Rolling Along

When Jess told me that she had signed us up for a wheelchair fitting, my first reaction was to resist. I thought up several excuses in my head why Mattie didn’t need one. She was too little-she won’t know what to do with it-we will use it as nothing more than a glorified (expensive) stroller. Then I started to think about what it meant. People would know something was wrong with her. More importantly, I could no longer deny that something was wrong with my daughter. It would be a monstrosity – a constant reminder of the difficulties we had faced and the hurdles that lie ahead. However, the fact remained that it was getting more and more difficult to transport Mattie as she continued to grow. Her inability to move on her own was also keeping her from interacting with other kids. It hurts my heart to see her lying on the ground, stuck watching her cousins and her brother run around, squealing and jumping and playing, knowing that she has no way of participating. Jess and I talked about all of this, and I reluctantly agreed to look into buying her a wheelchair.

The day of the fitting, I left work with my head full of negative thoughts and expectations. When I got home, I walked in to find Mattie sitting in a wheelchair wearing the biggest smile on her face! She was happy. Just as important, she was using it correctly-all by herself! She whizzed back and forth until she rammed into a wall or a cabinet. We would then turn her around, only to watch her take off again. It was as if she knew what she was doing. She loved it! Seeing her so happy was a shock and I immediately realized that I had thought about this all wrong. I stopped worrying about what a wheelchair meant and started thinking about all of the things Mattie would be able to do with it. She could play outside. She could play with others. She could chase her brother!

As I sit here now, I can’t wait for the wheelchair to arrive. I’m excited to have it specifically fitted to Mattie and see what she can do! This could really be a good thing for her….Sometimes a little perspective goes a long way. Check out her video from the wheelchair fitting:

Wheels

A diagnosis is not a prognosis

A diagnosis is not a prognosis. I can’t tell you how many times I have repeated this 6 word sentence. Mattie’s Neonatologist told us this when we were called into his office the day we learned Mattie had PVL (brain damage).

As Mattie grew and failed to meet milestone after milestone, I would almost chant these words in my head each time I saw her struggle to do things that she “should” be able to do. I have always believed that with hard work and perserverence anything is possible. I started to doubt these words I lived by.

How can Mattie sit, stand, or walk if her brain does not know how to tell her body to do it? Each time Mattie struggles to sit up or buckles to her knees when stood up is a consistent reminder of her diagnosis. Wait – a diagnosis is not a prognosis. So we push on. Mattie pushes on.

Then something incredible happens, Mattie accomplishes a new milestone! I think to myself, a diagnosis IS NOT a prognosis and with hard work and perserverence anything IS possible!

Until… the next time I start to have doubts and then this ridiculous cycle starts over again. But today is the day. The day that I promise myself and her that I will no longer question or doubt our decisions as far as what therapies we do, how often we do them, or wondering if we are doing enough, because I can only do what feels right to me and what feels right to Mattie. Progress is progress no matter how we get there or in what time frame we get there.

Mattie continues to prove to me that I was right; with hard work and perserverence anything IS possible! Check it out for yourself. Mattie has learned to sit up on her own!

Mattie Sits

Mostly Smiles

The progress Mattie has made cognitively the past 6 months is so significant I sometimes can’t even believe it myself. Mattie was not even talking last November. She finally passed her hearing test in December (on my birthday) and has made so much progress. She has at least 50 words she uses along with 20 signs she still uses. I can almost breathe a sigh of relief knowing that she is progressing cognitively. We are still asking her to answer for everything rather then assume we know what she wants. She will respond with a “yea” or “no” but as of this week is finally using the word Yes.

We finally received our “GAP Insurance Exception” for speech therapy which means the price is now $20 a session. So as of a few weeks ago Mattie is doing speech therapy 1x week. I am happy about adding speech back into our program. In just the few weeks we have been having speech therapy, Mattie’s speech has already improved.

Mattie continues to see her OT once a week as well as her EI (early interventionist). A few weeks ago we had our consult with hippotherpay, which is a type of PT done on a horse. Riding a horse imitates the same movement we have for walking. We have been waiting for Mattie to turn 2 to try this type of therapy out. I will say that Mattie looked really good on the horse. She was sitting up much taller than I thought she would. The PT in charge of the program thinks Mattie will do really well so we are going to be adding this to her program once a week. I am hoping that Mattie will gain some balance and improve her core muscles.

Riding Hi!

This is a summary of Mattie’s week:

Monday – Speech

Tuesdays – OT and Library Toddler Group

Wednesday – (something will be added here soon)

Thursday – Hippotherapy

Friday – Early Interventionist/Cognitive Play

Sarah, Mattie’s amazing nanny, still does our home program each day with her along with these “extras”. During the day they work on reaching, sitting criss-cross, side sitting, using a spoon/fork, speech/language, puzzles, sorting, and the list goes on and on.

Weekends: We are either in Gainesville, Sarasota, or traveling to another city for ABM therapy. In fact as I write this post, I am sitting in a hotel room in NYC at 8pm on a Thursday night with nothing but time on my hands since Mattie went to bed an hour ago. How times have changed! If you would have asked me a few years back if I would picture myself holed up in a room in NYC for the night, I would have laughed. I have an entire beautiful city right outside my door and here I am, drinking a glass a wine and writing (along with playing candy crush… my new favorite addiction). We are here again in Manhattan for 7 sessions of ABM with Marcy. This trip was made possible by the Ortiz and Gronkowski Jersey fundraisers and the “Masters for Mattie” fundraiser earlier this year ((Thank you!!))

HI NYC! Dinner Central Park NYC Marcy

As most of you guys know, Mattie started to Army crawl after our trip to California to the main ABM Center. We just completed 13 sessons of ABM in the past 3 weeks (between Gainesville and NYC). Mattie is starting to use her knees and legs while crawling, it still isn’t a perfect crawl but progress is progress and I will take it!!

With so much time dedicated to Mattie, life is just going by in a blur these days. I feel like we never stop. We never do stop which is probably why I feel that way. As soon as we are back from an ABM trip, there is something else looming the following weekend. I just told my mom that I am booked until August. How ridiculous is that?!? I keep telling myself the progress Mattie is making is worth it all, but sometimes I feel like at what cost? Will Joba regret traveling around for Mattie, always on her schedule instead of having fun weekends? Will Jim be resentful because I only have so much of myself to give and sometimes there is nothing left for him? Will Mattie ever have a “normal” childhood that does not revolve around therapy appts and the next “best thing” to get her to move? How do we do it all and still enjoy it???

As the days and months pass, Mattie continues to show us what determination and persistence can achieve, and in that, I find my strength, hope, and resolve that it can all be done with mostly smiles on our faces.

Run for Hope

To check out pictures from the 1st Annual Run for Hope 5K – Click Here!

I will admit that the few days leading up to race day, I was nervous, stressed, and driving everyone crazy, namely Jim. I had been up till 1am for almost 6 days straight working on the details and getting everything ready, but the lack of sleep was starting to effect me. Yet on race morning, I woke up feeling energized and ready to run myself 🙂 I was excited to see how the day would turn out.

We had 140 registered 5k runners going into Saturday and not really sure how many more people would come and register the day of. We also had 36 1-milers registered. We surpassed our goal of 125 so I was excited.

Mattie was the star of the day getting her photograph taken with the runners and meeting all the amazing people who came out to run in her race. The morning went by so fast. Before I knew it, the awards were given out and we were cleaning up. The feed back we received was great. We also had some great advice given to us for next year’s race.

Here are our final numbers:
168 – 5K Registered
49 – 1 Milers Registered

We were able to raise a total of $5,160, over $2,500 more than our goal. You can’t even imagine just how blessed we feel. It looks like we will be heading back to California sooner than we thought! With the results we are seeing everyday with Mattie, I just know that even more progress can be made with another trip on the horizon.

