Monday, April 23, 2012

I Am Officially A Crazy Hockey Mom

Life is a crazy thing.

Babies were a whole lot of fun. The crying and sleepless nights of a newborn never bothered me. Tantrums and the strong new found will of the toddler was no challenge for this momma. I remember the finger paint and many art projects which most of the time had learning hidden within the mess during the preschool years and for me the school age kid stage brought with it a whole new list of possibilities.

As soon as Mr 14 turned five we started soccer. He joined a team and I volunteered as the assistant coach. I stood on the side lines during games and cheered my boy and his team on. We practiced dribbling in the yard, and got all geared up every Saturday for a good game of magnet ball soccer.

At school there were parties, homework, new friends, and a lunch number. I remember eating lunch in the cafeteria with Mr 14 many afternoons while waiting for his brother to get out of kindergarten class. At that time Makenzie was little bitty baby and all of the paras at the school just adored her. Many days they would cart her around the lunch room while we ate. Sometimes we would even sneak our lunch outside to have a picnic in the park next to the school before Mr 14 was ushered back to class and it was time for me to herd the rest of the brood back home.

Life seemed to be going so well. Yes, my little family had our fair share of struggles but it the grand scheme of things we were happy healthy and thriving.

Then a curve ball was thrown and knocked our smooth sailing life way of course.

Soccer stopped, lunch with my boys in the cafeteria ceased to exist.

Not only did I watch the dreams I had for my daughter slip away but also so many of the dreams I had for my boys slowly started to fade away.

I slipped into the caregiver role for Makenzie. I was gone away from home 52 weeks in the first two and a half years trying to help Makenzie regain what she had lost.When I was home I was so tired from sleepless nights, incessant crying, research, doctors appointments, the stress of constant vomiting, and a million therapy sessions.

Over the last 5 years I have watched as many of my friends who also have children with similar stories have gotten back into all of the many activities with their other children. I have watched in envy wondering when Makenzie would tolerate being toted to practices, games, late nights, early mornings, loud sidelines, and 12 hour days spent at tournaments.

While I waited, my mom and dad took over the "fun" stuff with the boys.  I will be forever grateful! I am so very glad to have such an amazing family who was able to step in when I had no choice but to step out. There have however been times when I have been scolded for not asking the boys about their "fun" weekends with grandma and grandpa. Some days I just wanted to scream at the top of my lungs...... "NO, REALLY,  I DON'T WANT TO KNOW HOW MUCH FUN YOU HAD DOING ALL OF THE THINGS I HAVE DREAMED ABOUT DOING WITH MY KIDS FOR THEIR WHOLE LIVES........INSTEAD......... I JUST GET TO HEAR ABOUT IT. ALL OF THIS HURTS PLENTY ENOUGH WITHOUT YOUR GUILT TRIP. THANKYOUVERYMUCH!

Over the last year however the tides slowly turned. Two huge things happened. First and foremost Makenzie stopped vomiting. She still has a bit of reflux but tolerates 8 ounces of her blended formula  in about 25 minutes for a total of 1.5 per day as apposed to the 12-22 hours feeding her used to take. I also do not worry about her choking or loosing her meal while we are out and about anymore.



The second huge thing was getting our modified van. I knew we needed a van but I had no clue how much until we got it.I no longer have to lift anything to load her into the car. I can get her out the door, strapped into the van, and be pulling out of the driveway in 3 minutes flat. Makenzie is positioned correctly and because of that she can even be fed while driving. Which means we can go where ever, whenever!



With that said a couple months ago two of my boys joined a recreation roller hockey league. I was in love and felt so alive. I found myself cheering my boys on once again. We tested the waters with a few late games and early morning practices. Makenzie didn't mind the noise, and I was able to keep her on our feeding schedule. Makenzie did amazing with ALL of it and the boys LOVED playing



So being the person that I am we did not just test the waters instead we jumped right in and joined the club level team.

I can now officially say I am a HOCKEY MOM to not only 2 kids but 3 (Mr 14 joined the rec league this season)! I even have the swagger wagon to prove it!

We have skates, sticks, pads, pucks, a goal to use at home, 7am practices, 9pm games, and weekend long tournaments. There is hockey peeking out of every corner around here!

This weekend we headed about an hour away for Mr. 10's first tournament. I had no clue what to expect other then that his first game was at 6am on Saturday. So we made a weekend out of it complete with a night at a hotel. Happy hour with Shirley temples, Margaritas, chips, swimming, pinball, and 5 hockey games in one day starting at 6am and ending a 4pm.

 

Mr 10 did FABULOUS!!! His team won 4 out of five games loosing the last game in the final second. He won a silver medal which he has been carrying around all day! I am so very proud.



I found myself in tears while unpacking the car when it full hit me that I had done it! I was there! I screamed and pounded on the seat cheering my boy and his team on once again. I watched him almost score and I watched him get knocked down. I gave him the pep talk before each game and patted him on the back in the locker room when he stepped off the rink. I was there. For the first time in 5 years I didn't have to hear about it because I saw it first hand!

