Monday, January 19, 2015

Not Forgotten

It often feels like a forgotten place, parenting a child like Jack. That is why I blog, why I have the social media pages, why I tell you parts of our story.

And then we somehow find each other, but it's mostly through the heartache of broken dreams and the anxious nights bent over hospital beds watching monitors, willing our babies to take just one more breath. We find each other because we have to. The support and encouragement from one another is sometimes all we have.

Last week I posted a link to an article and it prompted a few angry comments. Those comments were deleted. Sometimes when you read a new idea, you may be defensive at first or challenged in some way. I was touched by the spirit of the article, being Jack's mom. It spoke to an important theme to me as of late. About the innate worth of human beings, based not on health or ability, but because of the very fact they are human.

Since I'm not interested in debating (because this is our story and not the right forum for debate), negative comments get deleted. I always scratch my head, though, when someone takes so much time and care into writing about how us special needs parents are too sensitive, too this, or too that. I hear often that we need a thicker skin. And more so, that we should just imagine how we would react if our child did not have special needs... because people shouldn't have to walk on egg shells around us.

I just want to shout it from the rooftops - I don't write or share here for you, the person whose life has not been touched by prematurity, medical trauma or special needs. That is why you may not get many of the thoughts or feelings we have as special needs parents. I am certainly flattered that you come back to hear about our boy. He is pretty great! My only suggestion is that if you choose to read and follow our story, you understand that debating special needs parents will get you nowhere.

Further, we do not have this luxury of "imagining" what things would be like had extreme prematurity not touched our lives. I can't change the fact that my child has all his diagnosis nor do I want to ponder what he or I would be like if he was totally healthy. To demand that is not only odd, it is a dangerous rabbit hole, certainly not healthy, and most importantly, does no good.

Jack's birth and the lessons I have learned from the past five years will forever be the landmark of my life. It changed everything. It is the perspective that I so cherish and I am much too protective over that perspective to let those who don't understand it, rattle my feathers.

But this week they did. Not every day is a "I feel strong day." Some days are just survival. But that is why we have each other. So we won't lose our perspective or the realization that we have this amazing community. We are not forgotten when we have each other.

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Mariel Morales said...

You are doing fine! I can tell because you've helped me a lot. Now I know I'm not alone. And we will never be too careful with our kids. Me and my 26wk extreme premature baby thank you. Greets from México!!!!

Mel H. said...

People in our culture like happy endings, tied with pretty bows. When a story deviates form that, it causes anxiety. My daughter, a 27-weeker, is a kidney transplant recipient. People refuse to accept that she will be medically fragile, always. If I had a dime for every time I heard "but eventually she won't need meds, right? She will be OK? You won't have to worry?" I am constantly bursting people's bubbles. You keep on being real. And I think your skin is plenty thick.

Kathryn said...

I think the people who say others need thicker skin is because they haven't watched their child struggling to breathe or been on the brink of death. I think those people also don't try to put themselves in others shoes before they speak.
I've been meaning to email you about a 15 year old I met on the Disney cruise this spring. He was born at 24 weeks at 1 pound. He has cerebral palsy and is deaf but his parents take him everywhere. While swimming I was taking to his father and he told me they treat him like their other children. I have had experience working with children who have all kinds of handicaps and I was telling him they have a special place in my heart. He was having so much fun. He loved splashing and going fast in the water. His father takes him to Disney world every single weekend. While on the cruise the Mickey Mouse was the one the young man sees at Disney. Mickey Mouse stopped from being with other kids and came up to him and hugged him and spent time with him and it moved me tears. Jack immediately came to mind :) you are wonderful parents and I saw you guys in that little fellas parents.

Alyson Birt said...

I am so sorry you had to go through all that. People can be very cruel, in ways that are seemingly unimaginable but occur daily in our world. I love your blog, you're one of the very few voices I've found that touches me and my son's experience and makes me feel...known, and not alone. You understand the value of the little things and also of why a lot of the things that (seem) bigger actually aren't even really important. Rock on Jack! (And Mom!)

Amber said...

Glad you get rid of the negative! Those people are so used to the world being for them they hate the idea of letting us carve out a little space of honesty. I love reading about Jack and blogs like this help me understand even if we have lingering issues stemming from prematurity we'll be okay.

Jessi said...

It means so much to me to read your words of encouragement. THANK YOU!

Laura Maikata said...

Oh, I wish I could read the article now! Do you have a link to it somewhere? I missed it the first time around. No, I don't want the negative comments, but by your comments it sounds like something that would resonate with us.