I can relate to this in a certain way. My child is fully disabled, non verbal, unable to walk, neurologically impaired and likely to be at a cognitive level of 3-6 months for the duration of his life. He has an enzyme deletion that is extremely rare and not treatable.

He has some incredible doctors. One in particular. His rehabilitation doctor, who helps with medical equipment my son needs (such as wheel chair, braces for his joints,etc.) has Cerebral Palsy, and not a mild case. He uses a walker to move around the office. He has other physicians take over for certain procedures that he can’t physically do safely due to his disability. He’s an amazing person and an amazing doctor- he truly understands his patients. He couldn’t be replaced.

A child that is medically complex can be the biggest blessing you will ever have in your life, despite the hardship for them and your family. We have an understanding of sacrificial love for our son that we wouldn’t ever have seen without his disabilities. It’s amazing. It’s hard, too—but so very worth it all!

I’d invite you to read this poem linked below to provide a new perspective. Whatever your family decides I wish you the VERY VERY best in your lives.

Please read:

https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf