cerebral palsy – Stefanie Lynn Creations

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.

*I write monthly articles for Alive East Bay Magazine. My goal is to provide positive information, resources and hope for all communities. I hope you enjoy March’s editio*n. 💚

The month of March always has me in deep reflection. As an awareness month to educate the public about Cerebral Palsy and all that this medical diagnosis signifies, I think about all that my 11-year-old daughter has survived. I think about what emotional turmoil my family and I have survived and about the many families with a special needs diagnosis.

While caring and awareness may be brief for some, the many “hats” that I must wear are the forever symbols of the delicate care I must incorporate, as life is now filled with priorities much different than those of mainstream society. It is a rocky path strewn with emotional, physical, financial, and medical challenges, but these bumps in the road can be faced with help from caring organizations like CARE Parent Network.

Founded over 30 years ago after the implementation of The Lanterman Act (laws to protect and grant equal rights for those with disabilities), CARE Parent Network is a family resource center that provides support for the disabled and the loved ones that care for them.

When my daughter was first diagnosed with Cerebral Palsy, a medical condition due to injury of the Cerebral Cortex (the part of the brain that controls muscle movement and function), I thought her world had been shattered into pieces, resulting in many future hardships. Families feel lost after being told by a medical professional that their child has a condition that will limit their physical or developmental ability. They can feel alone with their fears as they navigate medical terminologies, paperwork, and life-long commitments to readjusting their daily schedules—let alone the educational options and legal rights of which one must be knowledgeable in order to wear a respectful but firm hat of advocacy. While a parent cares for the child, CARE Parent Network takes care of the family unit, providing a network of supportive and informative options.

Whether through support groups or one-on-one support, CARE Parent Network’s staff are not only knowledgeable but empathetic, as they are, themselves, special needs parents, like program director Hannah Michaelsen. With a degree in public administration and the parent of a son was with Autism, Hannah was a volunteer for CARE for 14 years before becoming its program director. The most gratifying part of her job, she states, “is to share in a chapter where others are more empowered and confident because of CARE’s existence; to equip the parents to advocate and navigate not only the system, but their daily lives.” Through CARE, doors are opened to compassionate directions of understanding. They help clients navigate the intricate paperwork of IEPs (educational planning and goals) and legal rights, as well as addressing personal concerns and frustrations.

May the months that introduce awareness also introduce connections that inspire compassion and a purpose to create a sustainable and capable community; one where a disability turns into visibility beyond the fog that can overwhelm us.

The ribbon we wear this month is about being aware that there are people who do care. It is a ribbon worn not just once a year but every day. May CARE Parent Network continue to weave together all ribbons and teach families to wear them with not just pride but unwavering hope.

For more information, please visit careparentnetwork.org or visit their Facebook group page: Care Parent Network

Tag: cerebral palsy

Today, I Cry

Caring Awareness