 

So today for the first time in five years I decided to throw caution to the wind and strap on some skates, grab a stick, and get to work helping my boys practice their hockey skills. Makenzie watched as her mommy broke a sweat while going head to head with her brothers on the rink. I am very proud to say that I didn't even kill myself in the process!!!!

Life is so good for this new crazy hockey mom!!!!!!

Believe... Prayer Works!





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!







Thursday, April 5, 2012

Road Trip

This post is going to probably going to be all over the place but thus has been the way life has been around here for the last few weeks.

About a year ago Miss Stephanie, one of the most important people in our lives, walked through our door and announced that she was getting married.

Stephanie, until recently when life took her across the country, has been Makenzie's OT and one of her biggest cheerleaders for the last 4 years.

Three years ago during a therapy session Stephanie informed Makenzie that one day when she got married she was going to WALK down the aisle in her wedding.

Shortly after the big announcement Stephanie asked Makenzie to be one of her flower girls!!!

We have spent the last nine months looking at dresses, talking about what walker Makenzie would use, what shoes she would wear, and making plans to attend the wedding.

Last Tuesday afternoon my good friend Erica, her son Morgan, Makenzie and I packed up the van and pulled out of the driveway with the afternoon sunset at our backs and the radio blasting. We were headed 13 hours away to Dallas, Texas!



We stopped overnight and headed into Dallas Wednesday night. Makenzie did great. She just rode and rode. We listened to music, watched cartoons on the iPad, giggled, stopped for dinner, got gas, used more public restrooms then I would like to recount, and slept ....ok.....Morgan slept.

Once our feet hit the ground in Dallas we did not stop going for four days. 

We danced and partied till we couldn't anymore. We were up past midnight for 5 nights straight.  Makenzie and I experienced our first party bus and several rides in a stretch limo. Most importantly we got to share a very important day with Stephanie and Justin.

We met many amazing people. We attended a dinner party, bridal luncheon, wedding rehearsal and rehearsal dinner. Makenzie had her hair done up like a princess with all of the other members of the wedding party and we headed off to the wedding and reception

The whole week was very emotional for me.

I dearly miss Stephanie. I miss her laugh and smile. I miss the conversations we shared about life where we realized how insanely similar we are. I miss the look of unconditional love she has in her eyes every time she sees Makenzie. I miss the progress Makenzie had when she worked with her. I spent a lot of time last week missing Stephanie.



Then there was the whole wedding. It was so beautiful. Stephanie could not have looked any more stunning and I have not had so much fun in a very long time. Every single event was beautiful and brought tears to my eyes. I watched Makenzie dance and laugh night after night, and then I watched as she walked down the aisle right before Stephanie. I saw my daughter walk down the aisle three years after a conversation which in that moment seemed so out of reach. I watched a very profound miracle unfold right in front of my eyes. Very overwhelming! God is so so so very good!

 



This is where I admit to not taking any pictures of the grand event. I was busy getting Makenzie ready and helping her PT get her down the aisle. There were pictures taken and when I get my hands on then I will post them.

 


On top of all the wedding events Makenzie's Granny Kay and Paw Paw Pat came to visit us. We spent the day after the wedding hanging out around Dallas and even made it to the Dallas World Aquarium. It was a short visit but so wonderful to get to see them for a while!



We headed home just in time to miss the tornadoes in Dallas. The drive home went just as smooth as the drive there other then taking a short detour because a mountain pass had been closed due to snow. We drove for hours in the middle of no where. We took in all of the small towns, tractors, trains, silos, and of course more cows then we could count.



As we pulled back into town tears began to form in my eyes. Not only were we home but Makenzie and I had successfully completed a road trip. Six months ago I didn't think this would ever be possible. It created in me a sense of freedom I have not felt in 5 years. A freedom to go and do things I thought would forever be impossible.



I told my boys before we left that if Makenzie was a good traveler we would plan our very first family vacation. The tears came as I realized that I would be able to walk through my front door with a smile on my face, several I love and missed you, and then the grand finale...... the announcement of a month long summer road trip to see friends, go to the beach, Disney, and Sea World! AMAZING!!! The looks on their faces were priceless and this mommy doesn't feel like life could get any better! FREEDOM!!!!

So tonight my van has been scrubbed down. The bags are unpacked and we are well on our way to finalizing plans for our next adventure!

I am so content. I am so thankful beyond what words could express for my van. I am in love with the amazing people in my life, and incredibly thankful for things like this wedding which push me out of my comfort zone and force me to try new things.

Thank you Stephanie and Justin for the wonderful time and for loving my little girl with such passion!!! Your wedding was not only beautiful and more fun then I could have ever imagined but it changed my family's life!

Believe.... Prayer Works!









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