Thursday, March 24, 2016

First Theater Play

Kevin had a new and a good first experience when we took him to see "Dorothy in Wonderland" at a local community theater. Not only was Kevin able to tolerate the clapping throughout the performance but he was clapping along - his right hand claps the top of his left hand. I'm so proud of him, I love it!

A family from our church was part of the cast. 
The Scarecrow is Kevin's sitter

Life Challenges and Blessings 2016

We were asked to give a talk to a young adult group last week - to share our experiences on life challenges and the blessings that come through the challenges. I was so thankful for this opportunity to share our story. I found it to be a wonderful and healing opportunity for myself to look back and reflect over my life. If you are part of our life or follow on the blog, you have already read or have heard most of what I talk about, but there is something different when you are able to see all the years put together at once. It doesn't seem so scary and it's easier to see some of God's plan and the blessings he has bestowed on us. So I had to post - to help me remember when I need it. 

Jon was born and raised in north east Ohio
I was born and raised in south west Ohio
We met in the middle at Ohio University in Athens. We met the first month of our freshman year and I knew almost immediately that one day I would marry this guy, even though we were "just friends" for the first couple years. 

We'll be married 19 years next month and we have an 11 year old son, Kevin. 

Jon is CEO at Midwest Health Services.
I have the best job in the world, I am Kevin’s Mom.

From the beginning, my dream job was to be a Mom. It took us a long time to have a baby, which was our first big struggle. This was something that challenged us for years. Before I was even pregnant, I envisioned what life would be like with a baby and the family that we would have. But soon after Kevin came into this world, the life I had planned quickly disappeared. A few hours after Kevin was born he began having seizures. To make a long story short, Kevin has Cerebral Palsy because of a brain injury he had before birth that was caused by a stroke. This was devastating. The normal life that I had been planning and impatiently waiting for had drastically changed.

As I look back over my life before Kevin, I can now see some of God’s plan for me. When I graduated from college and was unable to get into graduate school - it felt like failure. But I got a job and I loved working in the nursing home with Alzheimer residents. Some of those skills have helped me as Kevin’s mom. I think God was also creating a good foundation for our marriage while we worked through small and big challenges, those seven years before Kevin was born. This has helped us withstand the struggles and demands of being parents of a special needs child.

Today, our life is full of daily challenges and important decisions raising a severely brain injured child. Kevin is non-verbal which sometimes creates behavior issues when he doesn’t know what to expect or simply doesn’t want to do something. The stroke affected the left side of Kevin’s body. It affects his ability to use his left arm and hand. His distance walking is limited by his left foot. We currently have a major decision to make on whether to go ahead with the recommended hip and foot surgery for Kevin. You see, after the first couple years of Kevin’s life we learned that the medical professionals don’t always have all the answers and sometimes there are other options available that have more success.

On February 26, in 2006 our church held a Healing Service with Dr. Issam Nemeh, the healer from Westlake. Kevin was 16 months old at that time and couldn’t even sit up. He had major food issues. I had to buy a special formula and thicken it to spoon feed him and it often times came back up. He was also having frequent seizures and was on a lot of medication. I can’t hardly look at pictures of him during that time because his eyes are glossed over with medication - he’s just not there. After the healing service, Kevin did not get up and walk out of church that day. But a day later, Kevin did do something that I had been yearning for - he gave me my first hug. Then, a few months later, my Dad picked up a book at the library that was titled “What to Do About Your Brain-Injured Child”. After my Mom read the book she immediately sent us two books for us both to read. Everything that the author, Glenn Doman said make sense. He had answers to help children with special needs and developmental delays. Our life drastically changed again. We traveled to Philadelphia to learn more about what Glenn Doman and his team had to teach us about brain-injured kids in a week long parent course. We spent three years with the Doman family at The Institutes for the Achievement of Human Potential and now we are with The Family Hope Center. Twice a year we return to Philadelphia where Kevin receives a neurological evaluation to determine the progress he has made in the last six months. Then they create a home treatment program that includes nutrition, physical, intellectual, sensory, and social programs for me to do with Kevin to help him develop and reach his fullest potential.

We have been extremely dedicated to the program. When we first began the program I cut out everything from my life to devote myself to Kevin’s healing journey. But I also cut out “me time” and “couple time” and it wasn’t long before things began to unravel and we were struggling in our marriage. Friends, family, and especially Jon would tell me that I needed to take care of myself (put my oxygen mask on first). It took me a few years to understand that it was okay for me to do this, and that sometimes taking a break to spend time together as a family is more healing than checking off a long list of program activities. 

