Twenty-six years ago today, God gave us the most beautiful gift we could ever receive: our son Ben. It's been quite a journey, as most of you know <3 as you have traveled right along with us. I want to share with you something I wrote when he was eleven years old. (It's long - sorry) It's about the Miracle God gave us when Ben was just ten months old. All of it is true, and we thank our Lord everyday for this incredible gift.

God's Miracle
by Ben's Mom
Written when he was eleven years old.

I know the Lord sometimes allows sudden, terrible losses to many families. However, for our family, our loss came slowly, as God measured out each new difficulty for our son, Benjamin, a little at a time. With each new obstacle I have learned to trust God more, and my faith in Him has grown stronger.

Anticipation
Twelve years ago my husband Willie and I learned we were finally going to have a baby. We were so elated! We had just had a miscarriage three months earlier, and I was also still in grief for my dear sister who had died of cancer just one year earlier. Now, we hoped, it was time for our grieving to be over and for something happy in our lives! For me, this would be my only child with Willie, who would be a mature Christian father. For my husband Willie, who had become a wonderful stepfather to my two older children, this would be his first baby.
It was our big chance to make different mistakes than we had made with our two teens, Jake and Lana. We would all have a child to love. We were thrilled and didn't care what kind of baby the Lord would give us. Whether this baby was an Emily or a Benjamin, it made no difference to us ... as long as "it" was healthy.
I was a teacher of third grade children at the time, and my students were excited for me and shared in the pregnancy as only children can. They asked all kinds of questions. As I read aloud to them each day, they gathered around me, placing their eager hands on my tummy, giggling with each hiccup the baby made! They seemed to love this special sharing time as much as I. Since I had taught many difficult children over the years, I remember praying more than anything for a baby with a good attitude.
Each day passed by so slowly as we all waited. Allana, then fourteen, helped design, paint, and decorate our nursery with lots of bright, happy clowns. We arranged and rearranged the room as we waited those long months. Even eighteen-year-old Jake took interest in the baby-to-come. We all dreamed of such a perfect little baby and how we would shower our baby with love. We had no idea how much all our lives would change and how difficult little Benjamin's life could possibly be, until he finally arrived.
The pregnancy itself was easy and uneventful. There was no reason for any elaborate tests, and we all wanted the baby's sex to be a surprise. Although I was thirty-eight, we felt we could easily accept a baby with Down syndrome, and refused amniocentesis. We didn't even have any reason we knew of for an ultrasound. My last day of teaching came and I went home, ready to wait the three remaining days till our baby's due date.

It's Time
Labor began the very next morning. We made the trip quickly to our little mountain hospital forty long miles away. Labor progressed quickly for me, but our baby was in distress. A fetal monitor showed the heartbeat slowing dangerously with each contraction. The too-short cord had to be cut before he could be born, and although he didn't turn blue, he still could not breathe on his own for the first few minutes. The placenta was half-sized, and the doctor could tell immediately there were genetic problems. The baby's ears were too low, and although he was full-term, he weighed only five pounds and five ounces. He was too "floppy."
After what seemed like an eternity we finally got to hold our newborn son. He was so cute. So tiny. Our little Benjamin was a considered a "full-term preemie," who could not nurse or even suck. We learned then he would have to be flown eighty miles from our little mountain hospital to The Children's Hospital in Denver. The Children's Lifesaver's Team was called and plans were made. Willie would be able to go with our new son, but I would have to stay behind.
Friends from our church came to the hospital as soon as we called. They prayed with us and took Allana home with them, leaving me alone till morning. I was the only patient in the little hospital that night.

Ben's First Flight
I couldn't believe all that was happening as I heard that little airplane fly over the quiet hospital. The reality of my husband and brand new baby being in that plane nearly overwhelmed me. I tried bravely to suppress my many memories of small aircraft crashes over the snow-covered mountains of Colorado. Desperately praying from my hospital bed for their safe arrival, I reached for my tummy as I had for so many months before to lovingly pat our baby. I have never felt so hollow. I couldn't even talk to my unborn baby anymore. But, I wouldn't let myself cry. This was not the delivery I had expected.
Finally, after only some fitful sleep, morning rose and some dear friends came and drove me the hundred miles down to Denver and to my family. It felt so wonderful to be reunited with my new baby and husband.

Children's Hospital Level 2 Nursery
At Children's Hospital we learned together how to feed a baby who could not suck. Breastfeeding was out of the question for the time, so I began pumping every three hours and feeding him my own milk out of preemie bottles. (This was not how I had imagined my first experience at nursing.)
At last, after five days in intensive care, and more intrusive tests than we could ever imagine being made on a baby; Benjamin was stabile enough to go home! We knew he was going to have problems, but we felt confident we could handle it. We just didn't have any idea how very difficult this would be.

Home at Last
We happily began the great task of keeping our adorable Ben alive by feeding him every two hours around the clock. Each feeding took about fifty minutes and would exhaust him. Yet Baby Ben did not sleep much at all. We all took turns. Willie became quite a pro and Jake learned to change him. Allana happily volunteered to help out when we were just too exhausted to stay awake any longer. About the only time he would sleep was when she put him in the Snuggly and ran the vacuum. This little gift from God was so good for our family. We loved him, prayed with him, rocked and sang, "Jesus Loves Me" to him. This tiny baby, who was considered to be "failure to thrive”, actually began to gain a little weight!
After three months, the Lord provided a wonderful, Christian baby sitter for our little boy. Reluctantly I returned to my third grade class as we had planned. But, somehow, I felt like I was leaving a newborn instead of a baby who was well settled into a routine, as we had hoped for earlier. He was not ready and I probably knew it down deep. I should have followed my intuition.

Discovery
Just a few days after I returned, Benjamin nearly died while with the sitter! His eyes rolled back and he could not respond to anything she did. Willie and she rushed him to the doctor. I was called out of my class and raced to the meet them there.
Our local family doctor, the same who had delivered Ben, made a spinal tap and other tests and sent those with him back to Children's again. The specialists were amazed at all the lab work that came with Ben. They couldn't believe that a rural, family doctor would, and could, do such thorough testing. We already knew our Lord had blessed us with a skilled family doctor.
Many more tests were made at the hospital this time. We held our baby; trying to comfort him as his little body was intruded upon in ways we would have never dreamed. He was stuck with needles, glued, hooked up to EKGs, EEGs, given barium to swallow, x-rayed, sedated, and CT-scanned. The world of existing in a children's hospital, which had been so totally foreign to us before, was now becoming a regular part of our lives.
While we were most concerned that our little Benjamin would die, the specialists were looking for serious genetic defects. We found out about many more deformities including that his swallowing was wrong; his breathing was stressed; his vocal cords were collapsing, he had reflux, and his kidneys were malformed. Then, we finally found out from a CT scan that his major problem was he probably didn't have a corpus callosum, the major part of the brain that interconnects the two hemispheres. We were actually relieved. We thought that it would certainly be much easier to live with a child with special-needs than it would be to lose him. For this new diagnosis the Lord gave us a quick, calm acceptance. It would be the beginning of many.

Adjustments
With all this testing came some help. The specialists were able to send us home with some new suggestions for feeding Ben. We found that by adding something as simple as baby rice cereal to his formula, feedings took only thirty minutes! Life became a lot easier. Finally, we settled into a more reasonable routine. Benjamin actually began to make progress. Realizing the extra care he would need, we gave up on my returning to school for the rest of that school year.
With help from a very patient occupational therapist we learned how to position Benjamin to help him grow stronger to hold up his head. She helped us make a special seat to strap him into his high chair. I know it may sound funny, but it was nice to get to use something "typical" children used, even with a little adaptation.
We discovered the sweet personality God had given our little son. Benjamin learned to recognize his family and even learned to laugh! We delighted in each new skill he acquired and thanked God for allowing us to keep him. We were so much in love with this adorable little guy.
We knew Ben had problems, but we realized God was giving us the strength we needed. He answered our prayers for help by sending us some very special people. He provided caring doctors, skillful therapists, and wise, encouraging friends to listen and help us pray. When these dear friends asked how they could help, I sent them on missions to find us success stories. I needed, more than anything at that time, to hear of other children with disabilities who were progressing - actually living somewhat normal lives.
When friends gave us breaks away from Ben we knew he was truly in loving hands. It looked like for a while that our life with Ben might have some future. We knew that although Ben's progress was slow, he was developing and everyone who knew him rejoiced with us in each new skill. We began to have confidence that we could raise this child.