We owe a huge thank you to Mindy and Jennifer for coming up with the idea and moving forward with it. If it was not for the two of you, this day would have never happened. To everyone who sponsored, volunteered, ran, walked, supported, donated and just sent good thoughts our way…thank you for supporting our family. YOU are the reason for Mattie’s progress and we will forever be grateful.

With love and hope,
JJJM

HFMC

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Run for Hope Sponsors

Moving Forward – Our Cross Country Trip

Jim, Mattie, and I recently got back from our 9 day trip to California. This trip has been in the making for the past year. The main ABM Center is in San Rafael, just north of San Francisco. Since starting ABM 15 months ago, I knew that we just had to go out there to meet Anat, the founder of ABM, and her top practitioners. This trip was made possible by all of YOU! All 10 ABM sessions and lodging were paid for with donations made to Mattie in the past 6 months. This trip happened because of the amazing outpouring of love and support that had been shown towards Mattie.

Here is a recap of our amazing trip:

Saturday and Sunday

I am catching up on emails as I wait for Mattie to wake up from her nap. We have been in CA less than 48 hours. Last night Jim was in the tub with Mattie giving her a bath. Since we could not bring our special bath tub across the country, one of us has to get in the tub with her to hold her up. This is always uncomfortable and scary for her since it is awkward positioning and she has to rely on us to make sure she is supported. As I am washing and Jim is holding, I glance up at Jim. He had been looking at me. He says “how did we get here?” I give him a half smile and don’t respond. There was nothing to say. The answer is in our eyes, in our heart, and soul and only we can see it. Traveling around the country to get the help Mattie needs has been a constant normal for us. Every penny we save goes to fund these trips. They are not trips meant for fun but the sole purpose of these trips is to give Mattie the ability to move, walk, sit, stand, and run. Something I used to take for granted. We have a mission. We will do everything in our power to help her become the best she can be, no matter the sacrifice. I have come to understand that is the true meaning of selfless love.

We had an opportunity to walk the streets of San Francesco yesterday. Both of us saying how much fun it would be if we came back, just the two of us. I tell Jim that I could never come back without Mattie knowing the ABM center is just 30 minutes away. Then Jim says he believes that one day when we retire, we will be back and Mattie will be independent and we can go on real vacations not therapy trips. Then he asks if I feel the same way and I tell him “I never thought about it”. I tried, at that moment, to imagine it. A time with no kids, no therapy, being carefree and… I couldn’t picture it. Then I realize that I have become so consumed with helping Mattie, that I forget what life would be like if it were… ok I am not going to go there since that is not reality, so I made a mental note to add San Francisco back to the bucket list and another note to go on a much needed adult get away very soon!

Daddy and M

Mommy and M

We headed down to San Jose later that afternoon. This would be our 2nd city on our ABM trip. Mattie’s first 2 sessions would be with Andrea Bowers. I was very excited to finally meet Andrea. She often posts great articles and awesome advice on the ABM FB group and her site. She had a son with CP who is in his 20’s so she always has great insight about being a special needs mom in conjunction with doing ABM. The 2 sessions went great. Mattie seemed to really like Andrea and we saw some great movement come out of these 2 sessions.

After the sessions were over we hopped in the car and headed to our final city, San Rafael. We were able to get a great deal on a rental house, thanks to the owner being very kind and generous. The house was going to be the perfect place to spend the rest of the week. Mattie would have her own room, be able to roll around and get lots of floor time. Jim and I would be able to cook dinner every night (a BIG money saver) and just hang out and catch up on life, since Mattie’s bed time is 7pm.

Monday

The next morning we headed to the ABM Center. I was not sure what to expect, but I knew I was really looking forward to meeting everyone!! As we waited in the lobby for our first sessions, Anat Baniel came out of a room and introduced herself to Mattie. I was very excited to finally be able to meet the woman behind the AB in ABM and who we have entrusted with helping Mattie learn to move. We would have 2 sessions with Anat later this week!

