It goes without saying that I miss you so badly my heart hurts, and I cannot believe still to this day (three years later) that when I pick up the phone to call, you will not be there. Some days I can deal pretty well with this, but others I just ache to hear your voice and wisdom.
But so much has happened in three years since you’ve been gone, and I wanted to fill you in. Although we both know you are watching every step we take and every moment we are here without you.
The last three years have been full of change for my family. Good, bad, different – but change nonetheless. After you left, I took Shea to Minnesota to be evaluated for a huge spinal surgery called Selective Dorsal Rhizotomy. My mind was full of the “what if’s” and the “hows” to managing life with a child in the hospital for 6 weeks in another state. My beautiful sisters were right by my side, keeping me strong and helping me through this process, and figuring out the “how” to make it work. In the end, it was not to be, and she was denied surgery. After the doctors left the room I sobbed, not able to see what was ahead, but feeling the opportunity for my girl to walk one day was taken from me.
But low and behold the future was much different than I thought. Shea apparently was misdiagnosed at 9 months, and did not have the brain scarring we thought she did as a result of the whooping couch. She now has a new diagnosis, which led to more MRI’s and a CAT SCAN, and more testing – and a very scary meeting with a neurologist who told us that she was so much more than was expected. Apparently not knowing that she was not supposed to be able to do anything she currently does, is what saved her. Ignorance is bliss !! We thought she could do anything and now she does.
After that meeting which knocked my socks off and took the ground out from under me, we had a new appointment, where it was determined she needed surgery. Major, painful, orthopedic surgery to de-rotate her hips, put steel plates and pins in, and lengthen all of her leg muscles at once. I have never needed you more that those days following her surgery, when I sat in her hospital room watching her scream in pain from muscle spasms in a full body cast with both her legs cast. I didn’t want to be the Mom. I wanted my own Mom.
This is what I have found raising a child with a disability. I so often don’t want to be the Mom, or can’t believe I am the Mom. I want you to come and pick up the pieces. I want you to be the grown-up, and to make everything better, and to shoulder the pain and worry of raising a child. I want you to be the responsible one I sometimes wonder if I am strong enough to be. And to be without you here.
Shea is thriving now. Tons of therapy, tons of doctors appointments, a wheelchair now to get around, puberty and growing up and all the fun that comes with that. My kids are growing up without you here to watch. They are becoming their own people, and they are extraordinary. Strong and compassionate, and driving me crazy, and falling and getting up, and learning to be people. It is both exhausting and exhilarating to watch.
But I miss your smile when you look at me, and when you looked at them. I miss your laugh, I miss your joy in life and your spirit. I miss you words of wisdom that I always let pass until they sank in and I realized you were right. I miss laughing with you so hard that no sound came out. I miss everything. I am a girl who needs her Mom, and now I have two girls who look at me the same way.
I am now their everything. They look at me for strength and to pick up the pieces. They need me to be strong and to be here for them. They need me to pick them up when they cry and to laugh so hard no sound comes out when things are funny.
I love you Mom, and I miss you every single day. But since you’ve been gone our life has continued and has changed, and all of it is wonderful and exciting, sometimes hard, but always interesting.
Love You To Pieces,