It kinda snuck up on me this year - it's our anniversary. Five years ago today was the first day I ever heard the words Infantile Spasms. Five years ago today was the day I was told my baby would never walk or talk. Five years ago today Camilla was given her first dose of antiepileptic medicine (AED). Five years ago today she had her first EEG. Five years ago today we lost hope. Five years ago today we lost a very important part of our baby - we lost her future.
From the moment I learned I was pregnant (and honestly since I was a little girl) I wanted a little girl of my own. I dreamed of her being a dancer, a gymnast, a cheerleader, seeing her walk across the stage at graduation, seeing her Daddy walk her down the aisle and seeing her raise babies of her own. Oh what a joy to think about these things and on the tough days of my pregnancy I would just sit and dream of all of the good times we would have. Five years ago today my dreams changed.
Many parents of special needs children go through the five stages of grief upon learning of their situation - 1 denial 2 anger 3 bargaining 4 depression 5 acceptance. I recently read an article about a mother of a deaf girl who went on and on about how she went through these stages and how excrutiating it was and my heart just went out to her because I knew her pain. She then went on to say that two weeks later she arrived at acceptance and they just regrouped and went on with their lives. Wait a minute - two weeks? Well I am truly proud for SUPERMOM but that was NOT ME. Here we are five years later and I finally feel that we are arriving at acceptance. I finally feel that we are finding Camilla's future once again.
Just a look at what my 'baby angel' has been through in the past five years:
11 EEG's: 20 mins to 72 hrs in length
3 MRI's
1 lumbar puncture
genetic testing
AED's: Phenobarbital, Lamictal, Topomax, Keppra, Banzel, Clonazepam, Depakote
Other meds: L-Carnitine, Clonidine, Adderall, Risperdal, Melatonin and a WIDE variety of other herbal and vitamin supplements (pills and injections)
Ketogenic Diet - 2 years (the only thing that has EVER helped to control seizures)
Vagus Nerve Stimulator
4 hospital stays
Gluten Free Casein Free Soy Free diet - 9 months
Corpus Callosotomy - to be scheduled for May 2011
In looking back at each of these events or meds I am stunned by how good she is through all of this. She takes her meds with applesauce and I don't think she has EVER fought me on this - she just knows they go with breakfast, dinner and sometimes lunch. Some of the tests have been trying but she still gets through them all better than I probably would. I really am amazed at what a trooper she is and how she can remain sweet and loving through it all.
I'll end by sharing her official diagnosis'
1 Infantile Spasms evolved to Lennox Gastaut Syndrome
2 Severe Global Developmental Delay including Mental Retardation (provisional)
3 Autism (provisional)
*provisional just means it's all a result of the IS/LGS
Five years ago today - my whole world changed.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Jeremiah 29:11
4 comments:
Kelly and Brandon,
It is amazing the strength that God has given you two in dealing with all of Camilla's seizures. I can't imagine what you must go through but will be praying for you all and for your upcoming appointments and surgery. I will add her to our prayer list at church if that is okay with you. God definitely has great plans for Camilla and he is using you both as her parents to facilitate His will for her. I will gladly help at any time if needed. I love you all!
Oh Kelly..I started crying as soon as I read this! I think about that day, 2 days after my Parker was born and hearing those words come out of that doctors mouth. I have never hurt like that before. I had 2 healthy children.I expected him to be as well.. you have so many hopes and dreams for your children.. I see other little boys his age doing things that MY LITTLE BOY SHOULD BE DOING but he isn't. Im not the "supermom" either. Seems just when you think you have accepted things, the smallest thing brings it all back to the surface. My heart has never hurt so badly. He is a wonderful, beautiful little blessing, just as your Camilla is to you. All of these syndromes and lables.. I HATE THEM! He's my baby and he IS perfect in his own little way. And every fight that we as parents of children with special needs fight is worth every second..Love you girl!
Shannon Etheridge
Kelly, your faith is such a testimony! As I have said before, you are both amazing parents and God knew you would be! Camilla, you and Brandon & the entire family continue in my prayers daily!
Anne Bridges
Our "5 year anniversary" will be May 10th. I am with you on the 5 stages of grief. I think I'm teetering between depression and acceptance. Some days are better than others.
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