Difficult Transitions

I wish someone had given me a heads-up as to what parenting a special needs child with a life-limiting disease is really like.  I wish someone would have told me about how consuming this type of lifestyle becomes.  I wish someone would have shared that tears (happy and sad), fear and hope, and chaos would become just a normal part of daily life.   I wish someone would have warned me that paranoia becomes as commonplace in daily life as breathing air.

For so many months, we didn’t think she would make it through her first year.  All the signs were pointing in this direction.   She presented with symptoms at birth, which is pretty rare even in a rare disease.  Almost everything I have read in the literature says that a child who presents within the first few months life rarely sees their first birthday.  Sadly, I have met families who have faced this horrible reality with this disease. 

But she is still here.  Thank god.  But why is she different?   She turns 14 months old tomorrow, and she is still here.  She is still smiling, still laughing, and still breathing on her own.   She is still growing, still developing, and still enjoying her life. 

I find myself changing my thoughts these days from not thinking about Hannah’s tomorrows to trying to prepare her for life.  All the multiple therapies each week, doctor’s appointments, procedures.  I do it because she is still here, and she is still fighting.   I do it because the specialists just have no idea what her prognosis is, which I interpret as, she is doing better than they expected her to be.

This transition in my parenting of Hannah is becoming much harder than I realized.  Trying to go from from the daily thoughts of losing my daughter every day to figuring out how to keep fighting for her and with her…it takes so much out of me emotionally.  She is so incredibly attached to me, and now I am trying to teach her some independence away from me…it hasn’t happened yet, but I know it needs to be done.

I’m finding it hard for me to realize her limitations and learning to adjust to this realization.  I see her doing so well in physical therapy, and I’m so excited that it is a real possibility that she will be walking by the time she is two years old.  But then I see how she really can’t crawl stil, no more than a few feet, and how she can’t get from a lying to sitting position on her own.  I also see the lack of development in her cognitive and adaptive behavior scores, especially in the past two months.  

My baby’s brain is diseased, a neurodegenerative brain disease.   It isn’t going to get any better tomorrow than it is today.  Sucks.

When I was given such a short prognosis for Hannah, I didn’t even worry myself about her delays, as they were not important.   Now I find myself getting depressed as I see other children Hannah’s age doing things that she is not even close to doing.  Hearing the innocent comments from strangers who see me with Hannah say things like “Oh, she must be running all over the place,” or “Is she chatting up a storm now?” just feel like daggers in my heart, yet I put on a smile face and just say “We are working on it” or “She is getting there.”  I don’t feel the need to tell the whole story to strangers.

It isn’t just her developmental delays that are so tough to deal with, it is also knowing in the back of my mind that everything could change some day soon.  Without a treatment, this disease will win.  It may not be tomorrow or next month or even next year, but there will be a point that this disease will win and take her away from me.   Without a treatment, this is just a fact.  Just even saying it here is killing me.  There very well will be the day when the other symptoms of this disease — seizures, swallowing difficulties, breathing difficulties, etc., will make their appearance known. 

I believe in my heart that if I was just dealing with her special needs that I would be able to adjust to all of this better.  But now, after writing it all out, I know that this “unknown” is what is tearing me up inside.  I don’t know what is going to happen or when it is going to happen.   Living with this hanging over my head is killing me.  

Do we have a year or two or even more than that?

It is past 1 am.  I should get some sleep.  Another big day tomorrow, 3 appointments for Hannah.  I don’t mind, I love her.