Sylva and Neil were our practitioners for our first day at the Center. They were both fantastic and Mattie seemed to really like them. By the time the 2nd session was done, Mattie was toast. She went to bed at 6:30pm she was so tired from all the learning. So far 4 sessions out of 10 were completed and we both were very happy with the progress and changes we were seeing in Mattie. Yea!!!! Now what were Jim and I going to do for the rest of the night… Netflix and a bottle of wine seemed fitting 😉

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Tuesday

Today is the day we get to have an hour of one-on-one with Anat. I am so excited to see how Mattie responds to her!! I have heard stories from other moms about Anat but I was in no way prepared for what was to come. Jim and I left there feeling like our minds were blown. Anat had a ton of great insight on me and Mattie in just the first few minutes of meeting us. She thinks I help Mattie too much and talk for her (which I do) but to have someone who does not know me point it out made it clearer in my mind just how much I assumed I knew what Mattie wanted. At first when a yes/no question was posed to Mattie she would look at me to make a decision for her. When I would not do it, she seemed confused as though she had no idea how to respond since we never ask her what she wants. It was really eye opening. The first part of the hour was spent with Anat working on Mattie and the last 20 minutes was more for Jim and I. By the end of the hour Mattie was answering yes or no to everything. It was pretty incredible. I did feel like it was more of a psychological session with Jim and I more than a movement lesson with Mattie. It is going to take some time to wrap my mind around what was said. I hope that the Thursday session with Anat is more focused on Mattie’s movement.

Wednesday

Our only day off! We decided to head to the golden gate bridge and walk across it. It was raining so the pics we took were not great but it was pretty cool. Later that afternoon we headed to a winery near Napa. Jim and I both love wine so we were excited to visit a real winery. It was still raining so we were a little bummed about that but we all had fun. Even Mattie!

Bridge

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Thursday

Today’s session with Anat was amazing! It might have been the best ABM session Mattie ever had. Anat made it a point to really push Mattie to show just how capable she is. She had Mattie doing all sorts of new things, from pulling to stand, to twisting her body by using her lower back. It was great to see Mattie responding so well and it was obvious she liked showing off her new abilities. Anat thinks Mattie has immense potential (there’s that word again!) and it was very encouraging to hear that we are on the right path.

Nice Back

Friday:

Mattie is burned out. We knew that 10 sessions would be pushing her but we thought with a day off in between that she might have been able to handle it. Ummm not so much. Take a look at those eyes.

Tired

She is fried!!! Today’s sessions were not fantastic but Mattie was still a trooper! Overall I am very happy with small changes we are seeing in Mattie. She is holding her back up straighter and talking a ton more. She has learned to answer yes and no for what she wants. She has been great this entire trip. I could not be more proud of her.

Saturday

We leave to go back home today. I think we are all ready to get back. I have missed Joba more than words can even describe. Joba stayed with my sister for a week and then with his grandma’s the rest of the time. He did really well while we were gone. I do know that I can never leave him for that long again. Every time I talk to him or Skype him, my heart hurts knowing how far away we are from each other.

Anat and the practitioners at the ABM Center believe Mattie is on the verge of a break through and want to see Mattie back in California every 3 weeks for the next 3 months. As much as I wish it was possible, we just can’t afford to come back that soon or even in the next 3 months. I really feel like this trip was a success but at the same time I am left feeling anxious and guilty that we can’t follow the plan they want for Mattie. It really is an unrealistic plan but I am still racking my brain on how we could get back sooner rather than later. We have come up with the best alternative plan that is doable for now. We have decided to go to Gainesville every 3 weeks for 6 sessions of ABM and continue to see our Sarasota ABM practitioner in between.

Today
We have been back for a little over 2 weeks now and until yesterday I had no real progress to report on Mattie. I know that Mattie needed time to process everything she learned in Cali. So the past few weeks have been relaxed for her with no travel and lots of playing on the floor time. Then (drum roll please) Sarah, Mattie’s super fantastic nanny, says that Mattie used her ARMS to move FORWARD all by herself. So, you may not think this is a big deal, but it REALLY is a HUGE DEAL. Mattie, for the first time ever, moved FORWARD. I am just amazed. I saw it with my own eyes today. I have been crying on and off all day every time I watch the video.

