Things stir within me, things that I do not want to acknowledge and try to suppress. Those things are emotions. I am the mother of a special needs daughter and every day for the past twelve years I have blamed myself for the medical trauma she endured. I have a hard time sharing from the deepest, darkest core of my being. I vary between the extreme of masking my pain and fear with morbid or goofy humor, to isolating in my home not returning phone calls, to ruminating on how no one seems to understand my life as a special needs mom. My daughter survived an enutero stroke before she was born and my grief, though not as raw, still lingers; a scar that is supposed to symbolize healing, yet I still feel the sting.
I knew I had to type this today because I feel like I am going to implode sometimes. My daughter is now 12 and I know I should be grateful that she is alive despite the excruciating option to take her off life support. I know I should be grateful that she met every milestone I would obsessively worry about at each stage of her life. She is at the tween stage now and new worries surface. It is like if I am not worrying, it means I am not caring. I do not know how to not worry for her. What kind of mother am I to look at her and only think about how I wish the stroke had never happened to her, that I did not do enough then and I am not doing enough now? My husband tells me I did nothing wrong; it was the powers that be. I did everything right when I was pregnant, he says. His voice is just a faint echo as I navigate through this mental fog. How could the “powers that be” allow something to happen to a life that did not even meet the world yet? My daughter is becoming aware of her struggles, especially with math and comprehensive reading skills. She has a heart of gold and does not yet know, or may never fully understand, the meaning of her diagnosis of mild cerebral palsy and that she is in a special needs class. In her eyes, she is just another girl who wants to make TikTok videos, wear mommy’s makeup and perfume, be independent, and do her own hair while balancing the fact that she needs extra help doing certain things. Her tween stage of struggling self-esteem is the underlying reason why she huffs and puffs when I try to help her. So, I put on a mommy smile and continue to speaking positive affirmations to motivate her.
Today, I cry.
It isn’t because I am not proud to be her mom or don’t love her unconditionally; it is because I ache to rewind the time. I ache to have somehow known that the kick or twitch I felt as I carried her was the stroke and not just her trying to make room in the space that was her home for 8 ½ months. I am a special needs parent who prays she is not one day ostracized or rejected because she processes things differently. I pray that she will have that one best friend who will have her back no matter what. I pray she is not bullied. Yet in the same millisecond that I ponder over the “what if’s” that cause the future trips from hell, I filter through the insecurities that stem from my own childhood traumas that may be possibly overshadowing the next chapter God is writing for her. I am forever in debt to God listening to my prayers while she was in the NICU as the staff questioned if I was in denial. They did not state that directly to me, but I was told later by people whose names I can not mention. Am I in denial now? Am I in denial that this really happened to her and that one day she will catch up? Or am I in denial of accepting the beauty of who she is today? I am a mom of a child with mild cerebral palsy who has achieved and survived so much during her short time here on earth so far.
So why do I cry today? I cry because grief is not linear. Grief is not limited by time. Grief is repeated layers that stack up if I do not look at them directly. I will always grieve for the life I envisioned for my daughter before her brain trauma as I let her create her life. I will always have these moments that will sprout up like a weed. The weeds do not go away if I do not have a good cry occasionally. The weeds will fester and send me down a rabbit hole of despair and depression for what happened to my child. The weeds will have me snarling at any child or adult that I think is treating her through a stigma lens of ignorant stereotypes. Yet I can not force people to see the wonderful, kindhearted, humorous, and beautiful woman that she will soon become. I must let go of my own self-demoralizing cave in which I tend to reside.
Today, I cry.
She will never see my tears for her because if she does not see her diagnosis as a hindrance, I must come to terms with not trying to eliminate the stages of grief. I must stay on the road to gratitude along with these emotions. But in the meantime, in these moments that I pull out the weeds, I will let myself purge.
So today, I cry.