Closed Doors and Perfect Timing

I apologize to all teachers in advance, (and I really totally understand why you need it so please don't be upset with me) but....

I sometimes wonder if the only people benefiting from school breaks are those lucky folks who get to go south for a week without denying their children major information that will definitely "be on the test later" and teachers. It's Friday and I feel like I've just exited a war zone. I've cleaned more puke this week then I've ever done in my entire life. I've heard more screaming then even on the worst newborn days (okay so maybe let's not count Amelia's colic....). And I've listened to and had to discipline enough whining/sass/squealing that I'm seriously wondering how we'll make it out alive from the teenage years. 😂

Needless to say, over here at the Unright household, we are all ready for break to be over. I was about to type "It was a great first few days of spending time at home together!" But then I remembered, "Oh wait, Natalie spent the first 2 days throwing up and Amelia spent the next 3-4 throwing up. Oh and my husband was out of town. And Amelia's body also thought it was the perfect time to cut a molar. And Natalie is a cat and can't handle routine changes so she fell apart..." 

I would go into all of the craziness of the week but it would take longer than the hard seltzer in my glass and I really just don't want to relive it! I'll sum it up with a few words: puke, husband travel, broken cars, stranded home, puke, colds, temper tantrums. But before I start being all, "woe is me it was all bad," I could also add words in like, snuggles, reading books, conversations, new skills, smiles, and helpfulness. Because it wasn't all bad. The bad is what I remember because this afternoon was just rough. This afternoon was like:

👆 Me (from my dark bedroom upstairs) to my cousin Jess who lives with us and was cleaning up Amelia's spit up for me (THANK YOU JESS)

The other thing this afternoon brought was a closed door that hit me on the butt pretty hard. The Undiagnosed Diseases Network got back to me today saying that they have decided not to take Amelia's case. It's been almost a year of working on this application so it hits hard that we've been denied. When I first got the phone call I was okay with it. I reminded myself that we don't need to know a diagnosis to love on Amelia, her cortical visual impairment diagnosis will be a ticket to many of the services she needs, we'll just treat the symptoms not a label anyway, etc. But it still really stinks!! This would've gotten us a step closer to having answers. Or so I think. I also remember that there are 4 scenarios that could've come out of her involvement in the study. 

1 (ideal scenario). We find out the genetic mutation causing her symptoms, we get an idea of a prognosis for her, we are able to find a support network of other people familiar with the diagnosis.

2. We find out a genetic mutation but no clinical significance is known so, while we know the gene possibly causing her symptoms, we aren't closer to finding out a prognosis or a support network.

3. We find out she has something degenerative and are given a not so happy prognosis.

4. We find out nothing.

I do understand that being able to mentally prepare for regression is important, however, I'm not sure I would've appreciated the 3rd scenario. I want to love on my girl without having questions and fears about when her condition will worsen, etc. I know that many people live with that fear and God can take care of that fear, but I'll be thankful for ignorance if that's what God is calling me to instead of be angry that I don't know. What if God's plan is that I not know so I'm not anxious everyday of my daughter's life? I already battle anxiety on a daily basis! But, of course, we have been reassured that most likely it's not degenerative so I won't even go down that path except to say, "Thank you God for taking care of my girl and knowing what's best for all of us."

And, looking at the other scenarios, in the end, we aren't losing out on much. Yes, number 1 would have been AMAZING but I'm not convinced that would have been the likely scenario anyway. I think it would be a toss up between 2 and 4. Again, I go back to knowing that we treat the symptoms, not a label. She's getting all the therapy she needs and we just thank God with every tiny step forward she makes.

The blow is also made much lighter in the event of a new development that happened this week: while we were denied from the UDN we were accepted into the Rare Genome Project!! This means that a whole genome sequencing will be done on our whole family for free! It'll take longer for results (6-12 months), it's not clinical so no one will be looking at her, they'll just be looking at her genes but we could potentially find out information from this as well. This is a major praise and God provided it right when we needed it. We had the interview yesterday securing everything for the project and then today I received the denial to the UDN. Again I say, God's timing is perfect. 

We are still taking comfort that God knows what our little lady has. He knows what she needs and we trust He'll reveal that to us when we need to know it. Sometimes I wonder why He can't fully equip me now with everything I need and then am reminded that the beauty of God's grace is that His timing is perfect and we can trust He'll supply us with every need when the need arises, He knows our needs better than us! 

I'll continue to update as we learn more. Right now this mommy brain is fried and needs a Friday night off! Praying you all have a blessed weekend and thanks, as always, for following along.