Please click HERE to see this amazing achievement

This, my friends, is what I call success. This is why we believe in ABM. This is because of you. Thank you from the bottom of my heart.

Run for Mattie

The Run for Mattie Team just completed the Gasparilla ½ Marathon on February 24th. Our Fund-Racing team for this race consisted of 7 members who all worked hard to “Run for Mattie”. As a team we raised over $2,500 for this race. We were just amazed at the generous donations that kept pouring in and actually continue to come in. Again, I am left with no words to express just how grateful we are to have such amazing friends.

Running 13 miles for Mattie is an experience I will never forget. In just 3 hours, I went through such crazy emotions. I have been asked how the race went and all I can say was it was good and bad and emotional. I will not lie; I have never run 13 miles before. The best I could do to train for this was 4 ½ miles, so going into Sunday morning I was really nervous but excited at the same time. Jim promised he would run with me. I know that was hard for him as he has run ½ marathons before and can run them in less than 2 hours. My goal was under 3 hours. The beginning went really well, probably too well. Between mile 4 and 5 we started taking walking breaks but we were running more than walking. Around mile 7 I told Jim “I can do this”. At mile 10, Jim gave a pep talk and I was motivated to finish it out. We were on track for 2 hours 40 minutes… then my body took over and gave me the middle finger. I was done. I was cramping, I had the chills, I was hungry, and I started crying. I was a done deal. Mile 10 took us 22 minutes to complete. Then Mindy texted me that she saw a sign that read “Kids with cerebral palsy think running is a gift”. The tears came again and we pushed on. When Tasha handed over our Run for Mattie banner as we were about to cross the finish line, tears came poring out. So, it was not pretty, almost pathetic really, but who cares. I did it. I did it for my beautiful daughter, Mattie, in hopes that she will one day realize that I would do anything for her.
Here is what a few of the Run for Mattie Team said about the day:
“I was so honored to be able to help you guys in any way that I can. It definitely was an emotional experience due to the fact that I almost cried in mile 1.”
“It was truly the most meaningful and emotional race I have ever run. I am so glad I was able to run it with everyone. It really touched my heart to have Mattie as my motivation throughout training and during the race. I was so blown away by the generosity of my friends and family too. I have always known I have been blessed with such great people in my life, but to see them all answer the call, when I asked them to, still had me in awe. I am so grateful to have been able to help Mattie and as with all things in my life, I wouldn’t have been able to do it without the support and love of my generous family and friends.”
“Running this race for Mattie was an amazing experience. Running is an ability so many people take for granted and my hope is that one day my sweet niece will be running along side of me. It was such an honor to be part of Team Mattie!!”

Here are a few pics from the race.

Run for Mattie

Run for Mattie 2

Team Mattie

Team Mattie

The View on the Run

Our Bling!

A very amazing friend put together a Raffle for Mattie recently. We were raffling off a personalized signed game day jersey from Rob Gronkowski, the New England Patriots tight end. With 115 entries into the raffle, the winner was Ian Baxter, who by the way, is a huge Patriots fan. Ian had the shirt personalized with his kids names 🙂 Too Cute! Click this link to see Mattie pull the winner:
http://youtu.be/F9Qm87yGCUI

Signed Jersey

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The past few ABM sessions have gone exceptionally well! We could not be doing as many sessions if it were not for all of you. Mattie has a big 5k race coming up, Run for Hope. Have you checked it out? All of the proceeds from the race will continue to fund Mattie’s ABM sessions. If you can’t be there April 27th, please consider donating or becoming a sponsor, we still have a few sponsorship spots available.

Run For Hope

I know I have said this a hundred times… but… we appreciate the generosity shown to our family. You guys rock and with your support, Mattie is going to go far!

