What hurts the most.....

I don't think  there is a parent alive who would not agree that one  most painful experiences is to see their child hurt, and not be able to help them. When Matthew was born, he was airlifted to Arkansas Children's Hospital. It was where he needed to be, and there is no doubt in my mind that they saved his life. I would have liked to have stayed with him 24 hours a day, but at the time, it was nearly impossible. We could only see him certain times of the day, and I had family to take care of.  I stayed as often as I could. One time while I was there, Matthew had to go have some tests done, so I went with him. In the next room, I could hear a child calling for his mom. I still hear him to this day. "I want my mom! I want my dad! Anybody!" It broke my heart. There was no one there for him. I called Mike when I got back to the room and told him from that moment on, Matthew would never ever be at the hospital alone. He might not even be aware that I was there, I might not be able to help him, but he would never have to be there by himself.

As I mentioned before, the challenges Matthew faces today, are different from the ones he faced in the beginning. Fighting illnesses and infections is difficult, but they run their course and are done. The challenges he faces now are more difficult to handle.One of the hardest is that he cannot tell us when something is wrong. Whether it be a tummy ache, a headache or other ache or pain, or even just if he is having a bad day, he cannot tell me. It's frustrating for me....even more so for him.  We take for granted our ability to convey to others any discomfort we might have. "It's too hot." "It's too cold." "I'm hungry." "I'm sleepy." We are a bunch of whiners. Can you imagine not being able to express yourself?


Another challenge  he faces is what seems like a compulsion to hurt himself. Currently, it is by pinching himself. I realize that it does not sound bad, but believe me, it is. He has small, strong hands that are capable of producing horrible, tiny bruises. Not just one, but dozens. There are many times when he breaks the skin. This has been going on for nearly 10 years. Until  year ago, he would go through cycles where he would do it constantly for a month or so, then stop for months. For the last year, it hasn't stopped. We have talked to doctors who give scenarios as to what could be causing it. We have tried assorted medications. There has been little we have tried that has helped. At the moment, we have to keep restraints on his hands almost 24 hours a day, to prevent him from pinching himself. Just this morning, when I went in to get him ready for his bath, I found him on the floor in his room with one of the wraps off. He had done significant damage to the tops and bottoms of his thighs, as well as the upper portion of his left arm. I wanted to cry.

A very dear friend suggested some brilliant ideas for me to try with Matthew to see if  we can  break this cycle. I discussed these ideas  with his occupational therapist and we have decided to implement these ideas. His OT explained to me that when special needs children go through puberty, it can cause severe regression. He is almost  back to square one. I am excited to see what kind of progress he will make in the next few months.

It gets easier...

I am so encouraged by the positive comments I received. Thanks so much!

There are still so many things that I would like to share. It's hard to know where to start and how many details to give.

Having Matthew has certainly changed my life. I'm not complaining. Au contraire.....he  has enriched my life and I am a better person because of him. Some people see Matthew and they pity him. They feel sorry for him because they  see only his disabilities. Not me. He is a determined, strong willed child. He has consistently defied the odds. He has accomplished so much more than anyone expected.

In the confusing weeks that followed Matthew's birth, we were told so many devastating things. I think the worst was that more than likely, he wouldn't make it to age five. We were told we should put him in a nursing home because he would require too much care. All I wanted to do was take him home and love him for as long as I could. And that's what we did. I'm not saying it was easy. It's not. Life is not always easy, or fair for that matter. Everyone has challenges.

The challenges we have faced in raising our very special child have changed over the years. In the beginning, the biggest problem we faced was multiple pneumonias and other infections. He spent more of the first five years of his life in the hospital than he did at home. As he got older, the hospital visits grew less frequent, but other challenges arose. I'll go into more detail later on.

People often tell me that I am a special person or a wonderful mom. While I appreciate the compliments, I have to say, it makes me uncomfortable. I'm not special. I'm just a person. I am a parent, who,  like anyone else, does the best they can with what they've got.  I love Matthew, just as I love my other kids. In retrospect, I know I've made mistakes.  I realize I've probably missed out on some opportunities, and there are plenty of things I could have done differently. All I can do is learn from the mistakes and keep trying my best. Most importantly, I can keep on loving him, nurturing him, and encouraging him.

