One less worry

Its an amazing feeling to have even just a little weight off my shoulders.  Enough for me to get a little sleep in between work, appointments and the responsibility of having a special needs child at home.  Since having Jaylyn, the typical mother roles had to be modified.  Instead of chasing a toddling baby around, I support her while she goes through the mechanics of putting 1 foot in front of the other. Screeching with delight and pride as she makes her way from room to room. Although Im the one with the sore back from being hunched over, I am proud too. I will endure a little pain if it will bring Jaylyn joy. Today we had an appointment at Shriners Hospital's CP clinic.  It wasn't as intensive as the one at CHOP but the end result is the same. My baby is getting orthotics to assist her in "walking". Due to the high deductible for durable medical equipment and out of pocket expense for 2 little pieces of plastic and some velcro, we were scrambling for ideas as to how we could afford them. Thats when we heard about Shriners. The burden and worry has been lifted. Any future orthopedic care will be followed by Shriners.  If Jaylyn needs a gait trainer, walker or wheelchair they will help. I am continuing to fight the good fight. Petitioning,  reaching out to the media, and appealing unjust decisions. This alone has consumed a lot of my time. It's draining,  stressful,  and a lonely road. A lot of it seems to fall on deaf ears, ignorant minds, and uncaring hearts. Yet I refuse to be discouraged.  Someone has to care! Over 100 people cared enough to sign our petition.  It was disappointing that more "friends" and "family" didnt care enough to bother but we couldnt be more grateful for those that did. And that is what we are trying to focus on. The positives,  the good things and the little blessings scattered along a very bumpy road. We are facing the biggest bump in the road yet. Daddy will be getting major surgery.  He has put his own health issues on hold long enough and unfortunately this is necessary.  Thankfully we collectively have our own resourceful support team. Our children.  Noone is going to come and save us so we are  saving ourselves. Of course thinking over the details,  waves of anxiety tend to wash over us but this is nothing we haven't gotten through before. I have faith that all will work out.