglectful mother. How could I have let this go for a week? could I have saved his little foot?!? mind you, three weeks ago, a bladder infection equated diabetes and a rush to the hospital. so of course, thorn in foot equated amputation and local hospital stay, if lucky.

I thought about calling my husband now and having him start heading home from work to be ready for the fall out from the operation. my mom was going to babysit the other three kids and then she needed to pick up my niece from school. If I'm sent to the hospital again, we will need back up help!

As we were packing up toys to go to gramma's, it suddenly dawed on me that I was sending my diabetic daughter to my mom for an hour and a half. snack time is included in that hour and a half. my mom is still not versed on administering care to a 3 year old diabetic. I pack an extra bag of all of her medical supplies and snacks and journal and meter. If the amputation doesn't take long, I'll be back for lunch. (this reminds me of a Fraiser episode)

so we all head over to Gramma's. drop the excited kids off with their toys and then I proceed to the doctors. Our regular pediatrician is actually out this week so we had to see a family practitioner. someone I was not familiar with and she was not familiar with us. Our regular pediatrician knows our family really well and she is great. This other family practitioner was a stranger, at the moment.

I was proud of myself for getting to the doctors at 10 am. exactly on time. they recommend 15 minutes early but having successfully dropped off three kids, one being a diabetic and arrive with a baby and park and be standing in line at 10, I thought that was great success. well stranger doctor disagreed.

There was a line to be checked in. one gentlemen at the counter was taking an excessively long time to clarify when his next appointment was. I had my card ready. but we had to stand and wait. finally we were checked in and then told to sit and wait. then our name was called and I was taken into a room and then told to sit and wait. when the stranger doctor finally walked into the room, the first thing she said was "well, we are running a few minutes late, so this will have to be quick." I said, "yeah, they were able to squeeze me in for an appointment today, that was great! " and she replied while looking down at her clipboard, "well, we still need to be on time though, don't we?" in a quiet, higher pitched condescending tone of voice. wow. definitely don't care for this doctor.

so I showed her my son's foot and explain what happened. she says, "a week ago? what has changed now, that you decided to finally bring him in?" wow. I guess her credentials make up for her bed side manner. "well, it's not clearing up." I say. she looks and decides, yes there is probably something in there and yes, it looks infected and she writes a prescription for an antibiotic. and then she's gone. that's it. no amputation. no hospital stay. just some condescending remarks and a prescription. I'm more irritated then relieved by the way she has talked to me. doesn't she know who we are? I want to go find my chart and read it to her. I feel like Linus outraged by the skeptics of the Great Pumpkin. "we are a great family! we have endured a lot! This isn't my first child! I know I need to be on time! we just spent three nights in a hospital with a diabetic 3 year old! Did you hear me?!" But she's gone, on to another patient to chastise for taking up her time with ailments and thorns in their foots.

As I emerge from the room, I leave enemy territory and spot our faithful nurse that explained to me what an endocrinologist was during that fateful check up. She asked me how our sweetie is doing and what ended up happening. Then I showed her our baby's foot and she sympathized and was glad to see us. Then I walked down the hallway and saw the other nurse that I had sat next to when I had to make that dreaded phone call to my husband. When I had been given five minutes to regroup and decide what to do about my dead cell phone and how I was to get our daughter to the Woodland Hills hospital as fast as possible. my daughter had sat on the floor next to my feet. she was playing with something on the floor, quietly awaiting her fate, while I sobbed on the phone trying to tell my husband what was happening. "not bladder infection...diabetes...hospital, now...must go...what do I do...help!!" The nurse sat at her computer listening to me. when I hung up, she asked what was going on and sympathized. I asked if she could watch my daughter so I could go to the bathroom and die, throw up, pass out, hide. I don't know. I had just wanted to wake up from that terrible moment. that nightmare.

so now, I was standing there with my baby and his injured foot. my daughter was safe with my mom and healthy. the nurse joked with me that indeed my baby didn't need an amputation and thank goodness this visit did not require a hospital stay in Los Angeles. She was there in that moment, when the world had stopped. She saw my courage and then my release. She saw the battle that I was caught in the middle of. She knew me and cared.

I glimpsed the new stranger doctor turning a corner and enter another patient's room. thank goodness she was not our regular pediatrician. we ARE fortunate to have the doctor we do and even our new specialist that I call everyday to strategize with. When my other daughter had broken her leg, three years ago now, I had called ahead to our doctor and she prepared the staff for our arrival. she did x rays immediately, determined a break and arranged an ambulance to the hospital. she then called several times later to make sure we were okay. she did the same thing this time with diabetes. we received several phone calls from her while we were in the hospital to just make sure we were okay. maybe we are spoiled. just a little.

my son and I headed off to the pharmacy and picked up his prescription. we even enjoyed picking out some fresh fruit at Lassen's while we waited for our prescription to be ready. I enjoyed my time with just my baby. something I don't get very often. with so many kids under the age of 7 now. I don't get a lot of one on one time with them. that was the best part of being in the hospital with our sweetie. I spent hours sitting with her in at her bedside making paper dolls and recreating our house in ink on paper. we also toured our floor many times looking for our nurse and that newborn baby we saw earlier. Even though our alone time is created by a crisis, major or minor, I still am thankful for that time.

