This month to raise awareness of Spina Bifida I will be answering ANY and ALL of your questions about how SB affects Mason, my other children, my marriage, my extended family, and life in general. All you need to do is ASK. So leave a comment and start asking your questions!
October also holds a very bad trend in Mason's life and we'll hopefully celebrate a 'shuntiversary' this month marking 1 year since his last shunt revision. Every October of his life Mason has had emergency brain surgery to replace a clogged shunt. Can this October be different? I'm praying that it will be!
We have a 14-year old son that was born with a major heart defect. He has had numerous surgeries as a baby/toddler to modify his heart but it cannot ever be corrected. He has no physical limitations, but his life expectancy is shortened. He will likely live to be an Opa (grandfather), so still, not a terrible prognosis. He is fully aware of all of this now and it does not seem to bother him at all. As a toddler, going to checkups or having diagnostic procedures done, this never seemed to bother him then of course either. But I am curious.... Mason's abilities ARE somewhat limited (his tenacity amazes me!) and he has SO many more medical appointments than my young man ever did.... does any of this seem to bother him at all? Is he frustrated sometimes that he can't do things his siblings (especially his younger brother) can do? Or does he seem to just accept it as the way it is? How much does he really understand the implications of his condition at this point? Or do you take the approach "when he's old enough to ask, we'll give him a simple answer... if he needs to know more, he'll ask more"?
ReplyDelete(I do NOT need to ask "Is he happy and enjoying life?" because I believe he does, very much, enjoy his life.... I'm just curious if his condition worries or concerns or frustrates him at all. And I don't believe that having worries or concerns or frustrations is necessarily a bad thing either... trials in life ideally draw us to our knees in prayer and help us grow in maturity).
Christine (from Ontario... proud mom of 9)
I think my main question is how this illness in your child has effected your marriage... I know how illness can effect all relationships.
ReplyDeleteHow do you explain Spina Bifida to your younger kids (Like Caleb and Daniel)? How does Mason do with all of the doctor visits therapies? How does he(and you) deal w/ inaccessible places. Oct is a great month, its Spina Bifida Awareness Month, Down Syndrome Awareness Month, Lupus Awareness Month, Breast Cancer Awareness Month, and AAC(Augmentative and Alternative Communication) Awareness Month. My cousin's 5 year old daughter has SB, my 17 year old niece has Down Syndrome, my sister in law has Lupus, my older sister is a 6 year breast cancer survivor and my 6 year old son Tyler has dyspraxia including apraxia of the speech and uses the Speak for Yourself app on the Ipad Mini to communicate
ReplyDeleteWhat are your plans for school? Will your school district help with therapies and equipment?
ReplyDelete