Be gentle...this is my first time =)

Well, what can I say? I decided to start a blog. It’s not  that I am naive enough to think that I have anything of great importance to say, only that perhaps some of the experience I have gained along the way may be of use to others. You see, I am the parent of  a special needs child. It seems there are so many of us out there, but it’s not always easy to find each other, or to open up and share. It has not been an easy journey, and I have learned a lot along the way. Laughter is my coping mechanism. =)

I guess I should start by giving everyone a little background information. Matthew was born in September 1993. It was a perfect pregnancy with no complications. They induced labor 4 days after his due date. Labor was easy, again, no complications.

Everyone had left to get some lunch, the doctor had said it would be a couple of hours. However, Matthew had other plans, and made his appearance while everyone was gone. I can still hear the silence in the room when he was born. The doctor said “cleft lip and palate.” I knew what that was but was still shocked. How could there be anything wrong with my baby? I calmly asked the doctor what he said, and he repeated “your son has a cleft lip and palate.” He tried to lighten things by saying a lot of people were born with them, even celebrities. Things started to get a little crazier in the room, I knew it was more than just the cleft. All I could think about was Mike coming back in the room and having to tell him. Sometime in the  few minutes after Matthew was born, Mike did come back, and honestly, I do not remember how I told him.

They took Matthew to the nursery and the news got worse. We were told there was something wrong with his eyes and with his ears, and that he was having trouble breathing.  They had contacted Arkansas Children’s Hospital and a helicopter was on the way. I had a few minor complications after delivery and was scheduled to have a tubal ligation the next day, so they were trying to get me ready, x-rays and lab work.  The doctor came in and asked me if I was sure I wanted to have my tubes tied, just in case.  Just in case….I knew what he meant. Just in case Matthew doesn’t make it. The helicopter was on the way and they were going to take me to x-ray and I still had not held my baby….I had not even seen him. My mom put her foot down and said “she isn’t going anywhere until she sees him.” So they brought him in to me in an incubator. I got to reach my hand in and stroke his back, then they took him away. The nurses in the nursery were so precious. They took pictures for me. They knew he might not make it, but I still had not accepted the thought.

The next morning, Mike, Cody and Mike’s mom left to go to  the NICU at ACH in Little Rock  for Matthew. My mom stayed with me while I had surgery. All day long, the news got worse: heart defect, hole in his brain, eyes and ears have problems. I felt helpless. It was several days later that Matthew was diagnosed with CHARGE Syndrome. According to  http://www.chargesyndrome.org/, “CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.”

CHARGE
C - colobomas of the eyes. A coloboma (also part of the rare Cat eye syndrome) is a hole in one of the structures of the eye, such as the iris, retina, choroid or optic disc. The hole is present from birth and can be caused when a gap called the choroid fissure between two structures in the eye, which is present early in development in the uterus, fails to close up completely before a child is born. The classical description in medical literature is of a key-hole shaped defect. A coloboma can occur in one or both eyes. Matthew has colobomas in both eyes. They affect not only his pupil  but also the choroid and optic disc.  He also has microphthalmos, or small eye.


H - heart defect. This can be any heart defect, from some very minor to something life threatening. Matthew was born with an Atrial Septal Defect, or ASD. Atrial septal defect (ASD) is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. Congenital means the defect is present at birth. These defects do not usually close on their own as some do, and we were told he would need surgery around age 2 or 3.

A - atresia of the choanae. Choanal atresia is a congenital disorder where the back of the nasal passage (choanachoanal atresia on the  left side.

R - retarded growth and development. This is kind of self explanatory.  Children with CHARGE do not grow or develop at the same rate as other children.

G - genital abnormalities. This also includes anything associated with urinary functions. Matthew was born with very small kidneys as well as vesicoureteral reflux. It basically means that his bladder caused urine to go back into his kidneys, which caused infections. His was not severe enough to require surgery to repair.

E - ear anomalies. Again, this can mean almost any kind of defect that affects the ears or hearing. Matthew has no hearing in his right ear. He has very little in his left ear. He has stenosis of the ear canal on the left side, meaning it is very narrow. He also has defects that affect his inner ear which cause balance problems.

Along with the defects listed that make up CHARGE Syndrome, Matthew also has facial palsy, and swallowing problems due to a cranial nerve abnormality. He has had a gastrostomy tube since he was 2 weeks old. 

It is kind of overwhelming trying to give all of this information at once. I have so many thoughts that I want to share, but it is not always easy for me to put my thoughts into words. Remembering has made me sad, and I prefer stay happy, so I am going to stop for today. I will try to post something every day and if anyone has questions, please do not hesitate to ask.





Laughter gives us distance.  It allows us to step back from an event, deal with it and then move on.  ~Bob Newhart