2 Years Later

Exactly 2 years ago to the day, Jim and I were told I would have to live in a hospital until Mattie was born. Just typing this out makes my heart hurt a little. We were devastated. We kept looking at each other wondering how this happened to us, what would happen to Mattie, how were we going to get through this? I have re-read my carepage blog a few times since then. Even now, 2 years later, I have no idea how we did it. I chalk it up to courage, faith, and an amazing support system of family and friends, but it was not easy. I do not wish that experience on anyone.

For those of you that started to follow our story after Mattie was born, it was a rocky road to start with. My water broke at 17 weeks pregnant. We were told several times that we need to have a late term abortion. Obviously that was never going to happen, so I went on bed rest until Mattie was born. Initially we thought Mattie was going to come at any minute, but she surprised us all. Once I was 23 weeks pregnant (6 weeks after my water broke), the doctors finally put me in the hospital since Mattie would be old enough to save (viable). I lived in the hospital for 55 days. Each day never knowing if that was going to be the day Mattie would be born. She had a 12% chance of survival. Mattie was born 92 days after my water broke. It was a miracle! She came 9 weeks early and was 3 pounds 14 ounces.

5 Days Old
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17 Days Old
17 Days Old
Last Weekend
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Two years later, do I regret our decision? Will Mattie regret our decision? The latter haunts me daily. Tonight I held Mattie and we watched Baby Signing Time. She was signing along with the movie and occasionally would look up at me and give one of her million dollar smiles and I know I have no regrets. The past 2 years have been a journey we never expected to be on, but we are here and doing it, mostly with a smile on our face. Mattie has taught me more about life in her short time than I ever thought was possible. Miracles do happen. Maybe Mattie is not perfect, but who is? She is our miracle. Everyday holds the possibility of one 😉

With hope and love,
JJJM

Big Decisions

With all this cognitive development going on, Mattie had not really been “working” on her gross motor skills. Since our last post we have had quite a few ABM sessions in Gainesville and in NYC. We also started back doing cranial sacral massages. The NYC trip went very well. By the last session, Mattie was able to sit up nice and tall, hips were loose, and legs were relaxed. Since we have been back from NYC, Mattie has started to get on all fours in a crawling position all by her self. She is starting to twist her back as she roll which is the starting point to her coming into a sit and she is using her elbows for support when she props herself up. All of these new and exciting movements!! Woohoo! We are constantly trying to make her aware of her body. I am always pointing out her body parts and having her touch her knees and toes 🙂

Sarah, Mattie’s Nanny, sent this video to me the other day. This video shows Mattie cleaning up (takes after her momma). I know I don’t post a lot of videos of Mattie, but this one shows her in her “true form”, on the floor with restrictive movements. CLICK HERE FOR THE VIDEO!

Jim and I ended up making one of the biggest decisions to date as far as Mattie’s therapy is concerned. As of November, we stopped doing all traditional physical therapy. This was not an easy decision. I have been back and forth a million times this past year on what we should do, ABM + PT, only PT, only ABM. It was an internal battle that I fought everyday. How do you take away the one therapy that the medical community “says” works? It was like we are giving them the middle finger and saying “who cares about all your research and studies, we are doing it our way”. That is scary! Once we made the decision, I felt instant relief. A weight was lifted off my shoulders and I knew in my heart and mind that we were making the right choice… for now 🙂

When we started ABM, Jim was skeptical and I was hopeful. When I read that they want you to stop traditional OT and PT, I thought it was crazy. Over time I have really come around to the benefits of ABM and I would be willing to say that a large portion of the progress Mattie has made so far has been a result of our ABM efforts. Is this the fix all, the one therapy that will instantly make Mattie sit up and walk? The answer is no (I am not delusional), but ABM helps Mattie become aware of her own body in her own way. She is never forced to do anything. By her lying down on the ground, she is learning how to move herself like most infants do. The natural progression with babies is to roll, sit up, crawl, cruise, and then eventually walk. Babies have to learn each of these processes and build on them in order to move on to more complicated movements. One of the teachings of ABM is to not do things with a child that they aren’t ready for. The idea is to work incrementally, at the pace of the individual child. This means no walking or standing. We had come to a point in PT that walking was the main goal. Yes, Mattie can be placed in a walker and with assistance she can take steps, almost across a room but… she does not like it and most of the time will cry. When this happens I know that there is no learning going on, her brain is shut off. Can you imagine if you had no balance and were forced to try and walk? Yikes!

