Kids and A.S.








I want that to be very clear.  My kids are the greatest thing I’ve done with my life and I’d hate for someone to miss out on the crazy joyous journey because of A.S. 


I know …  what if they have the gene? I feel looking at the stats on that really help put it into perspective.  Only 10% of the 25,290,307 people with the HLA-B27 gene have Ankylosing Spondylitis.  The gene is not a diagnosis.  I do not have the gene and this runs in my family.  There is much to learn still.  My daughter has shown signs for about a year now.  She is 6 and that is exactly when people started noting my decreased mobility.  It worries me some days but I know the chances are slim and she is one tough cookie like her granny.  Even if she ends up with it I will be the one standing by her advocating and researching.  I wouldn’t wish this on anyone but that doesn’t mean I shouldn’t have had kids.  


I hear many Spondy Mom and Dad’s wonder if they should be more for their kids?  They think somehow that they are not enough.  I always wonder if my kids are forced to grow up too fast. Are they doing more chores than other kids their age? What about what you want to do with them but know you shouldn’t? Do you go for it anyways? I do on occasion and pay for it most times but I wouldn’t change it for the world. My kids are worth it!  Getting them ready in the morning feels like an Olympic sport some days! Playing can be difficult but we can always change the game.  Kids are kind and wise beyond their years.  We do not give them enough credit. I just had to find a way to explain why’s of my limitations and they quick to adapt. 


I have shown my kids the process broken down into pieces they can understand but just enough to avoid any fear. When they act like moms pain is their own it really bothers me and I quickly remind them they are not like me and don’t have to worry about that and it’s normal for people without chronic illness to have aches and pains here and there.  I have written a children’s book about Ankylosing Spondylitis in hopes of helping kids understand what is happening to mom and dad.  Once I get off my keister and get it illustrated I will share it. 


The way I see it our kids are growing up with more understanding of people with disabilities. They are learning responsibility and how to be a beneficial member of society. They know sometimes you just have to say no even if you really don’t want to. They know very well what determination and strength can bring. Most importantly they witness a love so strong by our fight to bring them the best through our pain. So I don’t think they are lacking anything in fact I think they are some lucky kids that are going to blossom into amazing adults.



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