A Special Milestone

The day after we got home from the hospital, I called our swim teacher and told her we'd have to change our lessons until the very last session in the Summer.  Sweets was not strong enough to participate in lessons (which were scheduled for the next week), and I was so frazzled that I couldn't even begin to figure out how to handle an activity like that.  To me, at that point and for a few weeks after, for some reason taking her swimming seemed like a really hard thing.  A scary thing to have her in the water with that much activity.  We have taken her a few times now, as a family, to the pool.  I know how to work the schedule and the amount of exercise to carbs she needs.

 Today was a special day.

It was a milestone we passed.  A marker of success.  I can't believe that it has arrived.

Sweets had her first swim lesson for this summer and she rocked.......I rocked.  It may seem like and insignificant thing to those who don't quite understand diabetes, but it is a balancing act.  Schedules had to be adjusted all day just to be able to get that blood sugar check right at the right time before her lessons.  Meals had to be prepared and eaten on time and sugar levels had to be in a safe range and maintained for her to exercise like that.  I am so proud of us.  Sweets and I.......a team.

We will be doing this for the next two weeks.  I am not a bit afraid anymore.

Bottles

I save things.  So when Sweets was done with a bottle of test strips, I kept the bottle on my dresser.  Yesterday I looked at the stack and it hit me.  6 empty bottles, that each once held 50 test strips, now sat there.  300 times.....  Those bottles represent 300 times Sweets has had her finger pricked.  She had plenty more in the hospital and is now just about done with another 50.  

In only 7 weeks, she has had her finger tips pricked over 375 times.  Can you imagine your fingers being poked that many times?

It is what it is.  In another 7 weeks it will be nearly 700 times......Then it will be 1000......Then it will be 2000 times. I think I will stop saving the bottles and just throw them away.  I don't need a record.
I can't wait for her to get a CGM.  A continuous glucose monitor would be heavenly.

A Picture Stroy about Type 1 Diabetes

This pink thing here is a pancreas.  It is located in your body across the back of your abdomen and behind your stomach.  Those black polka dots are islets or beta cells.  These beta cells create something called insulin.  When you eat, insulin tells your muscles to open up and receive the sugar or carbohydrates you ate and to use it for energy.

Sometimes someone is born with one or more HLA Complex genetic markers that will cause their immune system to see the beta cells as a foreign body and it will attack and kill them.  It's an auto immune disease.  Sometimes a virus will get in there and help the process along.  One can be tested to see if they have the genetic marker, still there is no telling at what time in their lives it will manifest itself.  

People who have Type 1 Diabetes have a dead pancreas.  It does not create insulin anymore.

Without the beta cells making insulin, telling the muscles to unlock for sugar, the sugar gets trapped in the blood stream.  The body does not receive any energy from the food that is eaten.  After a while, the brain thinks the body is starving and will start breaking down the fat and muscles for energy to stay alive.

As the muscles and fat are broken down, something called Ketones are produced and they also get trapped in the blood.  It's a poison and will make a person very sick.  Very high measurements of Ketones can make them throw up, dehydrate, and the body will hyperventilate to try and release toxins through the breath.  It is diagnosed as DKA or Diabetic Ketoacidosis.

This is when you get to go to the hospital because if you don't you will die.  This is where you learn you have Type 1 Diabetes if you don't already know.  This is where you get better.

Because the pancreas isn't working, insulin is delivered to the body via needle and syringe.  It is given 4 times a day.  A long lasting insulin once in the morning or night, and then a short acting insulin before each meal.  The blood sugar levels are checked at least 4-7 times a day to make sure everything is going o.k.

Now, all that sugar can go into the muscles and brain like it's suppose too.  The body can grow and develop like it should.

So this is what happened to Sweets.  She is o.k. now, but her pancreas will never make insulin again. She will always have to have it given to her through a needle or a pump for the rest of her life or until research offers something better or a cure.  She is happy though.  Which is a wonderful thing.

The Darkest Hour

It was a dark hour for Sweets.  Maybe the darkest she's had since her hospital stay.  No, she wasn't on the floor in a coma.  No, she wasn't sick from being too high. No, she wasn't in pain(physical pain anyway).  She was forced to be left out.  All of the family (family reunion) were headed to the park for a game of softball and fun.  She was so excited to play with her cousins.  Of course, we were behind because we had to do a check really quick to make sure she'd be o.k. there while I ran to the grocery store 10 minutes away.  She was left behind with the assurance I would drop her off in a second.
Her B.S. came back at 54.  She was over 200 ( too much juice) just an hour ago.  What the heck?  I had to go to the store for food for the next morning. There was no way I could stay with her at the park and I could not safely leave her there, even if I did get her levels back up.  There would be no one there to tend to her if she needed.  So, with a very tearful child, we left the fun behind and drove to the store.  I did pack up her sisters as well though, so she wouldn't be totally alone and promised a wonderful treat while we were out.  Still, nothing can bandage the sting, the hurt, the anger, the disappointment, and the sadness of something like that.  Diabetes..........has no mercy.

