we met Bret Michaels!

Tonight we met Bret Michaels at the his concert!  We gathered local families and waited backstage for him to get ready to greet us.  He was very kind and took time to smile and greet each child.  He signed t shirts and even a woman's cast!  He encouraged the children and even later dedicated a song to the type 1 diabetic kids in the audience.  We are all so grateful that his manager worked this out for us and made time to meet kids just like him, living everyday but still facing the reality of type 1 diabetes.  thank you Bret Michaels!

my other daughter and Mary Murphy!

I wanted to share something exciting that happened to my eldest daughter the other night!  We love to watch So You Think you can Dance, late at night, after the little ones are asleep or in between night checks for our little sweetie.  My eldest daughter loves to dance and has found tons of places now that she and her friends frequent, learning all kinds of dance styles.  She was even recently approached by one of the dance instructors that she too could train to be an instructor because she stood out in her dancing ability!

The other night, she decided to go to one of her favorite dance studios before they went clubbing and dancing for fun!  As she checked in at the entrance, she was informed that Mary Murphy was there that night helping instruct different dances!  As they danced, my daughter and her friends moved through the dance line until my daughter was dancing with THE Mary Murphy!

My daughter and her friend just days before had driven all the way to Hollywood to try to meet her there on the National Dance Awareness Day and they couldn't manage to find the park that it was held at. (they are still teenagers).  So, it worked out that she just happened to bump into her in an even better setting!  This reminded me of the time that my daughter and I, years ago, went to Santa Barbara to meet the Dalai Lama and then years later actually traveled to Dharamsala, India, where the Dalai Lama lives, and he was vacationing in Europe at the time!  Sometimes what you go looking for is right close to home.  Write that down.

Anyways.  exciting event and my daughter deserved the treat.  She is our right hand person when we need a break from diabetes.  and boy can she dance!

returning to work

After four years of being a stay at home mom, I will be returning to work part time as a special education teacher.  I will be working with challenging teenagers that have had trouble in the regular school system.  I am up for the challenge.

We will be rearranging our home life to accommodate this change.  Our twins will be starting kindergarten, our second oldest will be in second grade and our eldest will more than likely stay nearby and complete one more year at the junior college where she was on the dean's list this past year.  She was accepted into an honors institute for this coming year but I think again, we are deciding that she can do one more year here and stay on the positive side financially.

My brother has had some health issues that stemmed from a freak work accident almost eight years ago, now!  He was working when a swarm of bees attacked him.  He ran to his truck to take cover, but when he thought the coast was clear and emerged again, the swarm came back and attacked him again!  Since then,  he has been treated in so many different ways for debilitating headaches and now many other health issues that have followed since then.  Recently, he was able to adopt a rescued pit bull and in a way to make Cesar Milan proud, he has been able to have her classified as his therapy dog now!  She is amazing!

I am thinking it would be great to have a therapy dog for our sweetie too.  I am beginning to look into some options.  Our sweetie is still emerging with her speech as she has been delayed and slow to communicate with us her physical needs.  She also has some tactile issues and I am thinking that over all she would benefit from a therapy dog.  Especially as I return to work. 

so as one chapter closes, another begins. 

keep reading

It amazes me that even when I don't get a chance to write on my blog, people still read!  Thank you for staying interested in our lives and my heart continues to go out to all of you googling type 1 diabetes because you know someone recently diagnosed.  Keep educating people on what life is really like with type 1 diabetes.  It doesn't go away, its not contagious, and its not caused by eating too much sugar!

I am considering going back to work after four years off.  I don't know how logistically this will work but I will keep you posted.   The position that I am considering is a special education teacher working with children that have been abused or are special education or both.  My heart also goes out to them.  When I was teaching before, I founded a bowling program that gave my at risk students a chance to earn trips out of their neighborhood and into the other side of town.  We drove them on a school bus and bought them nachos and let them bowl.  We partnered with another school and educated each group about each others neighborhoods that normally would be enemies. 

This potential job calls for an empathetic, creative teacher that can instill hope in these kids lives.  That's me.  I live it, have taught them, and have provided a safe home for neighbors kids and relatives.  It's who I am.  But am I ready?

When I was reading about the facility that is hiring, they also have a medical director, that works with the school.  She just happens to be a diabetes specialist!  I'm excited to meet her and refer her to our blog!

Anyways, who knows what will happen, but I am considering.  There is too much time too waste just sitting here typing...I love writing and will continue, but we must put hands and feet to our words. 

the reality of shots

the other day I went to give my daughter a shot of insulin for the food that she had just eaten, as I do multiple times throughout the day and sometimes night.  Everyday, every week, every month, for the past year and a half.  This time, she looked up at me and said "mommy, I don't want a shot."  This was the first time that she had said this to me.  She had trusted me in the hospital with iv's, with multiple, simultaneous shots at diagnosis, with blood tests, with doctor injections, and with myself robotically giving her insulin for the past 16 months.  But not this day.  I don't know what it was.  But today she just didn't want what everyone else already had, injected into her body, anymore.  She was done with being diabetic.  She is only four.  How is that she was only three when she was diagnosed.  Most three year olds don't have to go to the hospital.  Or have to have their playtime interrupted for blood checks, crucial apple juice drinks, and shots.  When did this  become her definition?  Where did my daughter go?  I look at the Christmas photos of her two months before she was diagnosed and I can see something was wrong now.  Her face was so thin.  She had already lost some of her life.  She would tire quickly.  Not for two months, would we have a diagnosis.  For two months, she was slowly dying.  and we didn't know.  Some  may not agree with me, but I was thinking about    people that get cancer, and get treated, and become cancer survivors.  I recently met a woman who is being treated for breast cancer.  When I told her that little sweetie had type 1 diabetes, she said "I will pray for her."  A cancer patient, will pray for my sweetie.  Cancer can be cured for some.  Type 1 diabetes in a little four year old, can not.  Every night, we check her at bedtime and in the middle of the night, just in case, her blood sugar slips too low and she might go into a coma.  every night.  every night, this can happen.  type 1 diabaetes doesn't become controlled or managed.  it never gets easy.  the dangers never disappear.  an overdose of insulin can always happen.  even with great monitoring, things happen.  her fragility will be in hands everyday.  every moment.  as I sleep.  as I wake.  as I leave her in other's care.  the reality of this disease that she is just starting to notice one piece at a time.

