Saturday, July 30, 2011

Different Doesn't Have to Mean Bad.

Logan shorly after his birth.

After several bouts of preterm labor, and months of bed rest, I delivered my son, just two weeks early, by emergency C-section. His heart beat disappeared from the monitor as we hit the OR doors. They got him out as quickly as they could, and he had to be resuscitated in the OR. His developmental issues were apparent to me pretty early on. We worried, and did all the early intervention things you would expect. OTs, PTs, Speech therapists, and Developmental Interventionists entered into our lives. Although relatively mild, his issues seemed scary, and I worried about my son's future. I thought I knew a little bit about being a special needs parent.

Morgan shortly after her birth
Then, I found myself sitting beside my daughter Morgan's incubator, staring at my impossibly small 1 pound 13 ounce (840 gram) baby, with tubes and wires everywhere. I realized then, I had only had a toe in the special needs waters, and suddenly there I was, in way over my head, struggling with everything in me to just orient myself, and breathe. Within days, we knew Morgan had a life threatening brain bleed. Her long term prognosis was grim. The Neonatologist had given me a book about preemies, and it said babies with a grade 4 brain bleed had a 50% chance of dying. If she lived at all, it was emphasized to us that she would very likely have multiple major disabilities. The doctors predictions for her included the words "blind, deaf, severe cerebral palsy, and severe mental retardation." Those words, and the terrifying possibilities of each, cut me to the bone. There were no answers, to all the questions I had except, "We'll just have to wait and see." If she lived, what would her life look like? Was I going to be able to be the mother she needed me to be? I felt so inadequate and unprepared.

Thankfully, Morgan lived, and somehow I did too. The first two and a half years were extremely difficult. Among other things, I was buried by her feeding disorder, and therapy needs. Literally, nearly all my waking hours, were devoted to just feeding her. My life became this vicious cycle of pumping breast milk, bottle feeding it to her, cleaning up vomit, then starting all over again.

In the midst of this, someone close to me said, "I miss the old Kris. I am ready for her to come back." This statement was not meant to be hurtful, or insulting. It was an honest statement. She genuinely missed the person I used to be. Living in crisis mode, I hadn't had time to miss the old me.

I thought about it for a long time. She was absolutely right. I had changed. I was not at all the same person I had been. I had been through a great deal, so many miscarriages, Logan's issues, 4 months in the NICU with Morgan. My ability to see past the end of my daughter's bottle was pretty limited at the time as well. I was not available to do many of the things I had in the past. Think about it, where are you willing to take a child you are certain is going to throw up? When you spend all day, every single day just trying to get enough calories into your child, do you take her out, knowing she never eats when she is away from home? Exactly what is more important than feeding your child?

Far more than my social calendar had changed though. I had learned the hard way that two little pink lines on a pregnancy test doesn't mean you'll ever hold that baby. That life isn't fair. Babies die. Some of them suffer life altering, or life ending illness, injury, or disease. I now knew what it is like to have a critically ill child, to spend months on the NICU roller coaster. I now had an intimate knowledge of loss; the loss of so many babies, and the loss of  my dream of a "normal" life. I had lost any sense of control over the events in my life too. I had been dragged kicking and screaming away from my dreams. I had survived moments when I wasn't at all sure I had the strength to even draw my next breath. Those things change you, and there is no going back. It is like finding out about Santa Claus. You can't unknow the knowing. Innocence lost never returns.

The truth is the old me is gone. She's never coming back. I could mourn that loss right along with everything else, or instead I could learn to appreciate the new me. I could allow myself to see the fact that my wounds have left me more than pain, and scars. They have left me stronger, wiser, more understanding, and more compassionate. I am a better person, and a better mother. I am blessed with two amazing children. I love my kids with a fierceness reserved for only for those we have very nearly lost. I don't take them, or any tiny accomplishment that they achieve for granted. I have a mission to carry out now. I have dedicated my life to helping my children reach their full potential, whatever that means for them.

I started my support group, reached out, and connected with other special needs parents. Together we help each other along this journey. Those connections can be an important avenue for sharing, learning, and healing. I feel blessed to be able to help facilitate that in my own small way.

This new me is very different. I have different goals, interests, friends, and a different view of the world. I have had to leave much of what I thought I knew behind. I had to accept things aren't going to be as they were, or as I imagined  they would be. I have had to learn to adjust to a "new normal."

