I remember the day the dr confirmed what I already knew-Kyle was different, and he would be different for the rest of his life. I physically ached and felt as if something was taken away from me. This wasn’t what I wanted for my son. This wasn’t what I wanted for ME. This was not in my plans. I felt sadness. I felt pain. I felt anger. I felt fear. It was the first time in my life that I felt grief.
I am genuinely happy and feel blessed that God entrusted me with Kyle. I really do. But I would be dishonest if I didn’t admit that grief creeps up on me at times-mostly when Kyle should be hitting a milestone…and reality slaps me with how truly different Kyle is. And I grieve for the son that was ripped from me the day that Dr kundell looked me in my very wet eyes, and changed my world forever, by telling me Kyle had fragile x. And 6 months later-autism was added.
Kyle is smack dab in the middle of puberty 😩 and turning into a young man. A man. It’s hard for me to even write that. I have tried not to think about this happening but a new reality is being forced on me. And it’s hard. Tonight was especially hard as I went through his night time routine. It was hard to brush his teeth and see traces of facial hair appearing on his upper lip, and know that he will never experience learning how to use a razor by himself. It was hard to see the physical changes that are occurring as I bathed my almost 14 year old then had to help him get dressed because he can’t do it himself. It was hard to have to put deodorant on for him because he lacks the motor skills to do it on his own. It was hard tonight knowing I had to lay next to my almost teenage son for 20 min in order for him to relax enough to fall asleep. It was hard to hear from Justin that homecoming is fast approaching and knowing Kyle will never experience a date or heartache or love. I’m grieving for the independence that Kyle will never have and the experiences he will never have. He is turning into a man phsically but his mind is still that of a 3 year old (or younger) in many areas. And it sucks.
Sometimes in these moments of grief I find myself feeling like my life is unfair. That Kyles life is unfair. And maybe it is. But I know grieving is an ongoing process-at least for me it is. And it’s ok for me to feel these things.
I’m LDS (mormon 😉) and we believe that through the atonement of Jesus Christ, we will be resurrected and our minds and our bodies will become perfected. I find such comfort in this. I KNOW that Kyle will one day have a mind and body that are in sync-Kyle will become perfected. Not in this life. And that’s ok. Even though I go through seasons of grief, I am able to live everyday with the knowledge that someday Kyle will wrap his arms around me and SAY the words, “I love you, mom”. I know all that I experience being Kyles mom is preparing me for that very moment. And boy do I look forward to that moment, cuz I know it will be worth the wait. Until then I will allow myself to grieve when I need to grieve.💙