If you type 9/11 into Google you get link after link of sites telling you a horrific story or containing pictures of burning buildings and destruction. Well that is not what it is to me at all.

To me this date is one of sorrow but also of great joy, hope, and love. It is a day to celebrate. It is the day my 3rd child, Jeffrey, was born. This day was in 1990, 11 years earlier than the infamous 9/11.

You may wonder why I say it was a day of sorrow. That is because even though I was full of joy to have him, he was born with a birth defect called spina bifida. I had never heard of it before my son was born and you may be asking the very question I did when they told me that is what my son had. What is spina bifida?

Simply put, although there is nothing simple about this birth defect, it means split spine. It is the failure of the spine to close and happens early in the pregnancy. It is the most common, permanently disabling birth defect in the United States. To learn more about it and the myriad of medical problems that come with it please visit the Spina Bifida Association.

When I asked that question I had just gotten out of surgery, I had Jeffrey by cesarean section, and was being informed that they were taking my baby and sending him to a different hospital. They told me where I was, wasn’t equipped to handle this so they were sending him to Children’s Memorial Hospital in Chicago. Although that wasn’t very far away it might as well have been across the country.

I was told they would bring him to see me before he left and that is what they did. They wheeled this sort of incubator thing into the recovery room and let me stick my hand through a little hole in the side to touch my baby.  Then they took him away and I was not to see him again for 5 days. They gave me a pamphlet about spina bifida and the worst case scenarios and left me to read all about it.

To say I was distraught is an understatement. I was put in a room with another woman who chose to keep her baby in the room with her 24/7. I got to listen to her coo and talk to her baby while I read about the horrible things my baby may have to endure.

He would need surgery and most likely would be paralyzed. Children born with this are living longer, possibly into adulthood but the main cause of death is kidney failure etc. etc.

I don’t even know that I understood a single word of what I read over and over again. I just wanted to hold my baby. I cried that he was all alone too and no one was there to hold him.

Hour after hour, day after day I was stuck in the hospital, recovering from surgery and beside myself with the anguish of not knowing what was happening to my child. I would call the other hospital and have to wait for a nurse to call me back only to get conflicting stories about what tests he had or what was going on. I would beg the nurses to hold him for me and tell him I loved him.

One day a doctor that was in charge of his case came to see me. He was a neurosurgeon and very busy. He briefly told me what my son had and that he would need surgery and then had to leave. Even if he would have spent hours explaining I would not have understood. I was so consumed with grief my brain could not comprehend what was happening.

There is a story written by Emily Perl Kingsley called Welcome to Holland that does a pretty good job of explaining what it is like having a child with a disability but unless you go through it you really don’t know what it feels like.

Anyway, the day would finally come that the powers that be were going to return my son to me. He was supposed to arrive some time in the morning but problem after problem occurred and they did not get him back to my hospital until 11:00 pm. That is when I finally got to hold my son Jeffrey and hold him I did. My eyes filled with tears of joy to see my precious baby and be able to kiss his little cheeks. I didn’t want to put him down but he needed to be kept in a special nursery.

The next day we were finally able to leave the hospital and go home to my daughters that I missed so much. That is when the journey really began.

There was so much to learn and so much to endure for me, my son and my family. There were surgeries, 15 thus far, that he had to go through. There were medical procedures I had to learn to care for him. Fluids to measure and record. Therapies and specialist visits.

My daughters had to go without my attention, miss lots of school, and sit for hours in hospitals and doctor’s offices. The medical bills just about destroyed us and I had to learn to navigate my way through state help funds and medical insurance claims.

Jeffrey, through it all was a happy kid. He had the cutest smile I ever saw.

 

I can’t tell you how happy I was when he started to walk, something I  and the doctors  didn’t know he would be able to do.

There was a lot the doctors didn’t know. It turned out that Jeffrey had some rare form of spina bifida called lipo myelomeningocele. In some circles it’s not even considered spina bifida but the disabling factors are all the same. So every day it was a guessing game. Would he? Could he? I don’t know.

Jeffrey didn’t know either. He didn’t know he couldn’t do some things so he found ways to do them anyway. I was always amazed at his “never give up” attitude. He adjusted to everything.

Even school. I will never forget the heartbreak I felt as I watched him on the playground one day. By this time Jeffrey needed a brace on his left leg to walk. There was a lot of nerve damage caused by the spina bifida that effected his left side. He could walk and even run a little but it was difficult.

As I watched there was a group of boys that decided to play and they all started running after a ball. Jeffrey started running too but soon was left in the dust and just wandered off to be by himself. I believe that is when he started to realize he wasn’t like other kids. He adjusted though and found other things he liked that didn’t require athleticism.

As he grew his leg didn’t and although the doctors tried everything they could there came a time that he couldn’t walk anymore. The braces weren’t working and he was on crutches for 3 years when his specialist recommended amputating his left leg. He believed that with a prosthetic leg Jeff could walk again.

Jeff was 12 now and I could not make this decision. I told the doctor, who was angry with me, that I was leaving it up to my son. I told my son I would support any decision he made. It took him 8 months until he came to me and said he wanted to do it. I almost died. He was 13 years old.

I cried when he was able to walk down the aisle at his 8th grade graduation and get his diploma. I smiled when he walked down the aisle to get his high school diploma.

He is now 23 years old. He has many challenges in his life but faces them all. He is an amazing person who has taught me strength, acceptance and a greater love than I have ever known. He has shown me perseverance and that anything can be overcome. He held me through my darkest moments during my divorce and has been (one of 4)  of the greatest blessings in my life.

So this day, 9/11, every year is a day to celebrate. I celebrate my son Jeffrey and give thanks that he was brought into my life. Happy Birthday Jeffrey. I Love You.