Author: Kimberly Holmes Starlight Mom
At the age of two, Violet became really ill. She was slumping in her seat, body folding forward and she was unable to hold herself up or support her own head. She was paralyzed, limp and lifeless in my arms. Her eyes were rolling in her head and she kept falling asleep. We rushed her to the ER and the doctor was visibly scared. He insisted we needed to transport her to another hospital an hour away. I laid there on the hospital bed with Violet, holding her while she slept, crying quietly into her hair, and waiting for the ambulance to come take her away.
When you find out you are going to be a parent, you are filled with joy and optimism. The only true wish that you have is that the baby is going to be healthy, but what happens when your baby isn’t healthy or meeting typical age milestones?
When people find out your child has special needs the immediate response is pity and the inevitable “I’m sorry.” Although this is meant well, it’s important to know that as special needs parents, we are not sorry. Of course, we wish we could cure their pain or somehow make their lives easier, but ultimately, our children are perfect just as they are. Having Violet gave me the life I didn’t know I wanted. I think she chose us to shape us, bless us, teach us and make us more compassionate, patient individuals.
From birth, I always knew that something was going on with Violet, even before doctors knew, I knew. I stayed awake many nights, anxious, wanting to know what we were up against. She wasn’t meeting the expected milestones, but still the doctors assured me that she was fine. Violet wasn’t able to sit unassisted until about eight months old and she wasn’t crawling until about 15 months old. When she still wasn’t walking at that time, doctors finally started to listen. Now at six and a half years old, Violet is mostly non-verbal, functioning around a two-year-old level.
After many inconclusive tests, the doctors indicated that a muscle biopsy would be the next step to trying to figure out her mysterious condition. We had to let doctors cut into our baby’s leg and take a piece of her muscle to figure out what it was. It would leave a permanent scar, a symbol of her sacrifice to this disease. Weighing the pros and cons never outweighed the weight in my heart or the lump in my throat having to make a decision like that. Every test or procedure is just like that, too, that same agony. It never goes away. You will always wonder if you’re doing the right thing.
Waiting for results seemed so grueling. It was just days before Thanksgiving when we received the call: Violet had muscular dystrophy.
I researched endlessly, reading medical journals trying to figure out what was happening to my daughter. From my research though, so many symptoms still didn’t fit. There was still a piece of the puzzle missing.
At four and half years old, she was diagnosed through full exome sequencing with Alternating Hemiplegia of Childhood and Familial Hemiplegic Migraine type 2 due to a never before seen mutation on the APT1A2 gene. One of the main symptoms, which is always terrifying and unpredictable is periodic paralysis. What does this all mean? Violet has not one, but three one-in-a-million disorders. Still, after three rare diagnoses, doctors think they are still missing something.
There’s no way to describe the terror I feel daily knowing her conditions are progressive and lifelong. All three disorders have no cure and no real treatment, partially due to lack of funding because of their rarity.
Sometimes I feel like it’s too hard and I can’t do it anymore. It’s like she knows I’m about to throw in the towel and she grabs my face, looks at me, smiles and I just keep going. If she can keep going, I can keep going. Again, I remind myself that I am enough.
Despite being in constant battle with her body, and the inability to verbally communicate all her thoughts, Violet is a true beacon of light. She loves to sing, dance and high-five. Violet beams brighter than most, often seemingly carefree. She has joy in her soul, a smile that fills you to the brim with love, and she’s a true indomitable spirit. I am in awe and inspired by her every day. She motivates me to get up, to smile and face another day.
Some days are hard – hard being an understatement! But, those are the days that I look back to with laughter and fulfillment. They are the days that I cherish maybe the most (perhaps not always in the moment they occur), because they are memorable days spent with her. We may not know what the future holds for Violet, but for now, I will appreciate every day. When it’s extra rough though, I step out in nature, paint, have a bubble bath, enjoy lunch with friends or have a nice nap to reenergize my batteries.
To all the mothers out there, find your balance and know, YOU are ENOUGH! To those mothers newly on the journey of special needs parenting and those whom have been on this journey for a while now: I see you. You are a beautiful, radiant, wise and kind, an advocate and teacher who is strong but also human, that just happens to be blessed with being Mom to the bravest little humans anyone could ever know. Happy Mother’s Day!