Out of the hundreds of wonderful and supportive comments and emails I receive, every once in a while I apparently piss someone off with something I share.  Instead of writing back to this one person, I decided to share my response here in case anyone else felt the same way. 

When I mentioned a few days ago that I raise Hannah differently than I do Abby and Ethan, a mom of 4 kids was “disgusted” with me and felt horrible for Hannah having me as a mom.  She felt that by not planning for Hannah’s future like we do with Ethan and Abigail that I was “giving up” on my child.

I admit I don’t plan for Hannah’s future when it comes to going to school, getting a job, or falling in love and getting married some day.  I don’t even let myself plan for her to go to the elementary school that Abigail and Ethan go to.  I don’t stress about Hannah not hitting the milestones that she should at “that appropriate age and timeline” because it isn’t important to me.   If I start letting myself think about it, I get incredibly angry, depressed, and sad.

Unless we can find a treatment for Hannah’s disease, there is a strong chance she may not make it to elementary school.  If, by the grace of God, she does make it to elementary school, will she be in any physical or mental condition to go to regular elementary school?   We know what the future holds if we can’t find something — tracheotostomy, feeding tubes, seizures, and just a horrible, horrible … I don’t even want to describe it.

Hell, I’m scared to death that she is not going to make it to her second birthday! 

As parents, our role is to love and prepare our children for their lives as adults.  Teaching them responsibility, individuality, community, etc.   With Abby and Ethan, we do this every day and every moment.  We talk about the future — schools, colleges, their careers (right now Ethan wants to be an architech or actor and Abigail wants to be a singer or doctor).  We teach them how to do things on their own, and we try to motivate them to reach for the stars.  There is no limit for them.

Hannah, as of right now, is very limited.  She wasn’t given the gift of a healthy life.  She was given an incredibly cruel, debilitating, painful, and extremely rare disease with not even a treatment.  A disease that threatens to take her away from us when she is just a baby.

So, if she wants to fall asleep cuddled next to me every night and naptime instead of learning to fall asleep by herself in her crib, so be it.  If she wants to not practice solid food eating after 2 minutes of trying, so be it.  If she wants mommy every single minute which may take me away from household chores, so be it.  Hannah gets what Hannah wants, right then, right there. 

We continue with all her therapies because we want her to improve as much as she can before it is taken away.  For most people, therapy is a means to learn skills to adjust to the future.  Therapy, for us, is solely for us to have Hannah learn as much as she can before it can be taken away by the neurodegenerative brain portion of this disease.  The more skills Hannah can learn now in terms of physical, occupational, and speech therapy, the longer it will take to lose them, and the longer we can keep her with us in hopes of finding a treatment.

If Hannah’s condition changes, and God I hope it does, then we will start teaching her to fall asleep by herself, etc.  It will be harder to do at an older age than it would at this age, but heck, I will take on that role in a heartbeat!  I would absolutely deal with cries and tears because she is made she has to sleep alone to fall asleep if that meant she would be able to be here with us for a longer time.

My husband and I both agree that our role as parents for Hannah is to keep her happy and keep her comfortable (and to leave no stone unturned in trying to find a treatment).  That’s it.  We aren’t going to plan for her future, because when the truth stares in our face, it breaks our heart.  We don’t want to plan for THAT future.  Unfortunately, that is the future that this disease brings. 

So yes, we will continue to raise Hannah differently than Abigail and Ethan.  In our hearts, we would love to raise them the same.  Reality isn’t giving us that option.