For eleven years, I had an only child. I had never planned to have an only child but that's what God had given us. At long last we had another child that we had prayed for, for many years. Her name means "God has heard our prayers". When I had prayed and prayed and prayed, I remember sitting one day, on my couch, reading my Bible, and God speaking to me through a passage about "the floodgates of heaven opening wide" well, they did. four children later! and the amazing thing is with our 17 year old, we haven't had one trauma with her. no broken bones, hospital stays, she was only famous for running a really high fever with no symptoms. she first had this illness in India and then here in America too. a fever of 106 yet hardly any symptoms. that was it. weird and scary at the time. I thought the thermometer was broken, I went out and bought a new one. But she recovered from what the doctor dubbed "a strange virus."

God has led us through many paths and trials. The good news is; for now, there is peace. all of the kids are in bed. almost all are asleep, snuggled in. all medicines are administered. blankies are located, except for one, and all is well.

all is well with my soul.

95

So tonight I went out for coffee again with a friend. the past three days have been good. we have adjusted her insulin to help with her lows. she is still having some highs at midnight, in the 400's highs but I would rather her be really high than really low. so we are watching to decide how to fix that.

so I felt good leaving tonight and actually putting my phone in my purse, next to me on the cushioned bench. Last night, I had my phone in my pocket so I would be sure to feel it when it rang if I was needed, but tonight I felt confident to ignore my phone for one hour in the coffee house with a good friend.

She asked me how things were going and shared how things were going in her life. She is the friend that I mentioned before that lost a daughter to cancer years ago. She has had three more children since then and a lot of her conversation now is about homework and after school activities and extended family. She sat sympathetically listening to my stories of just getting through the day. just trying to keep three other small children entertained while I checked my diabetic daughter's sugar levels and counted and recounted her carbs.

I recently was looking in a variety of cookbooks for sale at a book store and was enticed by the photos. I contemplated a diabetic cookbook but ironically every recipe either didn't have the nutritional information for each recipe or it had lots of extraneous information for a type 1 diabetic. It seems to me that most diabetic cookbooks are aimed at type 2 diabetics that need to control their symptoms with their diet. type 1 again is all about carbs and insulin. that's pretty much it. and sugar. we have to avoid anything where its sugar count is more than half of the carb total.

I also allowed myself to thumb through some beautiful baking cookbooks. page after page of biscottis and lemon cookies and brownies and muffins. I love to bake. I love just sitting with a cup of tea and biscotti to munch on and browse through beautiful cookbooks getting knew ideas of food normally reserved for elegant restaurants that can now be made in your own kitchen! However now, my daughter could not eat any of these. Can I secretly bake at 10 pm and eat all my goodies before 7 am? Or could I substitute stevia for sugar and somehow calculate all of the carbs in an almond cookie for her to enjoy? I began to feel slightly sadistic debating buying a cookbook full of food that my daughter could no longer eat and reluctantly put the book back down.

so back to the coffee shop. My friend sat sympathizing with me regarding my struggles and it almost seemed as if she was trying hard to understand how difficult my days have been. She asked if I have time to do dishes? no. Do I do the laundry? some of it. How's church? good, but I was in the nursery Sunday, so missed it. How is she with her shots? good.

She was trying to understand but until you become completely submersed in this life it is hard to fully understand the silent responsibility that you carry everywhere you go. the bathroom, the garage, the store, the bedroom. If she is out of sight, she could drop to a low and I would need to find her, check her, and administer smarties.

The other day I was looking back on some old photos from the past year. I saw our Halloween photos. Everyone lined up in costume, each carrying a bucket full of candy. That night we had gone to an event at our church and then on the way home, we let them eat candy as we drove. four pieces, five pieces, six pieces. How many sugar carbs would that have been? we could have killed her driving home that night. I don't think she was diabetic yet, back in October, but that will be the last time she will ever be able to do that.

what amazes me about my friend is that her life is fairly normal now and she had to put some understanding into her repetoire for diabetes because she had never dealt with diabetes before. yet, she is the one that I respect and admire for she traveled down the cancer road years ago and bore much more than I had ever endured. She had to learn to trust God completely As Abraham had done when he had sacrificed Isaac. My friend has an amazing testimony for how God took care of her family when they walked the journey of a sick child and countless hospital stays.

I feel she is so above me in grace and suffering that I could never measure upto yet years later her life has already changed focus now to everyday life again. Never forgotten and always mentioned but yet her life has moved forward.

One day too, I suppose diabetes will be a second language for us. A story ready to share but our focus will once again be on homework and chuck e cheese again, rather than testing and carbs and lows and highs.