Changes
Fall came and it was time for me to return to school. We just could not get along without my financial contribution to our family. The family health insurance, which included Ben, was through my job. I was able to transfer to our own little mountain school just five minutes from home, to teach fourth grade! Willie was able to work out his schedule with mine so that we only needed a sitter two days per week!
Amazingly, the Lord provided a wonderful, Christian woman, a retired nurse, to take care of Ben when neither Willie nor I could be there with him. Martha actually came to our home and loved Ben as much as any grandmother. The Lord was providing for our needs even beyond what we could have ever dreamed!
Then, just when life seemed to be going so smoothly, the worst of all our fears struck. Our precious Benjamin began to change. Gradually, Ben started losing all the skills we had all worked so hard for him to learn. He could no longer hold his head up. He didn't make eye contact. Our Benjamin had lost his precious smile. His sweet personality was gone completely, and he just stared into space.

Seizures
On October 21, while I was spoon-feeding him, Ben had a sudden jack-knife move where one side of his body drew up tightly for just about three seconds. His body relaxed and he cried a pitiful cry. Then he repeated this same cycle again. And again. This happened about five times in a row. I cannot begin to explain how shock spread throughout my body like electricity. I went numb. A mother knows when something is wrong and my body was in full alarm mode.

He had started having what we didn't realize at the time as a very devastating kind of Epilepsy. Again we found ourselves back at Children's Hospital for many more tests. The diagnosis was Infantile Spasms, a grave form of epilepsy, which showed a totally non-functioning brain wave pattern on the EEG. A Magnetic Resonance Image showed even more malformations in the back of his brain where vision is processed, and that his corpus callosum had indeed never formed at all. We had no idea what all this could indicate for his future. The doctor told us he might not ever walk or talk. We began to question: Would he also be blind? Would he ever recognize us as he had before? Would he ever smile again?
Willie and I sat in his hospital room and held our baby and cried together. We couldn't even find a way to pray. We were a hundred miles away from our friends and church - a thousand miles away from family. We called an elderly pastor friend in Denver to come. He helped us do what we couldn't alone. He prayed while we wept.

Ben's little body was still alive, but all of his personality, who he was, was gone. The outlook for his future was bleak. We wondered how we would be able to raise a child with such severe disabilities. How did parents do it? Would we have to leave our jobs; sell our home; move to the city? We had never been around any adults or children with disabilities before. Now the Lord had given us this child who needed so much. How could we do it? We were in shock. Our confidence was gone - we had nothing to give this child.
We asked the pastor to give us a verse from the Bible for strength. I wasn’t a very good listener and as he was reading, my thoughts ran away with me.
He read to us from Philippians 4: 4-6. "Rejoice in the Lord always, I will say it again: Rejoice." I remember my heart was pounding in my ears, as I couldn't understand how I could rejoice about losing my baby.
Then verse 4:6 said, "Do not be anxious about anything." Weeping quietly, I asked myself how I could not be anxious about my baby. Then his next words made me question why he had selected this passage. Surely he didn't really understand how it felt to lose a child in this way.
I wanted so much for him to offer some encouragement, and he seemed to have missed the whole idea of what kind of verse we needed. I couldn't believe that this pastor was expecting us to rejoice about losing our baby and not be anxious. "Well," I thought, "for now that was simply out of the question. I'll just forget that part now." You see, I was already busily worrying about the most traumatic event of my life, a grave prognosis for our precious tiny son. For then I was intent on not rejoicing and definitely being anxious about my little baby. Ben certainly deserved lots of worry, I reasoned.
But then the pastor got to the seventh verse. "And the Peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
This was finally something I could grasp even through my grief, shock, despair and resistance. This actually flickered in my mind as something I could use and something that made sense.
So... God would guard my heart and my mind. I did not have to understand. I didn't have to understand. So that was how God was going to keep me from worrying. The rejoicing part would just have to come later. I was not ready for that yet, and surely the Lord would understand. I had heard that our Lord is able give us the time we need to learn to trust Him.

