I took Isaac to participate in the last night of vacation Bible School Friday night – and as I watched him there, I thought about all of the things I have learned from him and because of him. First of all, watching him absorb what was happening around him was amazing….. he LOVED watching the big kids sing and dance and couldn’t believe he was allowed to stand up and dance too! I realized it’s these instances of “normal” activity that teach me the most, and often strike me the most.
So, as I sat there I realized that Isaac really has been responsible for some incredible lessons over his very busy three years here with us. Some are very obvious, others have come after deep thought and reflection.
The list begins……….
Break the rules – If we had followed all of the rules laid out for us by the many experts that take care of Isaac he would not have much fun. He never would have gone “swimming” in a lake (first because of the water that could enter his trach, second because of the sand that could enter his trach!). Isaac wouldn’t have attended school (as many thought the germs there would be his downfall)… he did get sick, but he also got to make friends and play and ride a yellow school bus – totally worth it!
My boys have spent more time in the ICU (and by time, I mean more than one hour) than any child should ever have to (either admitted or just hanging out with a big brother) – and I know they’ll both be much better men for it. Talia has spent an extraordinary amount of time at the Ronald McDonald House, and she too will be a much better person because of it. She does not look twice at a child who has no hair, or tubes coming out of them – this is a life skill most kids don’t learn.
Staying up late is pretty okay – Isaac doesn’t always sleep at night like other kids, typically at least once a week we have a late night party in our house. When Isaac’s 11 pm nurse comes through the door he is awake to greet her. I have learned to cherish these times, this is time that we get one on one with our Isaac. This past Friday night we got up at 10:00 and danced to the Wiggles, IV and all – and we had a blast! We watched this child lay in a hospital bed “sleeping” for many, many monthss – we have come to appreciate all time we have with him when he is awake and showing off that personality.
Repetition of mama is a beautiful thing -Isaac had NO voice from the time he was trached (at 4 months old) until he was 2, after several vocal cord surgeries. He cried silently, he couldn’t yell for help or attention when he needed (or wanted) it, and he couldn’t say mama. For the past year and a half he has explored his voice and his sounds and recently began saying mama. He can say it over and over and over, to the point where I think “enough already” – then I remember his silence. The sound of mama (even if said in rapid succession for what seems like 10 minutes) is beautiful!
Family is more than blood – something I’ve talked about before, our hospital family. We have met families that we never would have taken the time to know, because Isaac put us where we should be to meet them. Our EA family is HUGE, and has grown to include many others. It is important to know someone who lives your life, and to have someone to talk to about things that not too many people understand. In watching some families fight for their children’s lives, we have seen others that don’t fight hard enough. We have seen good and bad – and learned how hard to fight.
We have learned how to fight – and fight, and fight, and fight! We have learned that there is someone out there with an answer, it just may not be in our backyard. We know that doctors are amazing, and the doctors that work with Isaac are more than amazing. We have also learned that we have to push sometimes to keep some of those doctors listening to us. Many of us “medical mamas” could rival most stalkers in our abilities to track down a doctor for an answer.
Essentially all that we have learned can be summed up in a few ways. Always appreciate what you have, we have seen the worst things that can ever happen to a person, and because of that we appreciate what we have and know that in the grand scheme things could always be much worse. When your gut tells you something, listen! Push and fight for your baby, and sometimes doing that means making some people angry and earning a reputation – which is fine, because that means they are at least talking about your baby J
Isaac has taught us much more than this – and he will continue to teach us. We look forward to the lessons and the fun!
On a side note – today Isaac started showing some “sick” signs…… small signs that most people wouldn’t think twice about, but we know can be trouble. We are nailing him with meds from every direction (the schedule is ridiculous!!) – so far no fever or lowered oxygen rates (which bring about instant “how soon can you get to Minnesota?” discussions) – so hopefully we are catching it early. He had a great time hunting for monsters with his new flashlight tonight – another sign that he’s not too sick yet….. please send positive thoughts for no new major sickness.