These last few weeks have been beyond hectic to say the least. When Sam gets sick it causes a huge snowball effect of other things getting knocked out of place. For example, appointments get cancelled, therapies go on hold, more appointments get added, etc... When we go to different doctors especially when he is sick red flags go off for them and they begin to think "what else" is going on with this child. So then of course this leads to more appointments and more testing and more and more and more and more...
So last Sunday both of our PTs called and invited myself and Sam to attend a CME conference http://www.cuevasmedek.com/ . They wanted "The" CME guy Ramon Cuevas to use Sam at the conference to present examples. This is really an amazing opportunity and one that hundreds of families wish they could do for their children. He is some what of a miracle worker when it comes to helping developmentally delayed children acquire gross motor skills. After those few hours Sam came home and sat up for 20 minutes completely unassisted!!! Now Ramon will be treating children independently after the conference is over but the waiting list is insane. We are borderline on whether Sam will be seen by him or not and we will have no idea until late next week. So my anxiety level is through the roof because if I can't get Sam to see him I feel like I have failed my son. This man has gotten children with half their brain missing to walk. And trust me money is no object with us, but that is not how this gentleman works. So in the mean time I am going to take what I can get in terms of letting who ever use Sam at the conference. But there is always a penalty... First of all there are other children there too and where there are children there are germs. Sam is just getting over a pneumonia. Every time Sam gets a lung infection it develops scar tissue once the lungs develop enough scar tissue you go into organ failure then there will be no more Sam. So they invited Sam to come back yesterday morning. Sam was one of the only children there for the first part of the morning. But as the morning progressed more children came and Sam started to become really agitated. I took this as a sign to get out of there especially since some of the kids were coughing. But after I left I couldn't help but to feel like Sam missed something. Of course Sam's health is the most important but it is really terrible that I have to make these kinds of decisions.
In the mean time Sam is scheduled for a bronchoscopy, a neurology appointment, feeding clinic, pulmonology, and I have health appointments for myself as well. In addition Sam has a very important annual meeting coming up to keep and increase services and get additional equipment. I know I am going to have to fight at this one because this state is starting to hold back money for early intervention. So if we do get in to see Ramon it will be for six sessions over a six day period. Which means cancelling and rescheduling. But I am stuck in limbo right now because I don't know when and if I have these appointments. And if I don't play everything right Sam looses.
It kills me to have to put Sam through all of this chaos to just make sure he has a chance to walk, eat, talk, live... Scott and I have to fight for every little aspect of Sam's health and development. I am so tired of everything we have to do every day. People talk about how strong I am I'm really not. I am just like everyone else. The only difference is I got dealt a really shitty hand. So how does that make me strong??? Would anyone else not do the same things that we do. Maybe most people would not know exactly what to do but you all would know how to get the help you need. You could always ask me, right? Then you would do what needs to be done. But does this all really make me strong??? I don't think I am that strong. If I were strong then I would take Sam to other kids parties or to the play ground. Other families that have children with special needs are much stronger then I am. They don't let any negativity stop them. They take their kids on the subway, go to public places, go to parties, travel long distances, etc... Sam is strong, not me. We can all learn from Sam, not me.
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4 comments:
In the wake of the negative responses from some of the so called specialists, I see a very strong mother who refuses to give up.
Yes there would be some of us that would give up or at least let ourselves be discouraged by the different opinions of Sam's progress by his doctors.
You have been focused on the fact that there have been improvments in Sam, and you go on and continue to get him every kind of help available.
You are also there to help other parents with their questions and needs.
Don't tell me that you are not strong.
You are amazingly strong for all of us.
love you very much.
MOM
You are mistaking strength for humanity! You are an amazing mom and that is all that matters. I have told you for years (EVEN pre-Sam) that everything happens for a reason, so of these things can even seem sick and demented and we are not to question God but fight for peace sanity and even services. So do not knock yourself or compare yourself to anyone, ever! It is unfortunate that you are dealing with all of these obstacles but you can and will make the right choices whether or not you know it at the time.
I love you Scott and Sam, and know you will all end up in exactly the place you are meant to be
Hugs and kisses
Alise
Carrie, you know darn well you and us moms are strong. I have seen it first hand, kids like ours are left to rot or are sent away. Just to look at the adoption websites and state schools. People CAN'T handle our kids and God gave them to us; it sucks, it really sucks to have to endure this b/c somebody else is too much of a wimp, but what can we do? You know, when i was pregnant, I prayed to God that he would send me a child that would otherwise have been abused, then I got GIuli. Coincidence? I don't think so. Also, Carrie, you are not failing Sam, not by a mere spec. If you get in to see that guy, wonderful, but Sam's future doesn't depend on that guy, he may just teach Sam to do it sooner, but if Sam has it in him to inherently achieve that goal...he will!! And I believe in my heart of hearts that Sam will walk!! He is already doing SOOO much! Celebrate those things girlie, I know Sam will do great and 90%is thanks to your love, dedication, and sacrifice...i think almost all moms can't even compare to that. I admire you.
Vanessa
Everyone else would not do the same thing. You have abilities and brains that other people do not. You have such motivation and persistence that most people do not. You just don't see it. You do much more than most other people would do -or could do- in the same situation.
Love, Nicole S.
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