Starting Over
The neurologist told us there were many medications to try. He made no promises, nor would he make a prognosis for Ben's uncertain future. Ben was started on one of the medications and we took him home, without a clue what the future might hold for our little boy. Even at this time we didn't know how debilitating these seizures could be.
Now, as I reflect on that visit to the hospital, I feel badly about how I reacted to a truly undeserving resident doctor who had observed all the tests, procedures, seizures and the way we had responded. She used a wheelchair herself, but when she graciously attempted to help me talk about the diagnosis and how we were feeling about it, I was actually quite rude to her. I just shut her off. Inside, I was really frustrated, even angry, at her attempts. I couldn't believe how insensitive she was, even though all she did was try to help. Under it all I think I knew it was safer to be mad at her than to anyone else - least of all, God.
Ben's seizures came in clusters of about ten in a row, one minute apart, and he had as many as five clusters each day. He cried out with each one. We suffered with him as we held him and prayed. We watched as he eventually regressed to a newborn developmental level.
Even with Ben so ill, I still had a class of children at school. It was so difficult to leave him each morning to go. As I stood outside at recess, I would look up toward our home and know that Ben was in good hands, either with his own Daddy or with Martha. I would watch the little first grade boys run and play, wrestling - like puppies. They were so adorable and so normal. I ached to know if Ben would ever run and play, and giggle with friends like they did. I frequently shared with my students about Ben. It was truly amazing how they tuned in to him whenever they saw him. Perhaps the Lord was using me to help them be better people or parents in the future.

God's Gift
Willie's mother, and Ben's elderly Grandma Grace was quite ill in Maryland, so we made special arrangements to fly with Ben to visit her. When we got there she was suffering much more than we realized, and it made the traveling with Ben worth the extra effort. Her legs were painfully swollen, and she was in misery, yet she was ecstatic to see and hold her little grandson. She prayed with us for him.
While we were visiting her, Benjamin's seizures began to decline. Then, one day he didn't have any! He still was not making eye contact, and certainly could not smile, but this was so encouraging!
The morning we were leaving, I sat on the floor, and treating and bandaging Grace's infected, swollen legs. I tried to hide how badly I felt for her. I was so moved by her unbelievable, positive attitude, even while she was in so much obvious pain, I just simply and silently prayed, "Dear Lord, if you would just take away her suffering, I will quit selfishly asking for my son." And, when I closed my eyes to pray I saw that brown colored painting of Jesus, with the clouds in the sky where you are looking up at Jesus on the cross, where the light is shining on His face.
I truly think that perhaps, for only a fraction of a second, I really believed I could actually give that up - to quit asking for our little Benjamin.

Home Again
Sadly, we left her and flew back home. When we finally arrived home eight hours later, we put Ben down on the carpet in his carseat. He looked up, right into our eyes and smiled! His eyes were crystal clear. It was as if he had just come right out of a coma! I grabbed the camera and snapped his next smile.
We were all so ecstatic and tears of joy were flowing from all of us. We called his Grandma Grace and told her the good news too. Our Ben was back! Our Lord had given him back to us! There was no doubt. There is no way to explain the joy we experienced at that time! Pure Joy, extreme Jubilation, maybe? The words to "Our God is an Awesome God" kept going through my mind for about a year!

The next day we received a phone call telling us that Grace had passed away. She was home with the Lord and not in pain any longer. Our Lord had taken her from us, but He had given our son back to us. Surely she, too, was rejoicing with us in Heaven. We believe this to this day. The Lord had answered our prayers, but only in His way.

The Lord gave us this most precious miracle.

Our Miracle
When we informed the neurologist of Ben's condition, he was skeptical that it would last. He asked to make another EEG in two months - only if Ben still appeared seizure-free.
After the test was made, the neurologist met with us and said, "If I had not known this child had ever had infantile spasms, there is no way I could tell from this EEG. He has a completely normal brain wave pattern!"
This was absolutely unheard of in the whole neurology department. Children who have Infantile Spasms do not get over them. We had real clinical proof of our miracle!

Living and Learning

Along with the many problems, come the gifts Ben has been given. The Lord gave Ben an amazing memory and a true gift of music! It is a real blessing to hear him sing over a thousand songs, especially, "Amazing Grace."

In many ways Ben is a very typical little boy. He is friendly and curious. He loves music, tapes and his tape player, other children, babies, Raffi, Sesame Street, and Arthur!

Ben sat up at fourteen months, crawled at seventeen months and began walking at age two-and-a-half years! He did it later than typical children, but he did it!

