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Put my mommy together again
Kiss her, pat her, mark her with "OK"
And help her smile sincerely today
I don't know where it springs up from. I don't know why it hits so hard. I don't know why, when I have such amazing little boys that smile at me, that need me, that make my world so beautiful, that I feel like crying. Most days it's just a fleeting moment. Some days it will last through the morning.
Today Alex has declared me a robot with a box on my hand. He just gave himself a banana trophy for being a giraffe that locked up monsters in his room -Then he married a T-rex. As I write, we are trying on fake mustaches.
As quickly as I felt that swift kick in the teeth, a switch is flipped and the weight is gone. The sadness, the pain, the forced smiles all dissipate and I feel more like the self I use to be. The person I was before my life of doctors appointments, home visits, sleepless nights, google obsessions and anxious overtones came to be. These things are still there, in the background, but for a moment I allow myself to forget, to relax and enjoy myself with sincerity. I thank God for these moments.
Jenny, Tia gave me the link to your blog, so that I could get updates on baby Gideon and the family.
ReplyDeleteAnyway, I would like to add that I know exactly how you feel. When Zachary was diagnosed with Tuberous Sclerosis Complex (TSC) I went through a lot of emotions, one being depression. Since the future outcome was "unknown". The amount of doctors and specialists we had to see every month made my head spin and became so normal that if we went a few weeks without having a doctors appointment, it felt extremely strange. Zachary has seen and continues to see a number of different doctors at Sick Kids (Nephrology, Neurology,Oncology,Dermatology, pediatrician, Optometrists as well as a cardiologist), he has also had and will continue to have EEG's/MRI's and ultrasounds to monitor the growths of Tubers within his organs.
TSC affects every person differently, some it doesn't affect at all and they go their entire life not knowing they have it.
Other people have a mild for of TSC, that can include behaviour issues,epilpsy, learning difficulties etc..
and some people have an extreme case of TSC where they are completely mentally and physically handicapped.
So, when Zachary got the diagnoses I was terrified because he was still so young and we were unaware of how severe his case of TSC would be. So I ended up becoming depressed and would feel the same way as you, one minute I was ok the next i was terrified about the future and what the outcome may be.
It wasn't until a year or so later and I say how well he was doing, that I decided to stop focusing so much on what the future holds and what "might" be and I began focusing on what IS and how well he is doing. As well as, all his accomplishments and stopped comparing him to other kids (yes I did that) and realized that every child is different and special in their own way and there truly is no "normal".
I am glad that Gideon is improving and he will continue to.
We love you guys xoxoxoxoxo
Thank you so much for sharing Krista! This whole thing had been such an eye opener for me and has really given me insight into the struggles that other mom's have gone through with their own special needs little ones. You guys have done such a great job with Zachary. Taking it one day at a time and focusing on the now is such good advice. Thanks for the encouragement!
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