In the earliest days of our Google dumpster dives researching Adelaide’s symptoms one word kept coming up: neurodegenerative. According to the dictionary it means: resulting in or characterized by degeneration of the nervous system, especially the neurons in the brain. The most well known neurodegenerative diseases are Parkinson’s and Alzheimer’s: conditions that typically affect adults, and mature adults at that. So why was this word coming up in searches for information about our daughter?
More than anything in this world, I am grateful for an incredible partner with whom I can share this life journey. For if we are placed on this Earth with a purpose, there is no doubt in my mind that Miguel’s purpose is to be a father and he exceeds at fulfilling it everyday. So, in celebration of Father’s Day, this seems like the perfect opportunity to dish on Miguel and why he really is as amazing as you think he is.
I have a confession to make: I’m leading a double life - or at least thats what it feels like. In one life I am the parent of an able-bodied and neuro-typical child, we go to little league games, do homework and fight about screen time. Then there is my special needs parenting life where I am measuring meds, counting seizures and managing medical, therapy and nursing schedules. At home these lives are intertwined but when I step outside of the house the stark differences can brew a social anxiety that I’m just now figuring out.
On Wednesday, Miss A proved once again what a bad ass she is when she underwent surgery to place a Vagus Nerve Stimulator (VNS) device in her chest and neck. In this week’s blog, I break down what this device is, what we hope it will do and why I broke my oath to never put Adelaide through another invasive procedure.
Adelaide is having a surgical procedure next week and the pre-op appointments this week are A LOT. So, I called in reinforcements! Last month you go to meet my mom, this week you get to see our journey with Miss A through my Dad’s eyes: a little salty, very cautious and all heart. Please enjoy Grandpa’s POV.
After the overwhelming response to last week’s post I realized a follow up was needed so this week I start there. But life doesn’t stop while we’re discussing socially charged issues and this week it was announced that Hamilton would be closing up shop in Chicago. Despite, in spite or because of Adelaide’s challenges our time in Chicago has been pretty incredible. Do we stay? Do we go? Time will tell but if you’ve learned anything about us you know we’ve got this.
This was a challenging post write and may be a tough one to read. I ask that you please read in full and that you keep an open mind. With Mothers Day around the corner we celebrate those that gave us life and enjoy being celebrated by our own children. But we are also reminded of those who have lost their mothers, or who have lost children, or pregnancies, or who wanted to be mothers but it wasn’t meant to be. I am the mother of three children, although, I only ever met two of them. Miguel and I made an impossible decision nearly five yers ago and while I’ve never kept baby Elvis a secret, I realize that now more than I ever, my experience - especially with the perspective of a special needs mother - needs to be shared.
Monday, May 6th is Nurse Appreciation Day and, girl, do we have some nurses to appreciate! I am often asked how I am able to do all I do. There is only one answer: I could not do any of it without our amazing, caring and dependable nursing support. There is a full roster of medically trained professionals that go above and beyond to make sure that Adelaide is living the best life available to her. They are Adelaide’s Army.
I used to envy the way Jackson could see Adelaide without the sadness that tinged my view. However, as Jackson is getting older he is gradually beginning to understand how Adelaide is different from a neuro-typical sister and it pains me to watch the sadness and worry creep into his life. There is no question that their special-needs sibling bond adds so much to both of their lives but like everything else in this parenting circus it is a balancing act. A really stinking cute balancing act, but one all the same.
I’ve had a love/hate relationship with social media for years. When an old post I’d written came up in my Facebook memories it reminded me how far I’ve come on this special needs parenting journey. Navigating the emotional minefield of a social media scroll used to be excruciating and, honestly, still has its moments. But as I’ve connected with more and more special needs families the isolation and loneliness I once felt has been replaced with warmth and community. Grateful everyday for my cohort of fierce caregivers who are a constant reminder that no matter what challenge, emotional or otherwise, we experience we are not alone.
I remember sitting across from my mother at dinner one night as she finally let me see how Adelaide’s health was emotionally effecting her. I was floored to learn that she grieved not only for Adelaide but for me as well. Since then, I’ve connected with a number of special needs grandparents who have expressed to me their feelings of helplessness and grief but also that they didn’t feel that there was a space for them to express this. With that in mind, I asked my mom to step in this week and share her experience from the Grandma POV.
I have been struh-uh-ugling with the realization that Adelaide is physically growing up. I mean, who gave her permission? I realize this is something all parents have a hard time with as I experience it regularly with Jackson whenever he does something on his own that used to require assistance or, lately, when he requests his privacy. Selfishly, it can be hard to watch our kids need us less but we want them to grow and flourish, to be strong, independent individuals. But what happens when your child looks older but developmentally isn’t aging at all? How do you still celebrate physical growth with the absence of the mental/intellectual?