It is true, my whole little corner of the world is different now. I AM different, but different doesn't have to mean bad. Different can mean better too. Seeing that can take some time, but with time often comes perspective. I think I am finally getting there.


To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to Thank you.

- Kristina Smith Blizzard

Monday, July 25, 2011

A Few Feet and a World Apart

Welcome to my brand new blog. I thought I'd share with you a note I wrote. It was written after a particularly trying day out with my children. Everyone has those days when their kids don't exactly act like angels in public, but it is important that we remember not all kids have the same level of ability to behave. Despite their challenges, my kids look typical, and their behavior in public is often met with judgemental looks, or sometimes flat out rude remarks. Unfortunately, this is something experienced by almost all special needs parents. I did not originally write this note with the intent of sharing it with anyone outside of my circle of friends on facebook, but I was immediately encouraged to publish this note. I was told I really needed to, "put it out there for everyone to see." So, here it is. I hope it helps other special needs parents feel less alone, and opens the eyes of a few of those on the outside looking in.

A Few Feet and a World Apart

I will feel better if I get this off my chest, even though I know the people who will read this are not the people to whom it is addressed...

You and I stand just a few feet, and a world apart.
You are the old lady in the restaurant who gave me a stern look, then elbowed her friends, so they could also stare at my daughter. You shook your heads in open disapproval. In your world, children aren't born 3 and a half months early, and they don't have life threatening strokes, therefore they have absolutely no excuse to be using a bottle at 4 years old. In my world, the fact that my daughter can take anything by mouth is both a miracle, and the result of years of painstaking effort.
You are the irritable man at the Science Center who gave my children a blatant look of disgust when they had trouble staying in their seat during your presentation. In your world, parents are expected to control their children in public, and children have no excuse to behave that way. In my world, my children have ADHD and autism, which makes sitting still very difficult for them, even when they are on medication and are really trying to behave.
You are the lady in the mall who rolled her eyes at me because my daughter was making too much noise. In your world, parents should teach their children to use their "inside voice." In my world, the fact that my daughter can make any vocalizations at all is really amazing. Her left vocal cord is paralyzed from nerve damaged caused by a chest surgery which was done when she weighed less than 2 pounds. In my world, not all children are capable of understanding the concept of an "inside voice."
You are the neighbor who notices with dismay that my yard doesn't look quite as manicured as it once did. In your world, there is time and energy to put in to things like that. In my world, I am too exhausted to care much about the yard anymore. I have bigger concerns that consume my days and nights, important things like trying to teach my 4 year old how to communicate her basic needs.

You are the fair weather friends I once had, the ones who simply evaporated while I struggled for months to cope with having a critically ill child. In your world, friends are only worth having if they are always fun to be around, and aren't likely to need anything from you. In my world, friends don't need to be asked. They can see you need help, and are quick to offer it.

You are the checkout lady in the grocery store who said to me, "I am SO glad that isn't my kid," not realizing that it was my own son you were commenting to me about. He was having a meltdown, and my husband was taking him out of the store, while I checked out as quickly as I possibly could. In your world, children with special needs are a curse. You pity them, rather than value them as people. With your eyes, you see only their deficits. In my world, special needs children are a blessing beyond measure. They teach us invaluable lessons in gratitude, patience, faith, and the value of life. With my eyes, I can see the miracles you sadly fail to see. 

You are all the people who smugly pass judgment on us. I know most of you do so without knowing all the facts. I realize you measure our behaviors by the only rules that you know, the rules that govern your world. You can not know how deeply your thoughtless responses cut. On most days, I extend to you a courtesy you fail to give us. I silently pardon, and excuse your behavior. Because you do not live in my world, I know you can not begin to fathom how hard my children work to try to meet the expectations of your world, and that they are doing the best they can despite their challenges.

I both forgive, and sometimes envy you for your ignorance.

...and so ends the rant....with my apologies.

by Kristina Smith Blizzard

To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."!/groups/lovingamiracleismoving/
This is the original support group, all content is open to the general public.

There is a closed group as well "Loving a Miracle - The Special Parent's Safe Zone."!/groups/lovingamiraclethesafezone/
This is a place to vent, outside of the view of the general public.

Here is the link to my public page on facebook, "Loving a Miracle - Special Parents Supporting Each Other":
This is where I share information, and links I think are helpful to special needs parents.

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this note, please send me an email to Thank you.

- Kristina Smith Blizzard