I put my sunglasses on and quietly cried with her all the way to the store.  Her littlest sister, in the best way possible, said "Mama, when Sweets get all better, she get no more pokes".  Sweets said "no Baby, I will not get better, I will have pokes until the day I die".  I began crying even harder.  The real killer was when Sweets then began to explain that she feels like a butterfly.  Before she had diabetes she was flying high, however she wanted, and now, she feels like someone put her in a jar with the lid shut tight to cage her in.  It was all I could do to pull it together before we pulled into the parking lot.
Yes.......I dare say......a very dark hour.

In the Background of the Celebration

We (my husband and I) were in the far shadows, in the background, behind the pancake breakfast, down the bench with snacks during the program, further back watching her gather a sack full of candy from the parade, on the sidelines of the water fight (that went on for hours) with a juice box or two, by ourselves quietly and frustratingly counting carbs for the picnic dinner, sitting on the ground with a watchful eye during rambunctious play during the firework show, measuring homemade ice cream with a 1/2 cup after everyone had their turn, and then I was sneaking through the dark of the night to treat the delayed low that was inevitable.

Sweets had a "normal" Fourth of July.  We tried our best to let her be on this day.  To let her eat what she wanted and to let her play as hard as she could.  It wasn't easy, but it was possible and it all worked out.  Sometimes I wondered if I was even enjoying my Holiday while trying to give Sweets hers.  I was secretly jealous of all the other parents, who were chatting away, having no sense of time, loading up their kid's plates with how much of whatever, letting their children run without a care in this world.  No worries at all.  Even though I may not have enjoyed my Holiday as much as others, I bet it meant more to me.  I gave my child something she wouldn't have been able to do on her own and that sacrifice is one I would do over and over again.  One that I will have to do over and over again.  And I am glad too!

P.S.  As I watched Sweet's gather up candy like the rest of the kids, I was wondering if she was even thinking that there was no way she was going to be able to eat it.  I mean a piece here or there with a meal or when she's low.  It would take 3 months to go through it.  Still she had a good time scrambling for it though.  I was worried about how I was going to deal with a big sack of candy in the cupboard temping her.  I thought maybe she could trade it in with me for something else.  I got a big break though!  She had also picked up an Otter Pop that was thrown.  It had a hole in it and leaked all over her candy and ruined it. I threw it away immediately and without her knowing. You know what?  She didn't even ask about the bag of candy.  I think she knew in her mind all along that it wasn't going to be feasible and had already let it go before I threw it away.

Trust And Help

I never ask anyone for help. I think if I need help then I am not strong.  I am stubborn.  Also, I don't trust people to a certain degree.  I have one babysitter I trust enough to take the kids for a couple of hours once in a while.  They don't spend the night places, I don't like them driving in other people's cars if I am not there, I don't trust men around my kids, I don't let them run around the neighborhood, I check on them all the time.  The list goes on.   I know I am insane (I don't need advice or lectures about it).........but, my kids are safe.  These two traits of un-trust and do-it yourselfness( I realize this is not a word) are not a good combination for a Mother who's child has just been diagnosed with Type 1 Diabetes.

First of all, my first bout with distrust in this diabetes thing was when our night nurse came in and immediately I was weary.  Anyone who has been in the hospital for a critical thing can tell you they have had a nurse or two who didn't seem as confident.  I was worried she couldn't take care of Sweets.

Second, I started to wonder if I could really trust the IV systems that were keeping her alive.  It's a box with wires and beeps and tubes and bags.  It could be faulty.  I had to trust in the Dr.'s, the equipment, the insulin, the needles, etc. etc.  Were they all going to do their job right?
Third, I really started to wonder if I could even trust myself.  The ONLY person(besides my Hubby) I really do trust!  Ha.....seems like an oxymoron.

I had to trust neighbors to take care of my children.  I had to trust that they would be fine without their Mom and Dad there.

When we got home I had to trust myself to be strong enough to do all this.  I had to trust Sweets to LET me do all this to her.

I had to rely on help from others.  My parents, neighbors, friends, nurses, doctors.  They all saw me cry.
I had to rely on my husband for strength more than I ever had.  He helped me more than anyone.
I had to accept help from people I never have met and will never see again.
I have to ask for help now.  I can't do this one alone, although my stubbornness makes me want to try.  I need emotional strength.  I need others.

I am learning to Trust.   I am learning to except that I need Help.   And that's all o.k.

Something Positive

 I realize there is not much happiness in this blog, but it's a blog about diabetes and there is not one good thing I have to say about that.  Nope, not one.
On the other hand, it is a trial our family and Sweets face.  A trial that lasts forever.  Everyone knows that good things come from trials (if you let them) so good things must be a comin' for the rest of our lives too right?
Anyway, there are a handful of positive things that have happened to us because of her diagnosis (not in any particular order).

