I am a mom of three boys, and my 15 month old is having trouble with his motor skills (both gross and fine motor). He drools a lot, and sometimes stares out into space, peacefully, and that is when I 'lose' him.
I know we have connected emotionally, we are well bonded, but I am terrified of 'losing' him. I would fight tigers for this baby, yet I am completely heartbroken - devastated actually - that my son will be 'different'. My brother had gran mal seizures and epilepsy for 26 years before he died from SUDEP (sudden death in epilepsy). My memories of his days in school have set me emotionally sideways and I just can't stop thinking about his sweet little spirit getting pummelled by this cruel society we live in.
Please, someone tell me a story about someone with CP that had a good childhood, loving friends, and a happy life. All I can find on the internet brings me to tears, here at my desk when I am supposed to be working.....
I have a 15 year old soon with moderate cp, seizure disorder, mild autism. I totally relate to the passion and fears you have. While his life hasn't been the easiest he has needed multiple surgeries, his life is full and happy. He has been my only child and i have made sure that every experience had been the fullest for him. He loves movies, music. Plays on the Wii, loves joking with his family. Attends school and is very popular with his peers. He is in a scout troop where his troop adapts things for him. Loves camping and riding 4 Wheelers. My advice is don't let his disability disable him. Try to raise him a much like your other children as possible. I don't tell my soon he can't, only we will see how we can. This will change this summer when i give birth to my baby, but i will still raise him as i always have.
Thank you for sharing your son's story and some of the challenges (and triumphs!) you've been through. No matter what, my little TonyBear is accepted, loved, and supported. He has started therapy with the school district and is making some great strides, I am very very proud of him. He will be 18 months old this month and has an MRI scheduled this month as well. I am keeping my fingers crossed that what we are doing will help him live to his full potential.
Good luck with your new baby and I hope you are continually blessed, perhaps this time will be a little easier for you and your family.
Hope you update. I imagine your own childhood memories seep into how you envision your son's future. I have a teen with CP and I know my other kids have memories that will surely resurface as they have children of their own. For your family, "normal" will be yours to define. Good luck.
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