Dealing with the Diagnosis

We did receive a final diagnosis. Nathan is a confirmed case of 5p-, or Cri du Chat syndrome. About 40 or 50 babies are born with this in the US in a year. From everything the geneticist told us about where the break in the chromosome occurred, he has a pretty severe case. The big challenges for him will be feeding, walking, speech. He will have cognitive impairments. The most development kids with this can attain to is about the age of about a five or six year old child. I will most likely be living with an adult child.

My tendency is to resign myself to the fact that he won’t even get to the development of a five or six year old since they are saying his break is severe and since we are making nearly NO progress on feeding. In fact, he had two episodes where he started choking and turning blue right in front of me while the nurse came running to suction him with a special machine. We weren’t even offering him any milk. He just choked on his own saliva. Then again this Tuesday he had a big apnea episode and stopped breathing for a few minutes while the nurses had to resuscitate him. That was severe enough that the doctors decided it was time to transport him over to Dell Children’s hospital on Wednesday. I feel in no way equipped to bring him home. But we are starting to need to make a decision about leaving on the NG tube or insert a G tube. I’m just getting tired of the commute and trying to bond with this baby who is incredibly frustrating to me at times and overwhelmingly sweet at others.

We’ve had some real insensitive doctors and had to “fire” one last week. I know their job isn’t to provide us with hope but since they know almost nothing about this syndrome, what they do have to say often times isn’t really that helpful. “Men are unreliable and lighter than air.” (Psalm 62) “God’s knowledge is beyond our comprehension.” “Certainly you made (Nathan’s) MIND and heart; you wove (him) together in his mothers womb.” If one more doctor tells me I am going to need a home health nurse to take a shower or do my hair I’m going to lose it. Besides the fact that I’m still pumping and a person could quite possible go crazy from that alone.

On a good day, I am surrendered to God’s plan for this child and our family, trusting that it is indeed good. I expect God will help him develop in some way. I will continue to petition Him for best case scenarios, miracles and blessings. But even if He does not, I am still thankful for this baby. It’s strange that you can love your baby so much and feel so incredibly sad for him at the same time. I don’t know what He was thinking when He chose me to be Nathan’s mommy? I can’t even look back and say “I wish we didn’t try to get pregnant.” This is all one big divine plan I can’t control, no matter how hard I try.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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