At the top of my blog you can see the following statement that I wrote when I first started this blog:
This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.
Things have changed a bit since then.
I'm still mostly a SAHM, but I do substitute occasionally at the school where I used to teach now that Noah's in full day kindergarten. It's nice to get out of the house, although it is sometimes weird to me that everyone else's normal, seeimingly stress-free lives continued while I was at home drowning.
Noah's still got that dual sensory impairment, but he's learning to use his remaining hearing and vision to his advantage. He still strongly prefers auditory and touch input to visual, but he does use his vision as well.
The preemie thing will never go away, and it haunts my dreams. I can't bear to deal with my friends with newborns, but warm up by the time the babies are a 2 months old or so (which, coincidentally is the adjusted age that Noah was when he came home from the NICU). I'm afraid to have another baby, and sometimes I think I'm more afraid to have a full term baby and hate it then I am to have another preemie and deal with all the drama and stress that it brings.
Life is still frustrating and often heartbreaking, but not so isolating anymore. I have managed to build a wonderful support network full of moms who understand what my life is like. Many of them only know part of my story, having either a deaf child, or a blind child, or a preemie, but I think having a child with any type of struggle makes you more open to other families with less-than-perfect children.
The one thing that hasn't changed at all is that it's still so worth it. For all the stress and drama and heartbreak, I can't imagine not having my sweet, smart, charming little boy in my life.
4 comments:
Sometimes I wonder what it would be like to stay at home with no therapy visits, no medical appointments, and no chronic worry.
Your dedication and hard work really show with Noah- he's bright and an amazingly nice kid. It isn't all roses and sunshine, but I am so glad we got to meet him (and you guys)!
It is fantastic that you have found a group of moms who understand your life. I only have that online. I, too, have a hard time imagining having a second child, healthy or not. I'm so relieved when my friends and family members have healthy full-term newborns, but I wonder at their lives with great curiosity. No months of living at the hospital, surgeries, medications, therapies or devices? No multiple resuscitation or dialing 911? What a leisurely life I imagine most mothers have!! My life is all of the words you used to describe yours, but I wouldn't change a thing. X is my greatest teacher and the love of my life!
Thanks for sharing.
I came across your blog, it's nicely written! Feel free to check mine out if you want. Maybe we can follow one another? :)
http://share4files.blogspot.com/
My daughter is a 24 week preemie and has visual impairment. Reading your words describes how I felt and touched my heart deeply: thank you so much! You give me hope...
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