Tag Archives: Special needs

2 Years Later

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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

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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

Change for Mattie

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Somehow, someway an entire middle school was able to raise $1,306.83 for Mattie. The amount is amazing. The day my mom told me the total, I was in shock. So many amazing people came together to make this happen. A special needs class civic project taught me more about giving then I have ever known. The thought of other special needs kids helping out Mattie is just amazing. What a beautiful lesson to be taught 😉

Jim recounts our experience:

Ms. Emison, a special needs teacher who teaches at WeightmanMiddle School, (the same school as Jessica’s mom – who is also a special needs teacher) started a civics project called “Change for Mattie”. The basic idea of the project was for the students to learn how they can and should always give back to their communities in some way, shape or form –  life lessons in community service! The students began by using the brainstorming process to learn how each student’s idea should go on the board without rejecting anyone’s idea.  Then they discussed the different ideas on the board to determine what would be the best idea for their civic project. Many of the students had seen pictures of Mattie after she was first born and knew about all of Mattie’s doctor appointments and therapies. So when Mattie’s name came up, the class had made up their minds to ask the rest of TEWMS to help them raise money for Mattie!

The entire student body was told that the class which raised the most money would be treated to an ice cream party where they would have the opportunity to meet Mattie. Each morning a video would play of Mattie. This video showed how hard Mattie worked to try and do what most children take for granted.  The students and staff pulled through from their hearts and piggy banks to donate, showing tremendous support for her and the classroom’s project. The talk on the campus was how much they wanted to meet Mattie, they weren’t interested in the ice cream!

One sixth grade girl especially took the challenge to heart. She went home and told her mom that she was going to help raise money for her new friend Mattie who couldn’t walk. The girl had her mom bring her to a local bakery and bought cookies. She then set up a stand in front of the cafeteria before school every day and sold the cookies at a profit. The little girl raised $78.00 for Mattie all be herself!

This past Friday Jess, Mattie and I headed to the school to accept the money the students, teachers, and administrators had raised and to participate in the ice cream party. When we arrived, Jess’ mom met us at the front desk and we proceeded to sign in. We had about 20 minutes before the ice cream party started, so we went to her classroom and had the opportunity to meet the children in her class. It’s really easy to get caught up in the everyday efforts it takes to raise Mattie. Meeting these kids with other difficulties really put things in perspective and reminded me to be thankful for the capabilities Mattie does have. My heart breaks for the parents of other kids with special needs and it is important to realize that while Mattie has her own difficulties, she also has a lot of things going for her and that not all kids are as well off as she is. This thought also extends to Joba and how lucky and blessed we are that he is healthy and fully capable of doing anything he decides to do in this world. I wish everyone could have an opportunity like this and to truly gain this perspective (the world would be a better place!)

We also had the chance to go to Ms. Emison’s classroom and meet her students. All of them immediately recognized Mattie from the posters that had been hanging around the school and the kids were all very excited to meet her. It was immediately clear that these kids had personally invested in the project; you could see it on their faces as soon as they caught a glimpse of Mattie. It was also very touching knowing that these kids were all dealing with many of the same issues that Mattie has or will be dealing with.

On the way to the cafeteria we had to walk across the school courtyard where hundreds of middle school aged kids had just been let out of lunch and were getting some fresh air. As we made our way across the courtyard we could hear the voices “Hey, there’s Mattie!” and “That’s Mattie!” We were quickly surrounded by scores of kids wanting to take her picture. It was great to see how excited all of the kids were to get to see Mattie-especially knowing how much effort they had all put in to help our little girl. She was a rockstar!

Once we made our way to the cafeteria, two classes of about 25 kids each were led inside. Several teachers and school administrators were there as well. Again, the kids were excited to see Mattie and were taking her picture, commenting on how cute she is. After everyone sat down, a young girl with cerebral palsy used her walker to come over and give us an amazing gift.

The girl who presented us with the check had told her parents about the fundraiser and they had also decided to come to the party. It was interesting to hear their perspective on raising their daughter and some of the difficulties they had overcome. They told us that Mattie had a lot of the same mannerisms as their daughter and that their daughter didn’t speak or walk until she was 6 years old. Everyone says not to compare kids with CP because no two kids or their circumstances are the same, but it is difficult not to. While it was exciting to hear a similar story as ours and where they are now, it also put into perspective the long road we have ahead of us. This is part of the emotional back and forth parents of a special needs child have to deal with.

Going to the school to see all of the kids was such an amazing experience and very uplifting! With all of the money these kids raised we have decided to bring Mattie back to the ABM practitioner in New York City that we had so much success with this past summer. Thank you Ms. McCallum, Ms. Emison, all of the teachers, administrators and of course, all of the kids for your amazing efforts! We are truly blessed to have you be a part of our journey.

