After Relief Comes Reality

So the relief of a diagnoses has begun to subside and the reality of the diagnoses is beggining to sink in. I pushed and pushed through the last 16 months of E's life to reach the point when all her health issues would make sense and I would be validated. It has happened now and I can say that she has VCFS aka Velo-Cardio-Facial Syndrome and partial DiGeorge Syndrome and it explains intricately every health problem she has ever had. It is a good feeling to know she will be able to get SSI and MediCal and that we will finally qualify for the assistance that we need in order to get her the medical care she needs. But then there is the pain of knowing that your precious child has a chromosomal disorder that is irreversible and permanent. My baby girl is considered "disabled" now and that is hard to adjust to. I mean, she will face challenges for the rest of her life, hopefully less and less as she ages and it will be D and I's responsibility to fight for her in the school systems and the medical realm. With D's job moving us so much, it will be important to fight to be allowed to stay were she is already getting great care.
I think in every situation like ours where there is a true mystery involved in your family member's health condition, you go through the euphoria at the diagnoses at first. You run around meeting all the doctors and you research the diagnoses on the internet until you know more than you should and you are just so relieved that you were right all along and it feels like a massive weight is lifted off of you. Then the reality of what the diagnoses holds starts it's way into sinking in. You have to face what it means for your loved one and for how long and what it will mean in your own life in taking care of them to the best of your ability. Then, in our case, you have to go through a sort of grieving process. Even though E is not dying or severely ill, she is permanently affected by this condition and it will be something that will make her life more challenging in multiple areas. Her development is slower, she speech and hearing is slower and impaired, she will have learning disabilities, she has a tube in her stomach to help her put on weight that will be there for an indefinite amount of time, she has a very high chance of mental illness. Also, all of her own children will have the 50% chance of having the same condition as she does on a much greater scale that could lead to their deaths within weeks of birth or at least heart surgery by weeks to months old. It is scary. Granted, I have been taking care of her without that information for 16 months already and so not much is going to change with the information except more help and less questions. I do however have to get her through these recurring infections and the failure to thrive with D's help and it has been really hard on us. Having a sick child takes a toll on every aspect of family life.
All in all, the relief is quieting down more and more and the depth of what it all means is setting in. We are now facing what it means and what we need to do. Good thing we have our faith in God to get us through because this is what faith exists for. To give you something to trust in and lean on and hope for when you know you have reached the end of your power to control or change things, especially when it is about your beautiful baby. And to think, she has the mildest version of this condition!