At eleven years old he speaks over a thousand words, and uses short sentences, some of which other people can really understand! He can see and loves to "read" catalogs. He memorizes kids books. He is beginning to enjoy real people food and can eat mashed potatoes with a spoon all by himself.

Ben is a part of a regular class, and has wonderful classmates who are all his friends! They truly accept him as the individual he is. He doesn't actually run yet, but he does ride horses and is beginning to ski - in special therapeutic programs. He held a rope and jumped, about one jump to everyone else's four, during Jump Rope for Heart. He was beaming!

Through the years we have had many positive experiences that without Ben's special needs, we would have missed altogether. We have grown to appreciate our community more and more. People take an interest in Ben, and have grown to love him too.

Our whole family goes to a special therapy camp (Adam's Camp) for two, weeklong sessions each summer that highlights our whole year! Ben has many very special friends he has met at camp! For us, getting to know other parents of children with special needs has been one of the best blessings of all. There is an almost instant bonding with these special people. We see so many other children who must struggle even more than Ben does, and we are always thankful for his progress. We will never take his miracle for granted.

The road hasn't been easy, of course. Ben has had many corrective surgeries. There have been setbacks. Sometimes it seems Ben takes two steps forward and one step backward in his progress. We find ourselves back at the hospital frequently, we've lost track how many times we have had him there for surgeries, tests, and procedures. Out of necessity we have become his medical interpreters and managers, always questioning and searching for additional ways to help him grow and progress. God has helped us find ways to get his therapy needs met in our rural environment. Therapy has become a daily part of our lives. We have educated ourselves on every aspect of his life.

Blessings

As a mother of a special child, I have learned incredible life lessons during our eleven years with Ben. I wish I could say I have reached total acceptance of having a child who has so many needs and disabilities. Some days I handle it well, while others I have to struggle. Sometimes when I see other typical children his age I grieve for the childhood I wish he could have.

I have changed in many ways. I have learned to ask other people for help, and to not feel guilty when I get upset over unknowing people's hurtful comments. I also try to remember that just because what I am going through may seem heavier to me than someone else's burden, it doesn't make their own burdens any easier for them to carry. I hope I am not as quick to judge other people and how they raise their children as I used to be.

Most importantly, I have learned that God has never given me any more at one time than I could handle with His help. Our Lord has the time to wait for me to learn to trust Him.

************
AND NOW

Ben is now twenty-six years old. He has not had a seizure since that day and has been off all seizure medication since he was two years old.

It has been a Long and Winding Road for Ben and at this time He has an incredible memory and a song in his heart. He amazes us every day with all he knows and understands about life. He not only walks and talks, but he loves to sing and perform. He brings joy to everyone who knows him. He remembers people from when he was about four years old - and what he did with them!

We found out that most of Ben's abnormalities are all part of two rare genetic conditions called FG Syndrome and Koolin de-Vries Syndrome. We have learned Ben is missing just two genes on the long arm of chromosome 17 and we have a long list of anomalies. Every system of his body is effected.
The agenesis of the corpus callosum causes some unique learning problems. Although Ben is not autistic, many of his behaviors resemble that of a child who has true autism. Sometimes he "gets stuck" on a word or phrase for days, even weeks. Sometimes he is very fearful of change or noises. Anxiety is an enormous challenge.

There aren't many children in the world who are like Ben - but he's not the only one, and somehow that's comforting. There are other families who are going through the same challenges, fears, hopes and dreams who have given us incredible encouragement. These families will be lifelong friends who understand on the deepest level.

The reality is there is more right with Ben than wrong, and he leads a happy life.

Ben has never said an unkind word to anyone in his entire life.

We have learned more about love and what is important in life from knowing Ben than we have from any other person.

The Lord has not taken away all of Ben's challenges, but God's miracle has continued. Ben's life is such a testimony to the Lord. God truly blessed us when He gave us Ben.

The Lord has continued to send people to help us to pray, to listen, and to help with his therapy and care.

God sent us a wonderful family, caring doctors, therapists, teachers, friends, and a supportive community.

Our God has provided beautifully for Ben's every need, often before we even recognized he would have that need.

But most of all, God sent us a special person whose heart is full of His love. He really does have a wonderful attitude! I have learned that to love a child like
Ben is to really learn what love is all about.

What a Gift!
Happy Birthday, Ben!