* We took some amazing pics of the ice cream party but for privacy reason we are not going to post them… Instead enjoy some pics from my “photo shoot” with Mattie and her BIG donation check 😉

 

The Price of Success

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In a recent post we discussed the differences in traditional therapy (OT/PT) and ABM and the resulting clash of theories. The simplest way I can describe the difference is that the traditional theory wants a special needs child to mimic the development of a healthy child in milestones and timelines, while ABM focuses on the child’s current capabilities regardless of what they “should” be doing. This means that while OT and PT want us to put Mattie in the standing position on a regular basis, using her walker to practice walking, ABM doesn’t want us putting her into any position she can’t get into by herself, including standing. This dichotomy often puts us in a position of having to decide between the two theories and the multitude of therapists helping Mattie. This is not the only source of doubt and second guessing for Jess and I.

Like everyone, we have a finite amount of resources. While traditional therapies are covered by insurance, alternative therapies like ABM are not. There are other alternative therapies that we would like to try as well, cranial sacral massage (we did this for a while, stopped, now we are thinking of starting again) and hyperbaric oxygen therapy (HBOT) are two which we have discussed. In addition, there are some different types of surgeries and treatments which have been shown to help children with high tone/CP, as well as different orthotics-specifically a doctor on Long Island who makes customized AFO’s which some other parents we know rave about. This leads us to the question “is this the best use of our money?”

So far we have devoted most (if not all) of our money to ABM. We’ve done this because we believe in its benefits and we believe it has helped Mattie a great deal. This doesn’t mean that something else won’t help her, which is where the difficulty lies. As the money spent on ABM adds up and zero’s are added to the total amount we have spent, it is difficult not to second guess yourself. Would that money be better spent on HBOT? Is it worth the money to fly up to Long Island and get Mattie fitted for special AFO’s? Answering these questions becomes difficult when you realize that our resources are a zero sum game; spending money on a particular surgery is going to mean that we don’t have enough to go to the ABM center in California for therapy. More of one equals less of another.

For me, the questions and doubts can add up and sometimes result in feelings of guilt and inadequacy. As a father, I feel responsible for providing for the needs of my family. What kind of father am I if I can’t give my daughter everything she needs to have the most normal life possible (whatever that is)? What kind of man am I when I have to ask people-family, friends, even strangers-for money to help me take care of my daughter? This whole experience is incredibly humbling.

Jess and I are extremely lucky to have such a generous group of family and friends. We realize there are families out there with children that have more difficulties than Mattie and fewer resources to turn to for help. And so, at the end of the day we go to bed feeling fortunate. Fortunate to have such a large group of doctors, therapists, practitioners, family and friends to turn to for help. And ultimately, fortunate to have Mattie, secure in the knowledge that we have done everything we can to help our daughter, and will continue to do so.

Good morning Momma!

I am learning to get my legs underneath me…

and to lift myself up…

and to almost sit up, all by myself!!

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

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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!

A Nanny’s View

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When I first met Mattie she was four months old, and I had no idea what I was in for…

At the beginning, Jess and Jim discussed with me the unknowns and the concern of what Mattie’s future would be. There was no roadmap as to what progress could be expected, what milestones would be reached, or how Mattie’s journey would unfold.

From the information presented to me I tried to understand what challenges not only Mattie would face, but Jess and Jim as well.

I’ve worked with Mattie and her family for a year now, and as with all children it seems it has just flown by. In that short time I have seen so many changes in her. She seems more comfortable in her own body. She is curious and playful. She laughs constantly and for some reason thinks it’s hilarious when she (or anyone else for that matter) sneezes. Mattie can roll, hold herself up on her hands and knees, and has more control of her head and upper body. She even took steps in one of her occupational therapy sessions! Assisted steps now, but what does her future hold?

I can hardly imagine the struggle Jim and Jess have when trying to choose what the “right” thing for Mattie is. There are so many options, so many different ways of thinking when it comes to treatment and therapy for her. I can only hope they find some comfort in the “little things” that everyone around Mattie gets to see everyday and have confidence that they are on the right track.

Although I am not a parent, my previous childcare experience exposed me to the cognitive and physical motor skills that develop on a rather expected course. Mattie is on her own schedule, and that assures one thing. Nothing Mattie does will be expected. No milestone will be overlooked, and everything she accomplishes will be extraordinary.

So like I said before, I had no idea what I was in for. On my first interview, when Jess and Jim first described Mattie and her journey, which had really just begun, I knew I was up for the care Mattie needed, but I never knew I would gain so much by just being a part of her life. “Hope for Mattie” could not be a more fitting title. I have nothing but hope for her. Hope that she will continue to learn, continue to laugh, and continue to improve. Also I truly hope one day Mattie comes to realize and appreciate the continuous outpouring of love and support that comes not only from her parents, but her entire family, and really anyone who meets her. (Come on, how you could not love that FACE!?)

So if you asked me what it’s like to work with Mattie? It’s nothing short of inspiring. Mattie’s story is just beginning, and I can’t wait to see what happens next. I feel blessed to be able to share in the joy that comes from everything she does.

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Am I a special needs mom? I am a special needs mom.

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Back when Mattie was 4 months old, I overheard Jim calling Mattie “my special needs daughter”. WHAT?????? I was shocked, then sad, then in denial in all of 1 minute. That was the first time that anyone has said that aloud, let alone her father. My thought process went a little like this: Is that what people think? I don’t think that. I WONT say that! Am I the delusional one? Mattie is fine. She is not a “special needs” child.

