Step into my shoes

I’ve been doing a lot of thinking this past month.  We have presented to both Park Districts and we continue working on our presentations and talking with other interested partners.  What I realized is that it takes time for people to truly step into my shoes.  Taking the step is a hurdle but then I have to stand next to them and help with balance until it hits them…..OH SHE HAS A POINT.

I have a child with a diagnoses of Down syndrome.  I have a child with a seizure disorder that morphed into the worst seizure type a child can have.  I have a child with special needs and a busy 12 year old that is running my patience ragged, but I manage it quite well – at least I think so.  I am not a victim.   I am not interested in your pity and I don’t want anyone to feel sorry for me or Larkin. 

What I do want is your empathy.  I want you to SEE what is going on quietly around this town.  Open your eyes to those who need a boost by you taking the time to play, listen, read and maybe just have a cup of coffee while our children play with each other.   There have been a lot of articles in the paper lately and in periodicals about how our children are way too programmed in their days.   Free play – meaning just taking the time to let your children engage in whatever activity they wish.

Larkin and I have been spending a lot of time at the pool.  The weather is great and while it’s too hot for me, she can maintain her body temp better in the hot sun while in the cool water.    It’s been about a week that we have gone every day.  I put on a suit (blech) and I sit in the baby pool with her.  In the week Larkin has gone from hanging on the edge and stimmin in the water to realizing she can move herself around and try an stand up on her own.  I encourage her by taking her out of the pool and we walk (with my holding her hands) to the pool.   She gets so excited to get to the water and laughs and laughs. 

The exciting news?  Yesterday (Father’s day) she stood up – balanced – and took 3 steps all on her own.  WOOOOOO HOOOOOO.  DO YOU HAVE ANY IDEA HOW EXCITING THIS IS????   I am still screaming inside. 

The even more exciting news?  There was about 10 people who saw it and were cheering and UNDERSTOOD what my girl was trying to do.  Their typical kids were playing all around us and Larkin achieved a milestone!!!   My girlfriend Jen asks me across the pool “Is there a baby pool in town where she can go year around?  She is doing beautifully in the water and this is what she needs all the time.”  

No there is not a pool where we can do warm water therapy.  The indoor pool in Urbana is not heated to the level necessary – 94 degrees.  The indoor pool in Urbana has open swim hours for the public during her nap times and our dinner times.  1-5 and 7-9.   Yeah you wake a toddler up and say “let’s go do therapy in a colder pool while you are sleepy” and tell me how far you get. 

So come stand in my shoes for a day or a week – the beauty of it is this:  You will hear giggles that you can’t help but join in with, you will see a child who progresses and she will throw her arms around your neck tighter then you ever thought possible.   You will see kids with special needs can give you something.  You will see the NEED for an inclusive environment that encourages free play.

 I got my shoes with the birth of Chase.  Just having a child comes with enormous responsibility.  Those shoes got a lot bigger with Larkin and I cried thinking that I couldn’t possibly fill them.  I suffered through growing pains plus days and nights when I threw fits and didn’t want to wear them anymore.  Weeks in the hospital hearing doctors tell me things I DIDN’T WANT TO HEAR…but these shoes are amazing.  They balance me.  They keep me grounded.  They force me to become a better person and parent.   Come stand in my shoes and I will help you balance and pretty soon you will see that wearing them can be comfortable and they are magic.  Magic – because while they do all the other things I mentioned, they also open your eyes and improve your vision 🙂