Tuesday, September 14, 2010

Back story...

To be blunt, my little guy has gotten the short end of the stick since before he was born. You would never know it, though, if you met him. He is easily one of the most positive, sweet souls I have ever had the privilege of knowing.

When I was 20 weeks pregnant, we were told that our son would be born with a cleft lip and palate. Thankfully, when he was born, his palate was intact and it was “just” a cleft lip. He latched on with that cleft lip and nursed until he was 14 months old.

“Whew!” we thought. We got so lucky! One quick little surgery at 4 months old and he’ll be as good as new.

And he was! For a few months anyway.

At his 6 month well-check, our AWESOME (did I say awesome? ‘Cause she is) pediatrician noticed “something” in his eye. A speck…hardly noticeable…but she wanted us to have it checked out with a pediatric ophthalmologist.

I wasn’t worried. After all, we’d already had our scare! Adam was going to be just fine.

The doctor was amazed that our pediatrician had seen what was in Adam’s eye. It was so tiny…a cataract. He said it was fine for now, but it needed to be checked in 6 weeks to see if it got bigger.

Whew. Okay. Not so bad…we can deal.

Six weeks later and we’re back in his office. The cataract has gotten larger and is obstructing Adam’s vision. The lens of his right eye must be removed. Immediately.

I cry. I can’t believe the shitty hand my son has been dealt. But it is fixable. Do-able. It’s not a disease.

When Adam is 9 months old, he has the lens of his eye removed and is fitted for a hard contact lens that we must learn how to put in his eye every day.

Ever tried to put a contact lens into a squirmy, uncooperative 9 month-old’s eye?

Yeah, didn’t think so.

It takes 2 of us to hold him down, often times upwards of a half an hour to get that damn thing in. (This is, I believe, what they call foreshadowing. God gave my husband and I practice at holding our son down, so we'd be ready for insulin shots. Heh.)

*This is where I have a nervous breakdown and begin to explore the joys of Lexapro.*

Like everything else…it gets easier. Adam gets used to his contact lens, patching, etc.

We get used to searching for lost contact lenses on our beige carpeting, letting a few f-bombs fly when we step on them and have to pony up another $140 to buy a new one.

Fast-forward to this summer – Adam is starting pre-K three days a week from 9-1pm, my daughter will begin 2nd grade.

I am smelling something wonderful. It’s called freedom.

Freedom to exercise. Freedom to contemplate going back to school. Freedom to build things in my garage. Freedom to bake…for people to actually pay me to bake!

If you read the first post, you know how this story ends. The universe tells me, “Ha…hold it there, little missy. We’re not done with you yet.”

And so the story begins.


  1. Oh my, this post hit me in the heart. You have been through more than your fair share! Enough already, right?!

    We nearly lost our youngest son when he was a newborn. He spent a week in the NICU fighting for his life. He's now a happy, healthy five-year-old with no medical issues, but at the time, we thought that week would be the worst week of our lives. And then D came along...

    You WILL get some freedom! It may not be now, but you will get it. You're still acclimating to D, but it, too, will get easier. Hang in there!

  2. Hi Stephanie,
    Wow! That is a LOT to happen to one little guy AND his family. The amazing thing about our children is that they are so resilient. And, as cheesy as it sounds..all this "crap"..it makes us and our children stronger and teaches us great compassion for others. You will get some freedom..it take a while to get your sea legs with D but you WILL get there and overcome it just like you have your other challenges.

    I am so glad to meet you and am looking forward to following you on your journey. Know that there is a wonderful online community of other parents who are here anytime you need to cry, be angry, laugh or just totally get what you are talking about!

  3. Hi! I am Reyna from Beta Buddies. My son Joe was diagnosed when he was 3 years old (he is now 7).

    I am so glad to meet you. I too was in your boat of tasting freedom...when he had just started preschool...he was diagnosed with type 1 - UGH. I sooooo GET IT. I look forward to hearing your story. You will meet some terrific, awesome D' mamas on here. They are like family to me. Welcome.


  4. Justin had a long journey on the way to his diagnosis also. Seems like he has seen more doctors than I have my whole life. There were soo many times I thought "this HAS to be it".

    Its great to "meet" you... you are one lucky mama to be in AZ. There are A LOT of amazing D Mama's(like Heidi) there that I am SURE will be stopping by soon.

  5. Well it is a bitter sweet event to welcome you to the diabetes on-line community. It sounds like your lil man has had a lot on his plate since he was born. But welcome and I hope you find lots of support on this journey!

  6. Welcome, new friend :)

    I'd love to know how that Lexapro is working for you....Zoloft and I have become buddies, but I'm always open for new friendships....

    My friend....I know this is crazy. I know the journey may seem hard to believe, uphill, long, tiring, and flat out ridiculous.

    Just know that you are not alone. We're here. Some of us are new like you....others more seasoned. We'll help you push up that hill -- take the next step -- and jump in to keep you from rolling back down altogether. Along the way, we'll hold your hand when it's the middle of the night and you can't figure out the blood sugar games....and we'll cheer from one time zone to the next when you celebrate a seemingly small victory.

    No victories are small here. They're all AMAZING. A target blood sugar deserves a party, complete with balloons and cake as far as we're concerned.

    Blog with us. Find us on FB. Twitter. Whatever. Your beautiful family isn't alone.

    D Mamas take care of each other.

  7. BTW....I think I approved your membership to the WV Group in AZ :)

    Small world....

  8. Hang in there. I am familiar with the dark days of the new diagnosis. Ava was diagnosed 20 months ago at age 7. I know how you are worrying, thinking, learning and you still have to make dinner and do laundry! I will tell you that six weeks after diagnosis we went on a family ski trip to Aspen and things felt almost "normal" then. Three weeks after that I took my girls to Florida for spring break and Ava went on Space Mountain roller coaster for the first time. Every day will get a little easier. Every carb count will get a little faster. Every poke will become routine (you'll be a pro at doing them in the pitch dark - we love the Freestyle Lite meter for its flashlight!) We have been on three multi-day river rafting trips since diagnosis and Ava went to sleep away camp this summer. Diabetes will not stop your little guy from doing anything he wants to do. We told Ava that she'll still have her regular old life of a 7 year old but we'd have to do a bunch of diabetes things each day. I think we've been true to our word and you will be to. Best of luck.

  9. I hear ya. We had the worst two years...then diabetes dx. I think for me though the diabetes dx wasn't too scary as my husband has t1d and I know that it allows people to have "normal" lived despite all that can be thrown at them with the medical condition. I'm sorry you've been through so much and I hope eventually you'll find other ways to feel "free".