There are times where the reality of our life smacks us in the face...it's not so much the day to day living, that is something we are and have been working hard at getting used to. After every medical crisis we slowly adjust to our new normal and we move forward. That is our job..what Kyle deserves. The hardest part of living with a child who has a chronic condition is trying to fit in, to somehow not completly lose ourselves in the process of making life as safe and comfortable as possible for our son.
That is something I have struggled with for a very long time. The disconnect that comes with the ache of watching Kyle fight for years. I look at that picture that's over there and I sometimes yern for that girl....oh I was truely that annoying girl. Happy....oh, so happy. I had everything I had ever wanted. I had a great job, a husband who would do anything for me, wonderful friends, a great family...ohhh my life was so good.
There are days where I don't know where I fit in...Kyle doesn't have a defined disease, there are not alot of people out there who have lived in extreme fear for 5 years. Some days I feel like we are no further along in this process than we were 5 years ago when we watched him fight for his life in the NICU. I cant' wrap my brain around any of this....I know I need to stop trying to understand this and just live in this moment, why that seems so hard right now I'm not sure.
We are scheduled to get a new game plan tomorrow for Kyle...we seem to be no closer to getting off the TPN, it's now time to accept that and figure out a new plan for him.
xox
K
3 comments:
Kate,
Ooooh do I hear you on fitting in... and who are those people in those pictures from so many years ago? I surely don't recognize myself and I often wonder, would they recognize us?
I will be thinking about you guys tomorrow as hopefully plans are put in place that lead to good places.
Much love,
Lauren
i hope things turn for better in coming days..
best wishes and prayers from my side..
I hear your pain about fitting in. Please consider calling the Oley Foundation. I would be very happy to connect you to other families who live with chronic illness. It is a vibrant community with much support to offer, where you can feel "normal."
As some members have described it:
Meeting everyone and shedding the feeling of being isolated was well worth the trip to the conference. Oley is an invaluable resource.
—Longoria Family
Parents of a HomePEN Consumer
It always does our heart good to connect with other friends who live similar paths.
—LeeAnne B.
Parent of a HomePEN consumer
It meant so much to be able to connect to other HPEN consumers. For those few days I really felt "normal", whatever normal really is! My "normal" seems to change day to day, and sometimes even minute to minute!
—Melissa
HPEN Consumer
All of our services are FREE of charge.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
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