Saturday, November 30, 2013
I was reading another parents blog about SMA. So many things he said hold true, things I don't even think about often anymore but still hold true and are part of our daily lives. IT TAKES AWAY!
Over the years we have watched VRK1 TAKE AWAY from Ian, even before we knew what IT was...we have watched IT TAKE AWAY. I have watched IT TAKE AWAY from Becca, Brian and I as well as family members and those close to us. You try not to let it take, you put your foot down, yell at it, put up your best effort. Sometimes you realize it is happening other times you don't. When you have a baby you know, you will bathe it, change it, feed it, get up with it in the middle of the night...as the child grows they will do all of that for themselves. We watched Ian start to do all of that and then...IT TAKES AWAY. The trust that he has to put back in you as you begin to do it all for him again and will continue to do as IT TAKES AWAY.
It is isolating for all of us, regardless of how hard you try for it not to be. Out and about, you are still on, that trust is even more evident when we are not in his usual environment. As parents, Brian and I can't "hang" out with others the way others do. We can't leave our children with the other children to play, to do what it is they do. We do what we do...taking care of Ian as IT TAKES AWAY.
Treasure yesterday, dream of tomorrow but live for today.
Monday, November 25, 2013
Thanksful for so many things it is hard to know where to start. While we have good and bad days, some really good and some really bad, we could not get through them without everyone in our village. Regardless of what role you play in our village, we are thankful for you.
I am thankful for every day we get to have as a family of 4, for all the laughs, all the memories, all the fights, for all the frustrated moments; because we have them together. I may not be so grateful for some of those times while we are in the moment but I have learned to look back on them and be grateful for them.
Part of Hanukkah, deals with the miricale of the oil lasting 8 days when it shouldn't have...our miricales are Becca and Ian and everyday we get with them.
Friday, November 22, 2013
We have been home since Wednesday late morning and all is going well. We are adjusting to all 4 of us sleeping under the same roof and getting to spend time together, it is great.
We are looking to start Ian on home and hospital, the paperwork has been filled out, now we wait for an IEP meeting and then go from there. As usual, the school system does not make it easy...
Have a great weekend from our tinysuperheroes.
Tuesday, November 19, 2013
When you bring your baby home from the hospital, you think it will be the only time... then things happen and you are on your 7th time bringing your baby home from the hospital... today is the 7th time in 10 years we get to bring Ian home. It special each time. Today as we were loading every thing into the van, I looked over and Ian was kissing the air, taking it all in. Welcome home again baby boy, we love you.
Rounds this morning were good. It was decided Ian would be discharge in the morning. So all good things must come to an end... the IV blew this evening... I guess it agreed that it was time for him to come home. The treatment plan is still up in the air as the on call pulmonary M.D. was waiting to talk to Ian's main pulmonary doctor. So tomorrow morning after taking Becca to school, it is to Hopkins I go to bring the boys home. Tomorrow night we all get to sleep under the same roof.