Well it is now Feb 1. 2013 and so far 2013 has been a great year. Jordan got through the first month with a flu but no major health issues. He saw the neurologist and his meds have been increased again to try and stay on top of the status epilepticus seizures. Fingers crossed it works. Jordan was happier today than I have seen him in a very long time, full of smiles and laughs. It really makes our whole house smile and brightens the mood when Jordan has a great day. School said he was wonderful today as well.
Travis has his cardiologist apt coming up in soon and fingers crossed after our little scare with him last fall everything is still fine and we can hold off on his pulmonary valve surgery for a while longer. Puberty can wreak havoc on their growing bodies.
I am so appreciative of all of the support we have been receiving from our friends, family and the community for Jordan's Journey Benefit. It is heart warming to know our little Jordan has caused this much of a stir. I have always had faith in humanity and what we can do as a community and society if we stick together and this is proving me right.
A quick serious note about the benefit: This was NOT an easy decision for Jay and I to accept help. It was not something that we thought lightly about. As a matter of fact it took some coaxing from family and several friends to talk us into doing this. Call it pride, embarrassment or whatever you will but Jay and I were not on board with this. We did not want anyone to think we were reaching our hand out nor did we want to admit defeat, that we couldn't do it all alone anymore. I have thought about this long and hard and we are not defeated, we ARE proud and we have nothing to be embarrassed about. We are the parents to one of the most special boys in the world (1 in 5 Million to be exact) he still at 13yrs old doesn't have a full diagnosis and might never have one and we have been champions in his life for 13yrs and will continue to be for as long as he lives. I am Jordan's Mom, I am so proud of every moment I get to share with him, Jay and I have done everything we can do to stay afloat on our own and give Jordan and his siblings everything they need and we DO need help. It would cost so much more to place Jordan in a home or long term care facility and have strangers watch over him and care for him than it will for his MOM to care for him and this is where he belongs. He is part of our family and he will remain part of our family even if that means we have to ask for help via fundraising to pay for equipment and renovations so we can care for him long term. I don't know a single parent that wouldn't feel the same way. We are not going to feel ashamed, embarrassed or defeated anymore. We are going to stand proud as a family and do whatever we need to do and I thank each and every person that has been helping us and supporting us. We SERIOUSLY couldn't do it without you!! Love you all and lets have a wonderful 2013.
No comments:
Post a Comment