This month, write a post to share something that you wish other people understood about your life with a child or children facing medical challenges.
(For carnival rules and information click here.)
Like those dark circles? Five years later and I’ve still got ‘em! 
You know, it’s a funny thing… I selected this topic thinking it would be an easy one to write about. But here I sit, late Wednesday evening, trying to sort out five years worth of thoughts on this subject. And it is not easy. Not at all. I am so grateful for a family and close friends who do understand, but so much of the world doesn’t, and probably never will. So what is it that I wish others understood about raising a child with medical challenges? So very many things. And some of them are so difficult to put into words…
I wish that others understood the difference between empathy and pity. That others understood how to make accommodations for medical needs without looking at my child as something less than she is. That they wouldn’t see only her challenges, but also the brilliance and strength she possesses in overcoming those challenges.
I wish that others were more tolerant, more accepting of differences. That society’s definition of ‘perfect’ referred to worthy attributes of the heart and not to the way someone looks, or moves, or communicates.
I wish that others knew and understood the power of a casual remark or question on the heart of a child.
I wish that more doctors would understand and be respectful of the knowledge my husband and I hold specific to our child.
I wish that others understood the level of time and energy it takes to parent a child with medical challenges through a twenty four hour period. That others could have some concept about how our day revolves around working with, through, and in spite of those challenges. That when I inevitably fall short of perfect in my correspondence, that it is because at the end of the day I have emptied all that I am and all that I have into my family and not because I have set out to slight anyone.
I wish that others were more frequently interested in more than just the ’sound bite’ or ‘happy ending’ version of things. That eyes wouldn’t glaze over on those rare occasions where one of us risks giving a heartfelt answer to the question, “So, how are you all doing?”
Early on, I wish that others had understood that while we were delighted to have a new baby in our family, that our lives were radically different than other families with new babies. That along with the joy, we were also grieving — that we needed some time and space to grieve. I wish that others had realized that in those early months, our apparent withdrawal stemmed primarily from exhaustion and profound grief. Grief that we were not able to fully process while a rapid-fire succession of critical medical decisions were constantly pelting us near senseless. Grief that we are processing still.
I wish that others understood that while our lives are filled with joy, that some level of grief will always be there for us. And I wish that others were as okay with that concept as we are. The joy makes every ounce of grief — past, present, and future worth it. The tears make the laughter even more precious.
I wish that others understood that our family is more because of Jacqui and every precious challenge that she brought with her, that we wouldn’t trade a minute of our time with her for a whole lifetime of someone else’s definition of perfect.
What About You? Tell Me What You Wish Others Understood…
parenting children lymphatic malformation tracheostomy G-tube sclerotherapy motherhood Finding Courage Through Sharing Blog Carnival Finding Courage Through Sharing NICU medically fragile blog carnival
Wow, I’m first to comment, what an honor!
First, I would like to agree and 2nd everything you posted, I also would like to add– Just because the child looks “normal” please don’t assume they are. If you can’t say anything nice, SHUT UP! (sorry, I don’t really enjoy that phrase, but sometimes people in the public need a mute or edit button!)
I also really want to echo the part about — not trading what we have for anything else… These kids are blessings to us no matter their medical issues, we choose to see things in a positive light–if you can’t be positive, then be gracious and quiet!
Thanks! for letting me vent a little!
We know that “There is surely a future hope for you,and your hope will not be cut off. Proverbs 23:18
May 22nd, 2008 at 3:54 pm
WOW…I would like to 3rd everything you posted! Great GREAT post!
May 22nd, 2008 at 4:21 pm
Thanks for sharing your dark circles. Mine get worse every year and the funny thing is I never connected it to stress…just thought it was age…maybe it’s a little of both in my case. Anyway, now that I think about it I guess they are a badge of honor if they are a result of my unusually blessed life with my special child. BTW – you look beautiful, circles and all.
I really appreciated Stacey’s comment, too…my girl’s handicaps are not physically apparent and people’s passing comments can be crushing to us as parents; thankfully, at least she doesn’t understand them. Sometimes I’ve envied the parents whose kids are in a wheelchair because at least people know they have a handicap and don’t just assume the kid is spoiled or mean.