What have we gained from this program? Kevin has been seizure-free and medication-free since we began, when he was about two years old. His food difficulties immediately disappeared and he eats like a champ. He learned to crawl, creep, and after a lot of hard work, extra hands, and prayers he finally took his first steps on February 26, 2009 when he was four years old. Three years to the day after the Dr. Nemeh healing service. I know that my Dad bringing home that book by Glenn Doman, was inspired through God, and from our being at the Healing service with Dr. Nemeh, and all the people and strangers that were praying for us.

What else have we gained from this program? A supportive community. 
Our story could not be told without including the countless number of family, friends, neighbors, strangers, and our church community that have helped us. You’ve heard the saying - it takes a village to raise a child - well we have had more than 100 people helping and supporting us in one way or another. And even more people praying. We had this one exercise to do with Kevin, called patterning, it required 3 people and we had to do it 10 times a day, 7 days a week.  Some people helped daily, some weekly, and some people walked in our door exactly when I needed them to. Some people helped us by preparing food for Kevin, some built crazy devices to help with Kevin’s healing, and some helped us financially. But we were most thankful to our family who loved and supported us and understood that we needed to make a major change to our life to help Kevin.

At times, I experience a sense of loss when I start comparing Kevin to his peers and the milestones that he may never attain and a life that can look and feel much different from everyone else. Birthdays and holidays can be difficult for me. Christmas is an example, Kevin doesn’t get excited about gifts, in fact there have been times when opening gifts make him cry. I know that missing out on gifts isn’t necessarily a bad thing but I feel like I’ve missed out on that Christmas morning excitement. Until I recently realized that every time we visit my family or they visit us Kevin is full of anticipation, and we can predict that the first morning of the visit, Kevin will wake up very early - like Christmas morning early so that he can climb in bed to snuggle and giggle with Grandee and Pap or whoever is visiting. I love this blessing and it is way better than being excited over gifts. And we don’t have to wait until Christmas or a birthday to have that magic moment. 

We have had other challenges in our life. A couple years ago my Dad received the gift of life, through organ donation of a heart. So here, we are definitely on the receiving end of a blessing. During the time my Dad was in the hospital waiting for a heart, was a very uncertain time in our family. This is another example of family, friends, and strangers supporting us with their prayer. My sister’s mother in law spear headed getting prayer warriors represented in every state of the US and beyond to pray that my Dad receive a new heart in time. Every time I stop and think about this great gift that has been given to our family, I immediately think of the 19 year old girl whose heart now lives in my 68 year old dad. I think of her family and how they miss her and how devastating that must feel. I send them love and peace in all these moments hoping it eases their pain and brings them comfort.

The year 2014, was a particularly challenging year for us. The year began with my Dad’s recent heart transplant, when we were still holding our breathe that the heart wouldn’t reject. In February, after suffering for years, I finally had surgery for a hysterectomy. In April, (before I had fully recovered and gained my strength back) Kevin had a minor surgery on his ankles and was off his feet for 4 weeks. In June of that year, Jon’s Dad died. In September, my Grandma, died. And Kevin had his tenth birthday - a milestone that wasn’t easy for me.

So last year in 2015, I declared that it would be a year full of blessings. And in this momentous year you will see how some of our life challenges came full circle. At first, the year didn’t seem to be off to a good start. Jon was in his 18th year as a commercial banker. There were rumors of job cuts. Jon was very successful at his job, always in the top percentile, and normally didn’t worry about cuts. His job was saved but for some reason for the first time in the 24 years that I had known him, Jon was worried, anxious, and depressed about his job and about our finances. This was always my role - to be the worrier. After a couple months Jon was still depressed and we decided a job or career change might be needed. I’ll get back to Jon later in the story. First I have to tell you about what else was happening during this same time. 

In January, our church offered a program called Christ Life (MaryBeth). I only signed up the day it was to begin. When I arrived that night, sitting at my table was Len. When I first met Len a few years prior, he had said to me “I know who you are - your son is the reason I went to see Dr. Nemeh and was healed from my terminal illness.” I don’t see Len very often, so I was happy to see him and his wife in my group. He asked if we had been back to see Dr. Nemeh and I said no. He asked about Kevin and I said things were ok - not wanting to be pessimistic about things but also always hoping things were better for Kevin.  Later in the evening, Len came up to me and gave me Dr. Nemeh’s business card and told me to call for an appointment and that he would cover the cost. Before I was able to call Dr. Nemeh’s office - they called me. The office told me their first available appointment was February 26 - the same date, February 26 in 2006 when our church had the Healing Service with Dr. Nemeh.

