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Today, I Cry

Today, I Cry

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 everyday 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 that wants to make Tik Tok videos, wear mommy’s make up 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 n puffs when I try to help her. So, I put on a mommy smile and continue 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 had 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.  

Alive East Bay Magazine

Mind Over Matter

AliveEastBayTaylorTealPicJuly2019

During one of my “productive” bouts of checking my social media newsfeeds, I came upon a post by this awesome woman that was for families of young stroke survivors. Her post brought tears to my eyes because I am part of this flock of parents that still can “lose the wind” under my wings as I try to stay above the tough moments so that I can protect and be there for my ten year old daughter who shares the same medical mountain of being an en utero stroke survivor. It gave me chills that I was given an emotional refill of hope for my daughter’s future because of the gift of another’s triumph and courage to share their story. The mountain is never climbed alone. I read her post over and over again, knowing that her words had to be shared. May her story remind us all that our fears of the unknown are not the authors of our lives. Our story is not done. May we remember what truly matters—that only strength, hope, and love have the final say.

My name is Taylor Teal and I live in Denham Springs, Louisiana. I am 22 years old and a pediatric stroke survivor. Shortly after birth the nurse noticed I was having episodes of asphyxiation and I was tested for various conditions. After twenty-two hours it was determined I had a stroke in utero and was having seizures as a result. A CAT scan determined one third of my brain was severely damaged. Due to the amount of fluid on my brain, the doctors determined that the stroke had occurred at least 7-10 days before my birth.

My stroke caused the left side of my body to be very weak. I have limited use of my left arm or hand and I also walk with a limp. I started physical therapy at one month old and continued to do it until I was about 15 years old. Due to not fully being able to use my right arm and hand, I had struggles throughout my life and still do at times. Most of my struggles were physical tasks such as getting dressed, tying my shoes and blow-drying my hair. Some tasks I still have difficulty doing are opening things like water bottles, cutting food, picking up heavy things, and putting on jewelry.

As I got older, I taught myself how to do most everything by using one hand, like tying my shoes, dressing myself, and putting my hair in a pony-tail. Although I had struggles, my parents always found ways to help me do things my way. When I couldn’t ride a bike, they got me a tricycle. I wanted to play softball like “normal” kids, so they helped me learn to play by holding and swinging the bat with one hand. Those are a few examples.

It is important to think outside the box when it comes to figuring out how to do things, even though they may not be done the way an individual with no medical limitations would do them. I have always had high spirits and been very determined when it came to overcoming obstacles. Some negative effects on my family are that they constantly worry about the things I have a difficult time doing and how I will do certain things as I get older. A positive effect for them has been to see how strong, independent, and determined this has made me.

My experience of being a pediatric stroke survivor hasn’t always been easy, but it has made me the person I am today. I often wondered growing up “Why did this have to happen to me?” I wanted to be normal like other kids but knew I never would. I would just always remind myself that God made me this way and He did so for a reason. He knew I would be able to handle this situation and overcome so many things for which I am forever grateful. I am inspired by others I meet who are going through similar struggles in life and finding ways to thrive.

This past May I graduated college, earning a bachelor’s degree in Human Development and Family Studies. This has been my biggest accomplishment thus far in life. I am now working for a case management company as a support coordinator for people with special needs. I have always been extremely passionate towards individuals with special needs due to my own situation and the many years of being around others with special needs at therapy. I always knew I wanted to do something involving people with special needs and I am so thankful I am now able to do so.

My advice for individuals with special needs is to not let your situation define you, because it absolutely doesn’t. One must never give up no matter how frustrating or hard it can be at times; you can do anything you put your mind to. It is okay to be different and not “normal.” This was very hard for me to accept when I was younger. The older I got the more I realized that just because I am different, it does not mean that I am not able to do the same tasks or activities. My advice for families of those with special needs would be to never lose hope or give up on them. They need your help and support more than you know, so always try and stay positive. Even though it may not be an easy road and there will be difficult times, find the good in every situation. My advice to mainstream families would be do not treat those with special needs any different than any other individual.

Last but not least, always accept those with differences because it is okay to be different.

For more information regarding pediatric stroke, please visit: https://pediatricstrokewarriors.org/