On april 7th a brand new piece of adaptive equipment was released, It is called the Upsee .
It uses straps and harnesses to help a child walk with the support and power of an adult. When I first saw this a few months ago it was a product a mom from one of my online support groups was trying to get patented. I loved it even then, and made a mental note to keep my eyes out for that thing!!
low and behold a few moths later she was approached by a reputable company who wanted to produce and sell her design, and the Upsee hit the market in the first part of April to a crowd of very excited parents.by April 9th my Facebook news feed was FULL of pictures of kids around the world getting to experience the world from a first person perspective. it was absolutely beautiful.
I am not sure that mothers of "typical" kids really realize how many things are not a part of our childs life. Its not something I would ever hold against them though, I know I never thought about a lot of this stuff until I HAD to.. so I totally get it. (and that's why I tell you guys! )
However just think about this.. NEVER a single day of sophias life has she had a change to stand on her own two feet and walk up to a flower, a tree, or a fence . Never has she gotten to walk down the street on her own and feel the sun on her face and feel the gravel under her shoes.. it breaks my heart to think about how every experience she has ever had has been in the arms of another person 5 -6 feet in the air, or strapped into some seat detached from her environment, or inside some big crazy frame stuck dragging a ton of extra weight just to move at all..
one morning I decided I HAD to make this happen for her. She HAS to be able to have this experience. It suddenly meant everything to me to be able to give my child that chance. But there was only one very large issue. it is a 500 dollar piece of equipment coming from lisband Ireland or some crazy European place. Turns out I don't have 500 dollars laying around .. and it would take nothing short of a small miracle to get it. I am never without something I need.. ever.. but rarely do we ever have money for things we just want... wants aren't a big part of our family.
A fellow special needs mother was using a fund raising website to help raise funds associated with medical equipment and home improvements to help the baby. They encouraged other mother who may need help to lower your sword of pride and ASK FOR HELP... She had such an overwhelming response that she said there must be more good people out there that want to help our kids, who are we to stand in their way..? just TRY.. put it out there.. so I took one very deep breath and disarmed my super mom pride.. and created a page.
I just put a small bit of information up about PCH and Sophias fight against it, a link to our blog and a few photos of that irresistible smile... along with a very humbled personal message from myself asking for help to give Sophia an experience someone who fights as hard as she does deserves.. it hurt me to have to admit to everyone that I could not do something for Sophia. It isn't something I normally would ever admit to.. ever...
then something incredible happened....
EVERYONE.. well seemed to me to be everyone.. started sharing our link and circulating the word amongst their loved ones.. and family and friends and even people ive never even spoken to were all rallying around my little girl, trying to help me get her this experience.
it was enough to keep me in tears for nearly 24 hours. you don't realize when your in the center of this shit storm that there really are so many people standing on the sidelines just waiting for you to ask for some help. it was shocking. I liken my life to living in the eye of the storm. I have a deep level of personal peace that I draw from to keep me and Sophia on and evenemotional level most of the time.. but things are ALWAYS just raging around us.. and I often cant keep my focus on how much people do care. you get stressed and exhausted and angry, oh you get so so angry... and you get sad and then you reach a new level of exhaustion that you didn't realize you could actually operate on.. then you get sad and frustrated again... honestly that's what my emotions are always doing to me under my carefully constructed smile.. and I don't hardly ever see genuine good in complete strangers. unfortunately having a child who is special needs shows you the ugly in the world.. and its hard to see past sometimes..
but in less the 48 hours we received almost 200 shares of our go fund me page and 950.00 dollars!!!!
it was like someone cracked the back door of my heart open and let the light shine straight through my chest.. I was so happy that I felt like I was radiating light...it just floors you when THAT MANY people show your child love and compassion.. it really made me think twice about why I ever felt like we were isolated.. SO MANY people reaching out to me wanting to help in any way they can. it was amazing. my daughter has never looked even one on them in the eye. never hugged any of them . never even said hello. Yet amazingly, each of them felt inclined to help her get this opportunity.
