This Gets Easier---Or Does It?

When Noah was first diagnosed with CCHS I spoke with several CCHS parents and they all told me one thing--it gets easier.  I really doubted them but now I understand why they told me that. 

Noah's first year was filled with appointments.  Twice a week I loaded him and his equipment (no nurse available to help) by myself and went to his therapy at the hospital.  In addition to this, I also had to take him to all of the normal first year well check ups.  We also had to coordinate his speech therapist, occupational therapist and his physical therapist to come twice a month to our house for home visits.  Looking back, I wonder how I did all that alone.  It was definitely not easy. 

Travelling was also an issue.  We could not go anywhere without the vent.  As an infant, he would fall asleep at any time so we had to make sure his vent was with us, even if it was just a short trip to the store.  Definitely not easy. 

I can see now, that the older he gets the easier it can be.  We no longer pack the vent up to go places around town.  He no longer has the home therapies and we do not frequent the hospital as often.  In this respect, it has gotten easier.  But, now we are facing other issues. 

School is a big issue.   Do we keep him in private preschool where I will have to go with him everyday or put him in public where there is a chance that they have no idea how to care for him in an emergency.  I realize that these school nurses are suppose to know what to do but it's hard for me to believe that they can care for him when his condition is so rare.  Even the nurses at Children's Hospital have never heard of CCHS.  They refer to me and ask a lot of questions. So how can a school nurse really know what to do? Plus, the children in his pre K class accept him.   There is no bullying or making fun of him.  I'm sure at some point in the future this will not be the case.  He is going to have to deal with being "different" and I can only hope that he has surrounded himself with good friends and not care what anyone else thinks.   In this respect, I think its harder.   

I know that there are going to be many more issues that arise as he ages.  At some point, he will want to be self sufficient.  How can he do that if he doesn't even hear the alarms going off when he's asleep?  What happens if he's driving and is in an accident where he is knocked out?  What about college?  He's not going to want his mommy there to hook him up every night.

All of these (plus some I probably haven't even thought of) makes me think that it's not necessarily easier as he grows.  I think it gets harder.  I suppose we just take it one day at a time and figure it out as we go along.