My heart cried tonight.
It cried really really hard. It cried big gulping soul wracking sobs.
Sobs that left my heart aching. Sobs that left my heart feeling like it had shattered into pieces. Sobs that reminded me that the fragile dull heart breaking pain that has lived inside of me since learning of my son’s diagnosis is still very much there.
A pain that seems to just lurk there dormant deep down till random moments come along that awaken it and bring it to the surface with such intensity that I feel like I am just receiving the news of his diagnosis all over again instead of five years having gone by.
This soul wracking, heart breaking pain made its presence known tonight.
It showed up as I was prepping for my son’s Valentines celebration at school. As I sat there signing his name on the cards for him to give to his classmates, I realized how sad I am that he’s not yet able to fill the cards out himself.
Recently I had seen a picture of a friends son the same age as my son making Valentine’s Day cards for his classmates and at that moment that picture floated thru my mind. It made me think of how wide the gap between him and his peers is becoming and that many of his classmates will be signing their own names or even making their own cards this year.
It made me think of how helpless my son is.
And not helpless in a “I pity him shame on me for saying that” way, but helpless in a “I am his mom and his main caregiver and I know intimately how much assistance he needs for even the simplest of tasks necessary to life, not to mention extras like filling out Valentines Day cards.”
It breaks my heart to really honestly acknowledge his helplessness and to allow myself to really face it.
I feel sometimes like I’m not supposed to say how sad I feel about him not being able to do so much, but it honestly breaks my heart.
I’m so sad he has such extreme disabilities and I so wish he didn’t. It’s so hard to watch him try to do things or want to do things that his body just doesn’t allow him to do.
I feel it’s frowned upon and not necessarily very politically correct to admit these feeling but this is honestly just how I feel.
Feeling this way and acknowledging it doesn’t mean I don’t love my son or that I’m not grateful to be his mom or that he doesn’t also bring me a lot of joy. And it certainly doesn’t mean he’s less valuable than any other person.
It means it’s hard to watch your child experience these challenges every single day and not feel any sadness about it and not wish you could change it for them.
So tonight as the magnitude of the challenges he faces hit me, my heart just cried, trying so hard to rid itself of a heart break that really no amount of tears can ever wash away.
The Lord is near to the broken hearted and saves the crushed in spirit. Psalm 34:18
I have been going through similar emotions regarding my son’s speech delay. I read about other kids his age having conversations with their parents or starting to ask questions (even questions about their disability) and just feel such an intense longing to communicate with my son and so much pain over his delays. At the same time, just like you said, I feel like I’m not supposed to admit those feelings– like people will think I must not appreciate what my son is able to do or will think I don’t value him as much, as if I’m wishing he were someone else. But I think we have to be honest about our feelings and I think any special needs parent, if their being completely honest, would admit to wishing that life could be easier for their child. I’m with you, lady. This SN parenting gig is hard.
It is definitely a hard gig. Delays in speech or lack of speech is definitely one of the harder parts of this SN parenting thing to contend with. Your comment really resonated with me, thank you very much for sharing the challenges you are experiencing in your feelings as a result of your son’s speech delay and being open and honest about how it makes you feel. Although I wish things were different it is so helpful to be reminded of and know that we are not alone on this journey. Thank you so much for sharing. I really appreciate it.