1).  I have realized I am a lot stronger than I thought.  I always thought I was emotionally weak.  I always wear my feelings on my shoulder and have had a hard time controlling my emotions.  This forced me to learn to exert extreme patience and mental control in situations where it was necessary to put on a brave face and a smile for Sweets.

2).  Husband's and I's relationship has been brought to a new level of support, understanding, and love. After 15 years of marriage, I cannot express how thankful I am for him and for the new respect and admiration I have for him.
3).  I got to feel the love and support from neighbors and friends at the exact time in my life that I thought there was none.  I was going through a rough year wondering if our Church members really cared for each other.  I was thankful to have my Faith regained in them.
4).  We have met some amazing people who are completely dedicated to their work and people.  In a world where it seems everyone is for themselves, it is refreshing to see people serve others just because they love to help.
5).  It has been brought to our attention that our family needs to spend more time away from our individual pleasures while we are in the same house and use that time to interact with each other.
6).  I have a deeper respect for all those who are suffering from health related issues.  I realize that people are walking around looking "normal" like I do, but inside their lives it is tumultuous.  I need not to judge others.
7).  The small simple things please me to no end.  For example, an evening drive through the country to smell the fresh cut alfalfa, see  the wild birds, feel the cool air, and sing songs on the way with the children has been one of my favorite things to do this summer.
8).  My eyes have been better opened to my children.  I am more aware of their feelings, thoughts, and actions.  I am more concerned about their happiness and their progress in life.  I am more dedicated to their health and their future.  It's easy as a Mother to get in a lazy groove at home with the children.  We seemed happy and functioning enough.  I hadn't realized that I was slacking in certain areas.
9).  I have felt the great love and concern of my siblings.  At a time when were are all busy with our families and not near each other much, it has brought me great comfort to see them rally around and support our family.  I have realized, we are a strong extended family.  Not one brother or sister has failed to call or text multiple times wondering how we are doing.
10).  I have a deeper respect for my oldest daughter Sweets.  She has been an interesting personality in our home to work with. It's been hard for me to get along with it.  My eyes have been opened to the kind of Spirit she has and it's amazing.  She is strong, courageous, full of life, and never lets things get in her way.  She has never complained, asked why, or cried.  She had not been depressed or upset or too worried.  She goes on with her life dancing and playing and being herself.  She bounces back for all sorts of sad things and always seems generally happy from day to day.
I know I can go on with my list, but these are the top ten.  Our family is extremely blessed each day.  We have each other and we are strong.  We have family, friends, and neighbors who love us.  We have the means necessary to care for our children and to provide the things in this life that they need to succed and be happy.  We have awesome doctors who allow us to reach out to them in thier personal lives if necessary.  Our insurance coverage with all of Sweets medical needs is awesome.  I can't imagine having medical bills hanging over our heads too.  We will and can make it with this.................

Time

In my mind I think it, but I never say it out loud to anyone. Not even my Husband. I mark the time quietly to myself.  It's been one week.  Now we've made it through two.  Look, three have gone by and Sweets is still living.  Today it's a month.  It's silly because why bother measuring something that's in infinite in time?  I am I going to say later "oh look, it's been a year, two, twenty, thirty.  Holy cow it's been 50 years"? It seems absurd to even think about the time.  Diabetes is here forever and it's never going away so there is no reason to mark the time.  It's not even a joyous event to remember.  Like a birth or something.  What are you suppose to tell people?  "Happy Diagnosis Day, Congrats, it's been 10 years and you are still here".
Then there's the thought........it's a killer......how much time does she really have?  You hear about Diabetes claiming the lives of children in their sleep.  It haunts me every day.  You can do everything in your power perfectly and the unexpected happens.  The thought can drive you mad making you set your alarm for 12:30 a.m., 2:00 a.m., and 4:00 a.m. just to shake her to make sure she can respond to you.
Then there's the all the time you spend looking like your doing o.k. on the outside (going throughout life and doing normal things), but on the inside, your brain is constantly in worry, or thinking, or planning, or whatever parents of Diabetic children think about 24/7.  No one can understand what it feels like to have to constantly be thinking of the next thing you have to do to make sure your daughter can live through the day.  You think you can plan one step a head of it, because really it's a game of strategy, but sometimes you lose because Diabetes cheats.  It's cheated Sweets out of life.
Speaking of time......it's time to start planning lunch and dinner and then our outing out tonight.  It all has to be meticulously planned to the hour.  You can't schedule a time to go test drive a car unless the rest of your day is perfectly planned because you don't want to get caught at the dealership when dinner should be served or when a low could be expected.
Yup, Diabetes runs the show and has stolen our time.  Time that shouldn't even be measured.