Len and his wife, continued to support several visits with Dr. Nemeh that year, at a time when we needed hope and wouldn’t have been able to afford the visits ourselves. We saw some small improvements in Kevin’s foot, for instance bones that were protruding on top of his foot were gone. And Kevin also began making verbal sounds. 

During my time with our Christ Life group, Len’s wife happened to mention a book called Jesus Calling by Sarah Young. I was like I think I have that book on my bookshelf. In fact, it was given to me by my friend Diane after my surgery. Diane is a nurse and had come to visit Kevin hours after he was born and she is the one that found him having seizures. These aren’t coincidences people! - I dusted off the prayer book and started reading the daily reflection every morning. Then for the first time since our college days Jon and I began praying together again. I loved being able to support my husband with prayer during a time when he was struggling. And God answered our prayers a short time later. Jon was offered a job from one of his clients as CEO of his company, they provide services to adults with disabilities. Running a company is new for Jon but he is excellent with finances and who better to support clients and families with disabilities than Kevin’s dad.

In September of this same year, (MaryBeth) we heard about a Healing Mass that just happened to fall on the date of my Dad’s Heart Anniversary - so we took it as a sign to make the effort to attend. I would like to share with you what I wrote afterwards. 

When people see Kevin it is obvious he needs a physical healing. On the outside it looks like something is wrong with him. A fellow special needs Mom recently shared that a child in the store stopped and asked her Mom “What’s wrong with him?” and the Mom of the “normal” child gave the simple but clear answer “Nothing.” This brings me to the very strong feeling I had during the Healing Mass that Kevin didn’t need to be there - he didn’t need a healing - he is already “fearfully and wonderfully made”. It was I who needed the healing and not the physical kind.

As a parent, I want the best for Kevin, and so I will continue to pray for a healing for Kevin as I continue to love and help Kevin develop to the best of his ability.

My healing is knowing that although Kevin may have the obvious physical disabilities that many of us feel need to be healed, it is comforting to know that the healing that many of us “normal” people need Kevin doesn’t need and may never need. His spirit is not disabled. His spirit is whole and bright and a beacon for us all. He brings so much joy and inspiration to my life, to our family, and to our community. His smile and laughter is a healing in itself. 

Just one week after this Healing Mass, our pastor, Father Jim, approached me about Kevin making his First Communion. A real milestone! This was one of the best days of my life.

To say that Kevin’s First Communion on Thanksgiving day was very special doesn’t even begin to describe this blessed day for Kevin and our family. We could feel the love of everyone that was with us at the Mass, everyone that was with us in spirit, and most of all the love of Jesus’ presence with Kevin and all of us. We are especially grateful to Father Jim for his compassion and understanding, and for making this day with all who participated and celebrated in the Mass so personable and memorable for us. Our out of town family was so impressed with our church family and how they embrace Kevin and make us feel loved and accepted as a full member of our church. Kevin has the title “special needs” meaning “different from what is usual” but our family and friends make him feel special as in “greater or better”. Kevin’s special needs require us to adapt our life and sometimes it feels as if we miss out on “normal” life experiences but the people of IHM show their love of Jesus by surrounding our family with so much love and support that “my cup runneth over”. It was overwhelming to see so many people who have been a part of Kevin’s journey over the last 11 years celebrate this day with us. God has always provided for our family by surrounding us with faith filled friends and family. 

Once, when we gave a talk at PreCana on Life Challenges a couple asked  if my faith in God was tested after Kevin was born. No, I never lost faith. Looking back I can see how it is stronger than before. But sometimes I forget what I know - I’m still learning and growing. Before Kevin was born, I remember spending a lot of time talking to God. When Kevin was born and during the early days of his program - we were totally surrounded by the love and faith of our family, friends, church, and community. It was really impossible to lose faith with so much love and support. And now looking at my faith journey I see a difference in my relationship with God. I trust him more and understand that He has a plan for us. And when I forget he reminds me gently through something I read or hear in a homily or from a friend.