My post is coming; still working on it. Thanks again for hosting!
May 22nd, 2008 at 4:23 pm
Wow that topic is a pulling out of a silent well. Drawn into the refreshing cool drink of fellowship. Thanks for the prompt. I’m all worked up now.
I so appreciate what your heart has shared.
May 22nd, 2008 at 5:28 pm
Wow, this is powerful. I am grateful to you for sharing so much, so those of us not raising a child with speical needs can have a little more understanding.
May 22nd, 2008 at 6:50 pm
Wow, Can I just echo everything that has been said? That was an amazing post and basically echoes what I feel on a day to day basis.
The thing that really gets to me is people saying, oh, but she looks so well, when they really have no idea. It is their way of saying, I’ don’t want to know.
That really gets to me, every single time, it’s like fobbing off my worry.
May 22nd, 2008 at 10:37 pm
I read your post earlier this morning, but decided to wait until my post was finished before commenting. I totally forgot that today was the day for this post until I logged onto my reader and seen it.
Your post is AWESOME as always!
May 23rd, 2008 at 2:46 am
I left you a award at my blog.
May 23rd, 2008 at 11:41 pm
Eloquent and full of the perfect description, Michelle.
I added my post to Mr. Linky.
May 24th, 2008 at 1:34 am
So glad you all showed up!
I hope everyone has been enjoying getting to know each other a little better — you all had just beautiful posts this week. What a fabulous group of moms you all are!
~Michelle
May 24th, 2008 at 3:52 am
I loved reading this. Thank you.
May 25th, 2008 at 5:41 am
Excellent. Perfect. Astonishing. And this:
That when I inevitably fall short of perfect in my correspondence, that it is because at the end of the day I have emptied all that I am and all that I have into my family and not because I have set out to slight anyone.
I wish that others were more frequently interested in more than just the ’sound bite’ or ‘happy ending’ version of things. That eyes wouldn’t glaze over on those rare occasions where one of us risks giving a heartfelt answer to the question, “So, how are you all doing?”
reached right down inside me and shook me about. You have the power to change people with your beautiful writing, Michelle, make them see and understand.
Big hugs,
J
May 25th, 2008 at 9:16 pm
Yay, Ursula!!
Good to see you here again, and fabulous post!
HennHouse - I’m so very glad you joined in and I’m just in love with your beautiful family
Can’t wait to start getting to know your place better and hope we see lots of you around here!
May 27th, 2008 at 11:45 pm
Yeah, the glazed eyes. UGG. Thanks for another good go-round sweetie. You rock. With you every step of the way!
May 31st, 2008 at 5:13 pm
Hey Leejo! Glad you made it — I just came out of my fog enough to notice your link today — fabulous post, you!
June 9th, 2008 at 2:42 am
You know, I won’t even begin to try to say that I understand even a half of what you’ve been through. What few medical issues my children have had were fleeting, and I have been so blessed not to have had to endure any of what you’ve gone through. Now having said that, you know I think Jacqui’s just gorgeous, and a big heart to boot! Aside from that, I just want you to know that during this past week, I thought of you often (probably every time my little one got sick, not to mention every time I felt like crying because she was getting sick.) And you want to know what I thought? I thought, how does she do it?!? Here I am feeling sorry for myself that the baby has the flu, and I’m lacking sleep for the first time in 2 years. What a whiner I am. Thoughts of what you go through inspired me to quit whining, and to be able to cherish the thought that this will pass soon, and that it wasn’t likely I would have to deal with it again in the near future (that is unless one of the other kids gets it, but they’re older, so it’s not the same.) Anyway, I just want you to know that you are an inspiration to someone, and I would guess that you are to many people besides me. Sorry I haven’t been by lately to tell you so, and to encourage you through what you’ve been going through. I hope and pray that everyone is better now. (Baby in our family had her first vomit free day today, so we’re getting there, Hallelujah!) Be blessed, my friend!
June 9th, 2008 at 4:18 am