When I got in my car again after leaving the coffee house, I decided I should check my phone, just in case.

I had five missed calls. all from the same number.

my heart sank.

how could I have been so cavalier to want to enjoy coffee uninterrupted? I immediately called my husband. "what's the matter!?" "Is she okay?!" my husband said that she was 95 at bedtime, what should he do?

That's it? 95. that's not under 70. Give her a snack and put her to bed. In the same tone of voice the doctor would talk to me when I would call panicked with my daughter reading at a 79. The doctor would matter of factly say, "she's not under 70. just give her a snack."

so, already I was becoming jaded. 95 was no longer an emergency. don't call me unless she is grey and 45. three weeks later, already. used to a 95.

so now I must go and check some homework for my eldest.

Life does go on.

who's on first, what's on second, I don't know's on third...

My dad used to always refer to me as "sweetie" or "honey". At the time, it used to bother me. I remember saying one day "why can't you call me by my name?!" what an arrogant little kid I was. Of course, what I would give now for him to look at me lovingly and call me "sweetie".

One of his favorite old songs was "let me call you sweetheart..." He used to play an old honkey tonked piano in the basement of the house that he had grown up in. I remember my brother and I examining the honkey tonked piano. thumbtacks had been put in the back of each piano key so that when it struck inside the piano, it made the classic honkey tonk sound. His family used to hold parties all the time at that house they grew up in and the basement was where my dad and his friends and cousins would hang out. we, as the grandkids, got to spend different summers out there in Wisconsin and enjoy hanging out in that same room and hearing about the stories of "back when..."

The weather is so different in Wisconsin then it is in California. It would be humid and hot and sticky and your body would attract mosquitoes. we would hang out on the screened in porch and drink lemonade. Then when we were brave, we would venture out to the expansive, freshly mowed backyard and play and run and then get sweaty and sticky and hot and return to the nice cool house.

I remember wandering through that house, looking at trinkets and the paintings on the wall, trying to absorb my dad's life that I was not part of when he was growing up. I remember the Bugles, the crackers that we would only find to eat in their kitchen pantry, not ours at home. or the box of special k cereal that my grandma would always eat. something so mundane but special because it was part of them, it represented them.

That house has been sold now. I haven't been back to wisconsin since my grandfather's funeral. But all of those special memories are still fresh. my dad had a black and white photo hanging in his home office over his desk that he had taken of that house that he had grown up in. My parents still followed the green bay packers in honor of wisconson and a bucky badger flag was hanging in their house too. I raised as someone from Wisconsin even though only my older brother was actually born in Wisconsin. I didn't even know that I had a wisconsin accent until one day in 7th grade a friend pointed out to me that I said words differently then a native Californian would. darn those wisconites!

maybe that was the point when I decided being raised by these people was no longer cool. I had fair Nordic skin that didn't tan at the beach like all the other Southern California kids in school. I was raised on old radio shows and not only knew who George Burns and Gracie Allen were but laughed at their jokes. My brother and I memorized the comedy skit "who's on first" and performed it for a group at a retirement home. I remember my brother setting up the old movie projector in our garage and having the neighborhood kids come and watch Laurel and Hardy films.

My dad was creating a legacy. He was teaching us what he knew. He had a great time growing up in the era of the 1940's and 1950's and wanted to us share in what he knew too.

When I went to summer camp in middle school, my camp counselor thought I was the coolest kid because I knew all these old comedy skits. when I went to another church event, another kid complemented me on my freckles. my uniqueness that I thought made me strange was beginning to shine for me and get me noticed in a good way.

what makes us different can be the very thing that makes us special.

and then there is my sweetie. Now you know. in honor of my dad, she is now my sweetie. she has had a hard journey in her meager three years.

She was born a preemie at 33 weeks. She was a hefty 4 pounds 15 oz at 33 weeks. that was a good thing. However she suffered from Apnea four times which means she stopped breathing four separate times in the hospital. Each time, a nurse revived her and told me it was okay. it happens. She had to stay in the NICU for those four weeks until the doctors felt confident she would not have apnea anymore.

Then through her first year, she kept getting bronchitis. we were given a nebulizer to use to help her breathe and she was put on antibiotics and steroids. The doctor thought for sure she had asthma. But then it did seem to finally clear up and she hasn't had any problems with her breathing or heavy coughs for the last two years now.

Then her speech came slow. She stayed quiet a lot and when she did speak she was hard to understand. and now diabetes. and she is only 3!

All of these things that may add up to be "problems" or "that's too bads" may turn around and become "wows!" and "that's amazings!" someday.

Her name means "cherished one" and that she is. she is our little sweetie pie and we know that God has great things in store for her just as he did for me when I was an awkward middle schooler that talked like a wisconsoner. Maybe someday she will grow up to talk about her crazy mother that sat up typing every night into the wee hours about that old forgotten disease that everyone gets vaccinated against today.