Guest Post by Alexis
I am going to write from the heart. I want to talk about Justice as a baby, his diagnosis and all my biggest, darkest fears of raising a child with Type 1 Diabetes. A lil bit of it all.
My pregnancy with Justice wasn’t the easiest but everything was looking fine until a few weeks before he was due. He was measuring really small and the OB said his stomach wasn’t big enough. I was put on high risk.
Justice was born on 10/17/02, 7lbs 7oz 19 inches long clearly they were wrong. He was a beautiful baby, with the biggest brown eyes who changed my world forever. My first baby, my son, the love of my life and he owns my heart.
The day came where I thought we would get to go home. The doctor came in and said he didn’t like the way Justice’s eyes and skin looked so he had ordered labs. Justice’s billirubin levels were 16. Normal is like 8? He said Justice had to go under IV lights right away. He had jaundice. He said although Jaundice is easily treatable if levels didn’t come down it could cause brain damage, organ failure (??), even death.
I was never so scared, before. . My husband and I spent every waking moment with Justice. He was in the PICU for 2 weeks. Hardest 2 weeks of my life so I thought . They allowed him to finally come home but with an IV light that had to go under his clothes, and he had to go in for weekly labs.
Finally his levels were normal, his eye color and skin were looking right and he was alert and happy to be home!
I always wondered if the jaundice was a reason behind his diagnosis of Type 1 diabetes 6 years later. We still don’t know.
In the mean time we battled with asthma at 6 weeks, and awful reflux that required meds for a few months.
Around 6 months things started calming down with his health. He was growing, happy and oh my god so smart!
Fast forward to 2008. A bright, energetic, loving, outgoing and silly little boy who’s parents were surprising him with a trip back home to NY for his 6th birthday!
I can write about the events leading up to his diagnosis but would have you all reading for days. Let’s just say when we left to NY there were no symptoms except for his thirst on the plane and peeing a lot. He’s 5. We live in the desert and he’s excited!
Fast forward 72 hours 10/21/08 (for full diagnosis story and photos please see my blog). Justice could not walk, couldn’t talk correctly and was vomiting.
911. ER. Nurse knew what was wrong right away. She smelled the ketones on his breath and he was rushed to ICU. Doctor said he was in DKA. His sugar was 484. My life once again had changed.
After a few hours Justice finally was alert, able to talk and wanted to draw (he loved to draw). While he did that, and played with volunteers we were drilled on Type 1, carb counting, ICs, ICFs, ketones, lows and more.
5 days in St. Joseph’s and we were sent on our way. Mind you we were in NY so we had to get back to Vegas, all while dealing with this new “houseguest”.
No one told us how scary lows were. No one told us that he would get angry and punch things when his bgs were high. No one told us that even if we counted carbs, followed a schedule and did everything right, sugars could still be out of range to say the least. We had no support system. No family close by, no one who could really say ” I understand”. It was lonely, scary and exhausting. But we managed pretty well. A1Cs stayed between 7-8, glucagons expired without use, and Justice was doing his own shots. We changed how we lived, I worked and my husband stayed home. Someone had to be accessible at all times, and able to go to the school daily to administer insulin. (I don’t drive, another blog, another day).
Its now 2 years later. I wish I could tell you its gotten easier but in some ways its worse. Not worse in terms of his sugars or care. No way! That’s 100x better! We know what to do, we don’t panic anymore, he’s pumping, and last A1C was a 6.8!
But now we know. Now we know the truth about this disease. The horror it brings and the complications that honestly can come later in life with or without tight control.
Yes. We knew before but not like now. We are more educated, more involved, and more knowledgeable. I wouldn’t change a thing, because I now feel like I can take better care of Justice than ever before. But the fear is now a huge part of who I am and my daily life.
When I wake up to check him in the middle of the night multiple times there’s fear. Did he drop since last check? Will he be breathing? Will I need glucagon? Is it too late? To fear your child’s demise every night weighs hard on your soul and mind.
When he plays, there’s fear. He runs, plays basket balls, climbs, jumps and acts like a normal active hyper 7 year old. But will it be too much? Should he stop? Will the temp basal keep him steady? Will his pump get knocked off? Will he collapse on the playground? Will other kids bully him? Will they play with him the same as other kids?
When he has a cold. The sniffles. A sore throat. Just you know, allergies. Now his sugars are high, will he develop ketones? Will he need to go to ER? Will this turn into pneumonia? What medicine can he take that won’t spike him to high heaven? If he’s vomiting, and low, with ketones how do I give insulin? Will he develop DKA?
We all look into our kids futures, we want them to be happy, healthy, and successful.
Healthy. That’s my main one. Will having diabetes since the age of 6 wear on his organs? Will it cause eye problems? Will he lose feeling in his hands or feet? What about his heart? Will he be able to do everything he wants to do?
Not to mention telling him he can’t play cause his sugar is too low or too high, saying he has to wait to eat because that 300 just won’t budge, or having to explain to him why he feels the way he does when his sugars are not in range, why I have to check his feet weekly and take extra care of cuts and scrapes that most parents shrug off.
To be honest there’s so many more thoughts that go through my head. I haven’t been out with my husband on a date in two years, I watch my phone all day while he’s at school and still haven’t allowed him to go to a friends house because of these fears.
Don’t get me wrong he’s happy, active, well rounded and knows little of the fears that taunt me.
But I want others to know. In recognition of World Diabetes Day, I want Non-ds and parents of Non-ds to read these blogs, listen to our hearts and really understand what we go through every day.
This disease is not easy by any means. Not for the one who has it, the one who manages it, the ones who support them. Its a tedious, taunting and honestly a bullshit disease.
But we keep going. We do what we have to keep our children alive.
Yes, alive. It’s that serious.
If you didn’t know, now you do.
Alexis, Mom to Justice age 7 Type 1 since 10/21/08
To read more about Alexis and Justice, check out: Justice’s Misbehaving Pancreas
You can follow Alexis on Twitter: @Sugar_Nova