Since Jude was born, I have been told many different things and asked many questions. Some being “He has a lethal diagnosis.” “You just don’t know how long you have with him.” “He may not make it through infancy.” and “Have you prepared yourself?” I have spent nearly three months pondering and facing these questions and assumptions every day.
After seeking the Lord and also believing in my son, my answer is that I have prepared myself and my heart of the reality that Jude has some things we need to deal with. We face challenges daily and the care for him is intense. Jude has a top notch medical team working with him, he has many appointments and procedures, and he is on many medications, has had two surgeries and has more in his future. He requires speech, occupational and physical therapy every week, he has cervical stenosis which requires him to wear an aspen collar and he is also on a feeding tube.
But one thing I can say is this; I do not look at Jude and see just the fact that he has RCDP. Jude having this genetic disorder does not and will not define who he is. I don’t look at him and wonder how long I have with him, I look at him and I am thankful that he is alive and well. WELL, you ask? YES, WELL! Jude may have some issues that require extra attention and he may deal with pain from time to time. But Jude is here, he is breathing, he is fighting and he will continue to fight.
So I don’t look at Jude and see his disorder, I will not find his identity in that. I look at Jude and I see a Brave Little Warrior. I will not put an expiration date on my baby. And I am so proud that he has already far beaten the ones that medical professionals tried to put on him.
I know that God is the ultimate physician; no earthly man can tell me what is going to happen. Jude has proved to be a fighter and I will continue to fight for and with him and give him anything he needs.
So no, I am not preparing for the worst. I am praising God for the best that I have already seen.
I will praise him because Jude is fearfully and wonderfully made.