In Addition to the upsee we raised enough to buy Sophia a Go To seat from the same company. A go to seat in a seating insert that can be used in a shopping cart or attach to any normal chair anywhere you go. It has a five point harness system and I high supportive back so that sophi can have comfortable and proper support all the time.
Another thing I cant do right now with Sophia is take her out by myself. anywhere really.. because she has sensory defensiveness, meaning she doesn't like unfamiliar places and textures
she clams up. gets very tense and uncomfortable. The shopping carts are hard cold loud and do not have any measure of appropriate support for her. I can get her into one on a really good day for maybe 5 min. before she gets upset. so I cant do groceries, go to target, walmart, clothes shopping alone ever because I need someone to hold Sophia for me or be able to cherry pick the items I need and push the cart while I carry or push her. We also don't really go out to eat anymore. because Sophia is getting to big to be held on our lap in the booths which is what we used to do when she got to big to be carried in her carseat.. but now she flails her arms and would clear our table.. but just like the shopping carts most resturaunt high chairs and HUGE and hard and low and have one lap belt .. which is not enough support for Sophia.. So we just order out.. but its just one more thing we cant do like a " normal family" and it sucks ... I hate it..
But with the go to seat I CAN bring her out alone..!!! I don't know why but the fact that I cant go run my errrands without bothering my hubby.. has always urked me... like what kind of a mother cant take her kid to the store or out to eat??!?!! I know its not my fault. but still it leaves me feeling like I am not mom enough. More importantly though it leaves me feeling like I am not doing enough to help her live in our world.. she deserves to be comfortable in public settings.. she shouldn't have to be nervous at stop n shop for god sake... its enough to bring me to tears .. on a very deep maternal level I have felt like a failure since the day we got our first diagnosis.. its just comes and goes like the tides.. flaring up a few times daily. usually in strong connection to the moon... (early morning and late night are the hardest on me)
When you are raised on one income and you have been surviving on one income for most of your life.. you get a strong understanding of the value of a dollar.. so I just want to thank each individual who donated... some as high as 200 dollars and some as small as a ten .. but you know what??!?! that ten dollars means just as much to me as the 200 does.. because I know that is money out of someones pocket, I know that's a meal, a tank of gas or a bill that could have been paid. and yet they choose to GIVE IT AWAY for NO REAL REASON.. words fail even someone who talks as much as I do.. you gusy have done for her what I couldn't.. I don't think I will ever be able to convey how afraid I am of not being able to provide for this child.. it is my driving force in life.. that fear of not being enough.. it consumes me. But knowing and seeing that I have so many genuine souls so many good hearts behind me to whisper "you got this girl" ," tomorrows a new chance" , " your doing a great job", "god bless her " those small words go right to the deep dark spot in my soul that I cant get the light into.. each of you guys punch a small hole in that sadness and that fear.. with each of your comments and each of your helping hands.. I am a little less afraid of not being able to do it all, all the time..
and that is something that money can not buy. and for that I am eternally grateful to you all.
when I was 7 I was in chorus and we sang the song "it takes a whole village to raise a child" .
I don't believe in coincidences. At 7 I loved that song I thought if the world really did the things in this song, it would be a better place to live. Now im not really sure that rule would work out so great in al villages.. hell im lucky to find two people who can raise a kid together these days..
I am lucky enough to be part of a village that harnessed this concept and brought it to fruition.
thank you for not leaving me hanging guys... it would have been epically awful if I put that up and got NO response.. just know what you all have given me is so much deeper then the dollar can go. What you have given Sophia is an amazing chance to feel her world from a first person point of view. I cant wait to be able to introduce her to the world. keep on the look out for videos and updates!!!
I placed the order already and I am waiting to hear when we can expect a delivery !!! woohoo!
No comments:
Post a Comment