Resurface

I took a break.  I didn't realize that it had been that long of a break.  January.  But it was.  I started to feel to public so decided to hide for awhile.  But decided it was time to resurface.  I began a graduate program in January.  Hence the break too.  I will be working on my Master's degree in Anthropology.

So, last night, was biggest drama in awhile in dealing with diabetes.  I gave my daughter her long acting insulin and wrote it down.  Then my husband gave my daughter her long acting insulin and then realized...a big...woops.  After many phone calls to the doctor, a missed soccer game, some yelling, some snacks, and a vigil kept all night long in front of the television and on rotation to her room to check her and give her more food, she is doing okay.  The extra insulin is still in her until dinner time today, but so far she is okay today.  I was upset, then worried, and now tired.  So, in all practicum, I write.

went for a walk

we went for a walk today and some neighbor friend's caught up with us. They had seen us walking by and came to join us. Our kids walked together as us moms, chatted. one child in a stroller and three running ahead.

when we left the house, my sweetie was 191. I brought smarties and cheerios, just in case. we walked the long way so that they could pick flowers and help neighbors receive their newspapers that were sitting in driveways.

As we came up the last street on the way back to our house, we spotted another friend home, working in their driveway. He also is our diabetic friend that runs a group for diabetics. (God's plan). we chatted for awhile, while the kids played on his front lawn. Then it was about time to leave.

It had been almost an hour since we had left home. As we were starting to head off, my little sweetie, laid down on the sidewalk. As they do this for fun on the walk too, I wasn't overly alarmed. But decided it was time to check her again. I yell back at our neighbor. "64!"

I grabbed the smarties that I always carry, just in case, and opened some up for her. Our neighbor asked if I wanted a juice box. Of course all of the kids did, diabetic and non diabetics! So he graciously brought four juice boxes back. She began to drink one and finish her smarties. My son wanted smarties too.

we then checked her again and the meter said 287. Our neighbor said, "that can't be right?" He had never seen numbers go up that high so fast before. He suggested retesting her. He ran in the house and grabbed some alcohol wipes for me to clean her finger and try again. 106. that was better. We gathered all of our stuff, including the plant that he gave us, and headed back home.

I was thankful that we have a friend that knows all about diabetes right down the street from us. Not every neighborhood is equipped with lifelines! and I was reminded to always clean her fingers when checking her. False readings could be dangerous.

and our other friend was educated at the same time.

almost a year

It has been almost a year now, since our sweetie in the middle of the picture there, was diagnosed with type 1 diabetes. juvenile diabetes. a permanent condition. insulin dependent. an autoimmune disease.

This time last year, our little 3 year old was slowing down. she would often lay down on the floor and rest during play time. She was starting to wet her bed again, even though she had potty trained for quite awhile. She had a lot of trouble peddling her bike on walks. She was beginning to feel light when I carried her. She was getting quieter and quieter.

One day, a friend came over and during my friend's visit, our sweetie ran to tell me that she needed to go to the bathroom three different times and each time had an accident. I told our friend that our sweetie had been having trouble making it to the toilet lately. I thought it was strange but didn't know why. We agreed it would be good for the doctor to check her out. I thought maybe it could be a bladder infection. I had never experienced a bladder infection, but that seemed to make sense.

Valentine's night, I was calling around trying to find a babysitter for my other kids so that I could take our sweetie to her doctor's appointment the next morning. It was to no avail. Unfortunately our nice date night was full of concern as to how I was going to get our daughter to the doctor the next day.

That next morning, after changing our sweetie's bed sheets again, and noticing a rash, my teenage daughter offered to stay home from school that morning so that I could take our sweetie to her appointment. I was relieved.

I felt like a mom that was being proactive and going to find out why our daughter was having so many accidents. I read in a magazine that when anything is out of the ordinary in a child's behaviors, seeking a doctor first, is wise. I thought, whatever the problem, we will start with the medical profession, if its behavioral, we will deal with that next...

and the rest is history.

the doctor took a urine sample, just to be thorough.

She walked in carrying the paperwork and said that she ran the sample just to be thorough but didn't expect to find anything.

Then she looked again.

Her glucose levels were over 600.

She left the room.

Her nurse came in a blood meter, that now I am too familiar with. At the time I was yet, so so innocent.

What's going on? I innocently asked. innocently asked. so innocently asked.

the doctor is calling the endocrynologist.

what's that? I asked.

the diabetes specialist.

what's diabetes? I asked.

the doctor will come back and talk with you, soon.

Basically, in the next 30 minutes, my daughter was not the same daughter I packed into the car that morning on the way to the doctor's office. She no longer had a bladder infection that could be treated with antibiotics and returned to normal. She was now a daughter with an incurable autoimmune disease that had to be rushed by ambulance to faraway hospital and admitted for the next few days and I was to stay in cell phone contact with the doctor the entire drive to make sure my daughter didn't....pass out?, die?,....I don't know. I never asked.

so here we are today. Almost a year later. I still fight tears typing this horrible scene from the doctor's office that I never wanted to be part of.

But here we are. almost one year later.

my heart goes out to all of you knowing all to well what I am writing about.