As much as I believe in ABM and know that it is helping, I know I need to keep an open mind as far as her progress or even her non-progress. The last thing I want to do is take something away that could be helping Mattie. My hope is that one day we can find a mesh between these two therapies to create the ideal learning environment for her. Until then, we have committed ourselves to 8-10 ABM sessions a month with an upcoming trip to Cali to the main ABM center in March.

Right around the time that we made this decision, a father of a young boy with CP posted this,

“Special needs parents have a tough job. We have to decide what is best for our kids. We have to gamble the most valuable thing in our lives; their future. There is no way to know if your decision was the right one. We will always be afraid we chose wrong. And that’s a good thing. That fear will make us think deeply about every choice we make. But the other side of that coin is that we have to be able to forgive ourselves for the mistakes we make. We can’t let guilt and regret make us give up looking or afraid to try something new. Make the best decision you can then forgive yourself if you were wrong. As long as you do the first part, somehow you will be able to do the second part”.

No truer words!

Mattie Christmas 2012

What exactly is cerebral palsy? How does this effect Mattie?

Today is World Cerebral Palsy Day, the first one of its kind. To me this is a day to spread awareness, love, and hope. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.

Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which can limit movement. Her arms and hands are normally loose but the range of motion in her arms are limited (spastic diplegia).

What does this mean to me, us, her…
Mattie still can’t sit up, crawl or walk (she is 1 yr 5 mo old), but she is a bad ass roller! Her smile is infectious and when she blows me a kiss my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This girl is one tough girl. I know our perseverance will rub off on her. We teach each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time. We are learning and growing as a family with love and a little girl leading our way.

So… take a moment to read a little about CP

What is Cerebral Palsy?
Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body. This results in difficulties in movement and posture. Cerebral Palsy has different causes, and affects each person differently.

What causes Cerebral Palsy?
Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of cp. The condition is not hereditary and there is no cure. Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.

Is Cerebral Palsy curable?
There is no cure for the developmental brain damage that causes Cerebral Palsy. Therapy, however, can help improve muscle function and coordination. Studies have found that children who receive early therapy are more likely to lead a more typical and improved quality of life. Recent advancements in neurological studies have vastly expanded knowledge of brain plasticity (the brain’s natural ability to form new connections in order to compensate for injury). Scientists have learned that the brain continues to reorganize itself by forming new neural connections throughout life.

Common Characteristics and Types:
– Persistence of primitive reflexes
– Involuntary movement
– Disturbance in gait and mobility
– Muscle tightness or spasticity
– Impairment of sight, hearing, or speech
– Seizures
– Difficulty in swallowing, feeding and problems with speech
– Learning and intellectual disabilities
– Abnormal sensation and perception

Cerebral Palsy can be grouped into three main types.
Spastic CP is the most common type of CP. Spastic muscles are tight and stiff, which limit movement. Spasticity may be very mild and affect only a few movements, or very severe and affect the whole body.
Athetoid is characterized by tremors, unsteadiness, lack of coordination, and constant movement. About 10% of children with cerebral palsy have this type.
Ataxic CP is the least common form of cerebral palsy. Ataxia means having a lack of balance. They usually have low muscle tone, a staggering walk and unsteady hands.

Specific words are used to describe the parts of the individual’s body that are affected.
Diplegia: Both legs and both arms are affected, but the legs are significantly more affected than the arms.
Hemiplegia: The leg and arm on one side of the body are affected.
Quadriplegia: Both arms and legs are affected. The muscles of the trunk, face and mouth can also be affected.

(source: United Cerebral Palsy: http://www.ucp.org/)

World Cerebral Palsy Day, on September 4, 2012, is the world’ first! It will change the lives of people with cerebral palsy (CP). The theme for this unique day is ‘Change my world in 1 minute’. There are 17 million people around the world with cerebral palsy. A further 350 million people are closely connected to a child or adult with CP.
This website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. The website also gives people with CP the opportunity to make these ideas a reality.”
Please go check it out here: World CP Day

Mattie and Joba taking part in Hope for Mattie’s World CP Day fundraiser!

