Tuesday, August 31, 2010
Finding A Way....
Somehow... Someway.... I have to achieve BALANCE... Balance seems to be the unachievable goal!! But somehow... someway... I, so desperately need to accept life... Devin went for numerous evaluations this summer and the one consistent bit of information I was given time and time again was... "Devin is a very sick little boy".... "he does NOT and will NOT have the strength and the stamina of other children his age".... I have tried so hard to make him NORMAL... normal he is NOT!!! What is normal about his life?? What is normal about dealing with illness every day... all day??
We are starting on a new foot this school year.... The goals that "I" set for Devin... The goals "I" so desperately wanted him to meet... are unachievable at this point... I have wasted precious days that I can NEVER get back... searching... and searching.... and searching... for someone to tell me something was wrong... or for someone to give me a quick fix for his struggles... Instead of taking a step back and looking at the big picture...
My ultimate goal for Devin is QUALITY of life... NOBODY!! can possibly understand the magnitude, complexity, & severity of Devin's illness... Their is a fine line between health and extreme sickness... How well his transplanted bowel is functioning ultimately controls how well he is doing...
We have come to accept that with everything he has on his plate... school will have to come second..
We are starting on a new foot this school year.... The goals that "I" set for Devin... The goals "I" so desperately wanted him to meet... are unachievable at this point... I have wasted precious days that I can NEVER get back... searching... and searching.... and searching... for someone to tell me something was wrong... or for someone to give me a quick fix for his struggles... Instead of taking a step back and looking at the big picture...
My ultimate goal for Devin is QUALITY of life... NOBODY!! can possibly understand the magnitude, complexity, & severity of Devin's illness... Their is a fine line between health and extreme sickness... How well his transplanted bowel is functioning ultimately controls how well he is doing...
We have come to accept that with everything he has on his plate... school will have to come second..
- if he is not healthy... he can not learn
- if he is not absorbing his food and meds well, his blood sugar will be all over the place... this is not ideal for learning
- if he misses weeks of school do to hospitalization... he will struggle
- if he doesn't physically have the strength or the stamina to keep up... their is nothing we can do to change that
So, somehow... someway... I MUST ACCEPT... and deal with the challenges as they come... We are NOT having an easy time with the anti-rejection drugs these day... their is ALOT of uncertainty that lies ahead... All I can ask is for continued prayers!! & support...
Devin is doing his Make-A-Wish... Tuesday.. as many of you know he so desperately wants to meet the Yankees. I hope and pray for his sake that he "physically & emotionally" is having a GREAT day... and I hope that somewhere in their hearts they embrace him and make it a dream come true... I have not heard warm and fuzzy things about the Yankee organization... PLEASE don't let it be true!!
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5 comments:
I have been following you guys for some time now and all I can say is WOW!!! You are such an amazing mom and you have cared for your little boy better than anyone ever could! I have spent nights reading your post from the begining and words just can not express how much I admire you. I feel your struggles and fustrations. I can only imagine what you go through on a daily basis. But the love you have shines through and as I read I can feel the love you have for Devin.
I have a "special child" and some times people ask how we do it?? It is simple, you wake up, you do what needs to be done, then you go to bed just to wake up the next day and do it again. It is called LOVE, and when you have love for someone you do what ever it takes. I will continue to pray for Devin's health and for continued strength for your family.
It's been a while since I checked in with you guys. My Zachary is keeping me very busy but that is a good thing. I run across the same problem of everyone thinking that all is "ok" since Zach has had a stretch of "good" health. All we can do is try to enjoy every moment and pray, pray, pray. Keeping you guys in my prayers! Take care,
Carmelita
Hey Colleen,
I sense a feeling of being overwhelmed. You are allowed to feel that way (if you are). Joe is 8 years post transplant but still has lots of special needs. Life is not easy but the overwhelmed feeling is not nearly as prevelent as it was in the past. You are doing great and giving Devon a very special life. All my best,
Rich (Joes dad, we met before Devon's transplant at a WRTC event).
Colleen, I don't know anyone that has given more of themselves to helping and caring for children as you. You have loved and cared for many of our children. Personally, you helped save my child's life and kept me from loosing my mind 7 years ago when you cared for my son, Trevor. I wish that I could provide Devin with as much love and compassion. You're an Angel. Observing you has taught me and I am certain many other some of life's greatest lesson. I pray for you and your son Devin. I hope that someday life will get just a little easier for you, Devin and the rest of your family.
Kevin Hughes
I couldn't agree with you more!!! Although I know that doesn't change the difficult days you still find yourself in. "Quality" is absolutely the key here!! Will be praying however for balance.
And also for Tues. HOW exciting!!!!
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