Monday, January 16, 2012


I have no idea where I am going with this post so just hang with me.

When I look at pictures of when Kayla and Noah were little or even when they were not so little and Mckenna was the little one, it seems like a whole different time.  Like a whole world away.  I was a different person.  Our future was a different picture.  Of course there were struggles, I know it wasn't a 'perfect' or even easy time of life.  Somehow life made sense though, and I guess I felt like I knew what I was doing or at least where I was headed.

Enter Ayden Jane.  First there was the shock of her not being born healthy and sent to MUSC.  As hard as all that was, I think the day I received the phone call that said her test for PWS was positive was even harder.  In that instant, my life changed forever.  This was a long haul issue. I was plunged into a world of genetics and endocrinology.  Neurology and nutrition.  PT, OT and speech.  It is a never ending challenge to push hard, but remember it is a marathon.  I can't sprint through it all.  There are times I just want to enjoy my big kids, but what about Ayden Jane...

It is a little hard for me that when I look at the old pictures from before PWS, I have such awesome memories and a feeling of joy. I guess that is the perfect word for how our house 'felt'.  It was a safe place, a joyful place filled with laughter, hopes and dreams.  Now I feel like I fight to keep things that way between the stresses that come with special needs parenting.  I look at pictures of Ayden Jane and I do see some great moments when she overcame something, but the overall feeling is of .... sadness?  That maybe too strong.  I guess more like struggle.  Oh, and don't forget to add in the worry.

I guess day to day when you are in it, you just keep plugging away and you don't notice the big picture 'feeling' around everything.  Gary has done so much to keep the laughter rolling around here.  I tend to get caught up in the fighting this PWS thing and way preoccupied.  At times it just seems like I raised the older kids in a joyful home with other great families that we had much in common with... We figured the whole parenting thing out together and we knew our mistakes would all wash out in the end.

Don't get me wrong, there are unique joys of raising a special needs child and although I know that I am not the same person, I know that in ways I am a better person.  In some ways I have lost confidence but in others I have managed to do or learn things I never would have dreamed possible.  Hopefully, all things before and after PWS will one day blend into a beautiful collage instead of a seemingly stark comparison.


  1. beautifully said - I have the exact same feelings when I look at pictures of our family prior to Brandon - its very hard to explain to people with out feeling guilty - thank you so much for sharing your thoughts - i felt like I was the only one who felt that way
    mary b

  2. I totally relate to this post. We have a photo of me, my husband and oldest son taken as we left for the hospital to have Oscar. I think of it as the "before" photo. I see joy and anticipation in that photo, and most of all I see innocence. Now that Oscar is 11 I can say that I am not nearly as sad...we are moving toward that "beautiful collage" but I will also say that our house is not as full of joy as I would like. Having a child with a disability is hard, even when things are going relatively well. We manage so much -- educationally, behaviorally, medically ALL THE TIME -- that it is hard not to be preoccupied, distracted, and at times disheartened. But tonight, when Oscar was doing one of his silly walks up and down the hallway talking in a funny voice, making the rest of us giggle, everything got just a bit lighter.

  3. I could have written this exactly. I call April 27, 2009 - the day before Dean was born - was the day that my "normal" life was on its deathbed. And I had no clue. Well, I did, but I didn't. To me, it feels often like a wound from which I'll never fully recover. Not that joy can't be had with it, but that it will always be there.