Anabella

A few weeks ago Jess and I went to a conference in Orlando for families dealing with disabilities. There were many different hour long courses covering a wide range of topics, from tax planning to how to emotionally cope with having a disabled child. For most of the day Jess and I went to separate meetings, trying to get to all of the classes we thought would be useful. It was the first time we had gone to anything like this and I have to admit, at times it was awkward. I didn’t grow up around people with disabilities and I have not had a lot of opportunities to meet and interact with people with disabilities in my life.

The last session of the day, we decided to go to a roundtable for cerebral palsy (CP). We didn’t know what to expect, but it sounded like a good opportunity to learn from other people dealing with the same disability that we were. By the time the session started there were about 50 people in the room. Most were parents of kids with CP and some even had their kids there. What first struck me was the vast array of handicapped equipment being used, mostly to help the person get around on their own. This is something Jess and I have talked about; what kind of assistance Mattie is going to need as she grows and we become unable to simply carry her everywhere.

This class was a bit different than the others. Instead of a person teaching a topic, this class was more of a “meet and greet” with other people living and dealing with CP. The organizer of the class had us form a big circle with the chairs in the room and prompted everyone to talk amongst ourselves. A couple quickly stood up and announced that they were passing around a notepad and for those who were interested to add their name and email address to the list. In the next couple of days they would be sending out a mass email with everyone’s information in case you met someone you wanted to keep in contact with. Jess and I added ourselves to the list as it made its way around the room.

The group quickly broke into several conversations with Jess talking to a couple of women next to her while I introduced myself to a young couple sitting next to me. About half an hour into the session, I looked across the circle and noticed a middle aged woman in a wheelchair sitting by herself. One of the difficulties of being the parent of a child with CP is mentally dealing with an unknown future. Will Mattie be able to walk? Will Mattie be mentally handicapped? Will Mattie ever have a job? Live on her own? Fall in love? Get married? Not having been around people with disabilities, I had no idea if someone with CP can have an expectation of any normalcy. This seemed like a great opportunity to see what kind of life someone with CP lives. I got up, walked across the room and sat down next to her. She politely smiled as I introduced myself and asked if she would tell me her story.

Her name was Anabella and she was born in a rural part of Colombia. There were difficulties during her birth and when she started missing some developmental milestones, her mother traveled to Bogota´ to consult a doctor. She was diagnosed with CP when she was one. At five years old, she took her first steps. She first learned to walk with a walker, then a cane, eventually becoming able to walk on her own for short distances. She had graduated college with a degree in industrial engineering. At 25 she moved out on her own, becoming completely independent. She is married. In her early thirties she had an accident while grocery shopping. She fell and broke her leg in 2 places. It took her over 2 years to teach herself how to walk again, however, the pain from doing so led her to living in her wheelchair. Anabella spoke about her life with a big smile on her face. She said that people often asked her how she was able to cope and keep such a positive attitude about life; she admitted the question confused her. To her, she was lucky to have the capabilities she had and to be living such a fulfilling life.

Since the conference I have thought a lot about Anabella. She gave me a picture of what a successful life could be for Mattie – what I could hope for. A few days after the conference I brought her up in a conversation with Jess, saying that she would have been such a great role model for Mattie. Jess and I laughed as I suggested that Anabella didn’t really exist and wasn’t really in the room that day – that I had imagined her because I needed to. Jess lightheartedly assured me that she had seen her there too.

A few days later we received the mass email from the couple detailing everyone’s name and email. At the end was a note asking if anyone had Anabella’s contact information. Apparently she had added her information to the list, but her email address was incorrect. They had tried every reasonable variation of her address but were unable to contact her. Sometimes people come into our lives at opportune moments and give us exactly what we need, only to disappear as quickly as they arrived.