I Wish I'd Known This When My Daughter Was Diagnosed With UCD
You’ve just had a baby. You loved when it was just you and Jasmine, but now she has a sister, and that’s OK. You can make it work. The past few months have been rough because Jasmine has been pretty sick, and it’s been getting worse. She’s skinny and refuses to eat, but you’re doing your best.
As you’re sitting in the doctors office waiting on the results, the doctors are asking a lot of family history questions, and you’re not sure what all of this means. You were just discharged from a different hospital yesterday after four days of test after test. You thought you’d leave with just acid reflux medicine. Wouldn’t that have been nice…
The doctor comes in and tells you Jasmine will be admitted on the spot because her ammonia is well over 200. You’re thinking, Wait a minute, she looks fine. He explains normal people with ammonia this high are likely in a coma. What’s ammonia? Don’t worry, you’ll be an expert in just a few short months.
Wait… a coma? Take a deep breath.
Remember that she’s alive and hasn’t suffered serious mental delays. You don’t know it now, but you’re so lucky, and Jasmine is so lucky that you found out when you did. She could be in much more serious trouble.
The next few hours of confirmations and test will define the rest of your life. Your life is about to change in ways that you can’t even understand right now. Even after months, I would tell you it’s still going to be a hard, steep learning curve. Stay strong.
It’s ok; everything will be OK. Cry every day if it makes you feel better. Don’t be ashamed to cry. It’s OK to wonder if she will be able to remain as normal as possible. It’s OK to worry about things like quality of life. Relax because all things considered, she should be just fine. It’s going to take a long time, but she’s alive and with a lot of work you can get her healthy.
Ask all the questions you can, and write everything down. Every time she gets hospitalized, they ask the same questions, and she’s going be there a lot in the next few months.
Educate everyone around you. Make sure early on that all of your family and friends are familiar with her condition and her needs. You’re going to need a break. Knowing you, you will push and push and try to do everything yourself, but you can’t.
Try not to compare yourself or Jasmine to other kids and their situations.
As you read through Facebook, you’re only going to hurt yourself when you see what all of the other kids are doing while yours is stuck in the hospital getting a feeding tube put in. This is your new life, your new situation and you need to own it — the sooner the better because you’re only going to stress yourself out.
Don’t be surprised if you feel like you’re failing her every day. Don’t be ashamed to ask for help, and do it as soon as possible. Don’t be worried if she doesn’t get her medications at the exact second you had planned in your head. Learn to accept that she isn’t going to eat like a normal child. Give yourself some slack because you have two kids, and this is a lot to handle for anyone.
Above all else, thank God that she and you have made it this far. Count each day is as a blessing that you get to help her through this part of her life so she can grow and become a young woman. You will be there for her then too, but right now she depends on you to stay alive (a little more than most), but by the grace of God, you’re going to see her through it. You are luckier than most; never forget it.
Follow this journey on Jasmine Marie and her UCD.
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