When we first heard about Glory, we were told she had hydrocephalus and global developmental delay. This was something that “appeared” to be obvious. We have put a lot of time into researching hydrocephalus and all that it entails. She was expected to need shunt surgery, and we signed on to assume that cost.
It has been determined that she does NOT have hydrocephalus. Celebration right?….
Not so much.
What she has now is a chronic brain bleed and brain shrinkage as a result of the pressure and hemorrhage. So, we have to prepare for the many unknowns. These types of brain bleeds are common in elderly people, but quite rare in small children. The most common reason for this type of bleed is shaken baby syndrome. However, there is a metabolic disorder that can cause it as well.
We do not know if she has the metabolic disorder.
Here is what we know….She’s our Glory and we love her. When I say that, I don’t mean I’ve fallen in love and going to “try” to make this work. NO, I mean every single person in this house has come to love this little girl across the world. We have celebrated the progress she has made through pictures each week, we pray for her, and Grace talks all day long about how happy she is that Glory will be here soon.
We know that her case is sever enough that the adoption agency is trying to expedite her adoption. Our home study will be complete tomorrow, and our dossier is complete minus the state seals and USCIS forms. On that note, USCIS has told the agency to collect all medical information they can about her, we then have to have a doctor write a letter about the severity of her diagnosis.
We know that if it is the metabolic disorder, we are facing quite a different life. She could have severe developmental delays, could have difficulty speaking and may need an AAC device, her muscle tone may be low and she could need a wheel chair, and she would need a strict vegetarian diet. She will need surgery to relieve the pressure and repair the hemorrhage.
Metabolic disorder or not, she will likely need a craniectomy. She could have seizures, vision loss, cerebral palsy, ADD/ADHD, emotional disorders, and immune function issues.
It is an unknown situation. It is possible that with early therapies, surgery, and diet, she could lead a fairly typical adult life one day.
What do you do in this situation?
We pray. We weigh the possibilities of her condition against our current life and how it could impact the children and family dynamic we currently have. We research the heck out of it, and consult neurology, family doctors, metabolic doctors, and the international adoption doctor.
We make a decision, and not lightly nor blindly.
Life could be severely impacted by Glory’s needs. She could need care that we are unaccustomed to, even with two kids with Down syndrome. It’s going to be demanding, stressful at times, and scary. It will require us to step even further out of our comfort zone, to rely fully on God, and to answer to those people who are negative about adopting a child that isn’t “perfect.”
Will our kids be impacted? Yes. Will it be for the worse? I hope not. I hope that our children learn to love as Jesus loves us. I hope our kids learn that people who require more effort on our part, are worthy of our compassion and respect. I hope our children learn to be less selfish, not value things of this world, and instead lead a life of service to others.
Service to ourselves does not lead us down the right path. There is nothing to be gained by fleshly living. If there were, then the wealthy and the self absorbed people of the world wouldn’t be constantly trying to buy more, make more money, prove themselves the be the best/hottest/thinnest/most athletic, etc.
When we die, we will not be remembered for the money we had, our youthful looks, how much we could exercise, etc. No, we will either be remembered as a good and faithful person, or a lover of ourselves. The latter has no legacy.