At that point we were still not sure how Mattie’s PVL would affect her. It seems as the months passed and she was failing milestone after milestone, the “special needs” tag kept popping up. I eventually learned to say those words and accept it. I am not sure when that exact moment of acceptance occurred. I think it was always there. I was just not ready to admit it. I was still holding on to hope that everything was going to be ok.

We knew from the moment my water broke that Mattie’s life may not be easy. I had many days to think about it as I lied in my hospital bed. There were many long days and nights to think and pray and wonder and hope and accept. I am often asked how I can move forward after finding out my daughter had brain damage. The answer is not a simple one, as I have so many emotions, but I do know that I accepted the possibility of something going wrong long before Mattie was even born. Does that make it easier? Maybe in some ways it does. Some moms go through pregnancy with no complications only to find out after their baby is born that something is wrong, no warning given, not even a thought of something bad happening. These moms are not given a choice. We had a choice and we had time to accept our choice, no matter the outcome. I have no regrets; Mattie’s smile makes it all worth it, but will she? My biggest fear is that one day she regrets our decision. It is tough to even say that out loud and when I do it brings tears to my eyes. But I don’t want her to ever feel like she would rather not have lived then to be …disabled. So how do I teach her that???

A fellow SNM posted a blog just yesterday called “Mommy, will I walk when I am older?” OMG! I was crying reading this. This could be Mattie one day. What would we even say to her? How would we choose the right words to make sure she accepts herself for who she is and not become saddened by her limitations? I have a hard enough time coming up with a response when Joba tells me that one of the kids in his class does not want to be his friend… this is… just… mind boggling! I truly appreciate what this mom has to say about it. As I share and learn from other SNM, I continue to grow as a mom and I continue to gain the confidence I need to know how to handle moments like these.

This short essay goes around the special needs community quite often.

Welcome to Holland by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Of course I went through periods of anger, sadness, pity, mourning for what could have been. I still have those emotions. I am not sure they will ever fully go away, but I also have periods of joy, happiness, and amazement. Raising a special needs child has changed my life. There is no more ”should be” in my life (she should be walking, she should be sitting). The “should be” has been replaced with patience, understanding, love, and compassion at the samllest things. Every little or big milestone Mattie accomplishes makes my heart burst with love and joy. Mattie is teaching me to slow down and take it one day at a time.

As all moms do, whether you are a “special needs mom” or a “normal mom” we still want to see our children grow up happy, healthy, self-reliant, and confident in themselves and their abilities and succeed in life. We want our children to feel loved and show love because in the end “all you need is love”.

I can only hope this for my beautiful daughter, Mattingly Hope.

In a text from Sarah last week, “rockin the 4 point”. This made my day! Thank you 🙂

A Dad’s View

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Jess and I thought it was time that I wrote an update for Hope for Mattie in order to give another perspective of what it’s like being a parent of a child with special needs. It’s weird just saying that out loud. I find myself telling random people when they ask if I have kids. I don’t know why I do it, perhaps because it dominates so much of our lives that I can’t just say “I have a daughter”. Lately I’ve been making a conscience effort to not describe her as having special needs.

For those of you who have not yet had the pleasure of meeting Mattie, she is an extremely happy baby. She’s always smiling and happy to see a familiar face. She’s making a lot of funny noises right now as she tries to figure out how to express herself. She also cracks up laughing at the most random moments, which can be pretty funny in itself. In the mornings when I go to get her out of bed, she always greets me with a big wide grin and a high pitched squeal. Upon picking her up she will take a moment to rest her head on my shoulder with her arms out wide as if she is giving me a hug. This is the best part of my day.

This past year has been a blur. Time seems to move really fast and it seems like there is never enough time to really soak everything in. I’m not sure this will ever change as the thoughts and emotions we deal with greatly vary and are constantly changing. By the time I’ve thought about something long enough to organize it in my head and figure out how I’m going to mentally deal with it, five other thoughts have crept in. To me, that is the most difficult part of all of this-mentally accepting and dealing with everything. Sometimes it’s like being shell shocked-you feel numb and outside of yourself. Thank God for my wife! She is constantly doing things to help Mattie, from researching new therapies to organizing her doctors’ schedule(s), Jess is amazing. While I worry that she’s going to drive herself crazy in the process, there’s no denying that Mattie is so, so lucky to have Jess as her mother. I’m very confident I could not do this without her.

I know this is a blog about Mattie, but I can’t talk about her without bringing up Joba. The resiliency he has shown through all of this is nothing short of remarkable. Between all of the doctors visits and the weekends away from us while we are inGainesville, he never skips a beat. In a weird way he has made this whole process easier, providing comic relief, laughter and a well needed hug at the most desperate of times. Without him I would have lost my sanity by now. He’s also a great reminder that life goes on, regardless of the difficulties that we face.

Lastly, there are all of you-the family, friends and perfect strangers that seem to pop up just when you need them. The outpouring of support has been truly uplifting. Please know that Jess and I really do appreciate everything that has been done to help our family through this past year and a half. As we look to an uncertain future, Hope truly reigns supreme.