Balancing Family Life after a Diagnosis

My new Houston Examiner.com Special Needs Article…
Please take a moment to click on the link above to read the entry there.  The more page views I have, the more chance I have of becoming featured on their main pages!  But since this is Hannah’s story, I want the article here too.

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Even though Hannah is only 6 months old, I feel that the life that I knew before we knew she was ill has been gone for a much longer time.  Things that I enjoyed before Hannah was here (such as certain television shows, projects, etc.), I find very little interest in these days.  I would rather spend that time with different activities, mostly ones relating to creating awareness and finding a treatment for my daughter’s disease before it takes her away from us in a few years.

I have made a very conscious effort towards making sure our family life is as normal as it can be for our kids.  They know Hannah is sick.  They know she has a lot of doctor’s appointments.  They know that she gets her “medicine” (Cerezyme enzyme replacement therapy) every other week down at Texas Children’s Hospital.  But they don’t know the extent of her illness and what Hannah’s prognosis is.  To our kids, Hannah is just the baby sister who loves laughing when they make funny faces and loves to sit on their laps.

I have this rule that I do not do “Hannah stuff” when our two older kids are home.  It would be so incredibly easy to become completely obsessed with my new advocacy mission and work on it every waking moment if I could because there is still so much that I want to do. 

Yesterday afternoon before my husband got home from work, the three kids and I were downstairs playing Wii Disney Sing-It Karaoke for almost two hours.  Hannah sat on my lap and watched as her brother and sister were playing the role of a rock star with the hip-hop moves and everything.  I even sang a couple of songs! 

It was all smiles during that time.  No thoughts of a little girl with a fatal disease.  No thoughts of a boy with ADHD.  No thoughts of money struggles.  Just fun, pure family fun.   After it was over, I realized how important these moments are for us.  These are the memories that I want my kids to have.  Heck, these are the memories that I want to remember! 

I need reminders like these more often.  I will not give up on working to save my daughter’s life, but I will also not give up on the fun family times that were the reasons that my husband and I worked so hard to create a family in the first place.   It is a balancing act that I am not yet experienced in, but in time, I know we will find the right balance.