Sunday, April 8, 2012

Embracing Joy

As we were gathering our things on our last day in Dallas I went through the check list of can not forget items

iPad.... check
laptop.... check
suction machine.... check
two feeding pumps..... check
chargers for all electronics.... check
talker..... check

As I rattled the list off out loud Erica confirmed each item was on the hotel dolly. When I got to the talker she confirmed but hesitated a bit. "I have the talker but I have not seen the mount." she announced.

The room was empty. We had already checked and double checked all of the drawers, the closet, and under the bed for any ungatthered items. My head started to spin trying to think of the last time I had that dang $800 l shaped piece of metal which was the link to Makenzie's voice.

It was the first night we were in Dallas at the restaurant. I had brought the talker already mounted to her chair but did not grab the backpack. Forty minutes into dinner Makenzie was done talking and asked for the talker to be taken down. So I took it down and laid the mount next to table, asked for a large to go bag and emptied Makenzie's backpack into the to go bag in order to make room to store her talker.

We left the outing right after dinner forgoing the dance party which would commence next door. We took the limo home and sent the wheelchair back on the bus with Erica. The moment we walked out of that restaurant was the last time I could account for the mount.

Erica quickly pulled out our itinerary for the weekend and dialed the restaurant. After trying to explain what we were looking for and where it was left the answer we got was.... "we don't have it here but we will give you a call if we find it." Crap!!!

"You want to go look for it yourself?" Erica asked seeing the panic in my eyes. "Absolutely" I replied. So as soon as the van was loaded we headed forty-five minutes in the opposite direction of home to Ft Worth. Needless to say after looking in the exact place I left it and then talking to a manager the mount was located and I breathed a huge sigh of relief.

On the way out of town we stopped for food and gas before we hit the pavement again. I pumped gas and then headed in to use the restroom. When I came out Erica was standing next to the van talking to a gentleman and his wife.

The wife introduced herself to me and then told me that they were admiring my van because they also had a 4 year old little girl in a wheelchair. I gave her the five paragraph essay version of the long novel on the types of modified vans and funding. She thanked me for the information, told us to drive safe, I wished her a blessed day and off we drove.

As we pulled out of the gas station Erica asked me what was wrong with their child. I looked back at her and admitted that I had not asked. Which prompted Erica to asked why.

My response kind of surprised me because it is something I don't think I have ever said out loud. "I don't ever ask because it bugs me when people ask me what is wrong with Makenzie." 

"Really, why is that?"

"I guess it is because I don't see Makenzie as a medical name but as my daughter. I really don't give Cerebral Palsy much thought these days and I don't see other kids as a diagnosis either, I see them as someone else's beloved child" I responded.and the conversation was over just as fast as it started.

I have thought about those words a couple of time since then and felt relieved I was finally able to express those thought to someone in words. I don't like anyone....even other parents of children with special needs to ask me what Makenzie "has" because to me she "has" nothing more then an amazing presence on this earth just like the rest of us. I finally said it without guilt and with much conviction and I meant every word.

Sometimes I do feel guilty for being able to "forget" that Makenzie has CP. So often I read on blogs and facebook statements from other parents about how much they miss the child that they lost but still hold in their arms. I empathize but I do not relate.

 I can look at pictures and think of memories of days before her accident and I get pains that feel the exactly the same as looking at pictures of my boys when they were little. The pain is not of better days but of days when my babies were babies not big almost grown up kids. The pain is wanting to roll their seven pound little bodies back up in hospital blankets and stare into there new eyes just one more time. It really never even dawns on me that there was any change or tragedy other then the simple act of growing up.

Then this week when I received Kelle Hampton's book Bloom in the mail I quickly opened it in the middle of the day and with Makenzie cuddled into my arms I began to read.


 Bloom is full of passion, sadness, laughter, and words which spoke directly to my heart.As I was reading these quotes jumped out at me speaking to what I have been feeling for so long. It put more words to to conversation Erica had as we drove out of Ft Worth, talker mount in hand, back on the journey to home.

"I had to remind myself that she had Down syndrome... because I was beginning to forget. 

  "People ask me when it happened and how it happened--that I became okay with a special needs child, that "she has Down syndrome" alert that used to chirp its notification every day, on the hour, eventually faded, followed by the contentment, even joy. People ask when and how the fear disappeared."

This is something that I have thought about a lot lately. When did I let my hair down, loose the pain, and embrace the joy of having a child with special needs? When did it stop hurting to tell Makenzie's story. When did I start seeking therapy as a means to help Makenzie be the best she can be instead of the intense need to "fix" her back to the little girl she was before March 25 2007. The thing is...... I don't know. It just happened.

This life is not without  pain and reminders of times when I did not know doctor talk and took Makenzie to gymnastics instead of therapy but this life is far more about joy and contentment.

"We said that we didn't care--that we were happy to be on this journey. We said we still hurt-- oh yes, we hurt, but that we loved so much deeper then the hurt and that in itself was empowering." Kelle Hampton

Believe... Prayer Works!


Anonymous said...

Beautifully put. This post brought tears to my eyes. I am a special education teacher and I have 10 children who are near and dear to my heart. I love each of them as if they were my own and I can't stand when adults and the their peers treat them different. Everyday I have to remind someone that they are 6-10 year old kids and want to be treated as such. Just because they are in a wheelchair or are nonverbal/use a communication device doesn't mean there is something wrong with them or that it's ok to talk to them like a baby. They are that way because that is how God created them. Yes they have a "label" but to me they are just kids who want to learn and live life. Thanks for sharing your princess and insight with us.

Kathryn said...

How cute are they! Love your blog by the way :)

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