The last couple of weeks have been a little crazy with Matthew.....full of good days and bad. Matthew has had some tummy troubles and with that, he gets frustrated and hurts himself. Last Wednesday, he bit his arm 3 times and left a huge knot under the skin. I was not too terribly concerned with the bite because it did not break the skin......but he rubbed the spot during the night and took off the top layer of skin. It looked just awful by morning and I had to bandage it. I had to give him a little of his meds Thursday night to calm him down and he slept almost 48 hours. It worried me that he slept that long. His meds do sedate him, but generally not over 16 hours. Ended up taking him to the doctor yesterday to have him take a look at the bite and discuss his meds. He said the bite looked  good and to keep doing what I was doing for it, but went ahead and prescribed an antibiotic just in case. He also talked to me about a different med, hydroxine, which is used to treat a variety of ailments, from allergic reactions and nausea, to insomnia and anxiety. It is a relatively inexpensive drug with few side effects and I am hopeful that it will help Matthew. We shall see.

It was funny to me, that before his appointment yesterday afternoon, Matthew looked all pitiful and sad. He just laid around and did nothing. The minute we walked into the doctor's office...boom! Mr. Happy Pants.  But it was a relief to see him feeling better.

I am still hopeful that by writing this blog, it might somehow help others who are dealing with a child with special needs. If any of you know of anyone, please pass along the information. It would have been a great help to me early on to be able to talk to someone about the challenges I have  faced along the way. Perhaps this journey I am on will serve to help someone else. Please feel free to share this post on your facebook walls.....who knows, someone you know might know someone else that could benefit.


*Do not pray for easy lives.....pray to be stronger men!*

giggles......

We had a couple of really difficult weeks. At times, it seemed like Matthew would never be his 'normal' self again. He was completely miserable. He cried a lot and stayed up nights, which meant less sleep for me. He slept during the day at school. During this time, it wasn't pinching himself that was the problem. This time, he rubbed his legs repeatedly, until it broke the skin. The tops of his legs from his knees to his hips were a mess. We had to apply bandages daily and tried our best to keep him from rubbing his legs and making it worse.

I am happy to say he is better now. Much, much better! My sweet, little happy boy is back.Starting this past weekend, he has laughed and laughed and laughed God only knows what he is thinking, but the sound of his giggles brings a smile to my face. It is a contagious kind of laugh that you cannot resist. He gets so silly with it. It is so much fun to watch. I wish I had a sound clip or video of it to share, I will try to get one.


"Laughter which cannot be suppressed is catching. Sooner or later it washes away our defenses, and undermines our dignity, and we join in it -- ashamed of our weakness, and embittered against the cause of its exposure, but no matter, we have to join in, there is no help for it." Mark Twain


Times like these, when the  house is filled with laughter, makes all the more difficult times worthwhile. It's all part of this wonderful journey.

isn't it funny....

It's kind of funny how things work out. The last post I made had some repercussions. Let me explain. When I said the things I said in my last post, it hurt my husband's feelings and he was upset with me. It honestly was not my intention to try and make him feel bad. I do not think he is a bad guy, and he is certainly not a bad father. I was only trying to share my frustrations. I feel that the things that I go through, that we go through as parents of a special needs child need to be on here so that others know they are not alone in the way they feel. Some of the things I share might be hard to read, hard to understand, and for some, hard to hear, but I will keep posting the things that I feel might make a difference in another parent's life.

Now for the funny part....and I do not mean funny ha-ha, I mean funny as in ironic. Every morning before he leaves for work, Mike watches Mike & Mike on ESPN. When he leaves for work, he listens to the rest of it in his truck. I was at home when he left this morning, and instead of switching the television over the HGTV as I usually do, I left it on ESPN as I did a few chores. After a little while, something caught my attention. It was Jim Kelly talking about his wife's new book, Without A Word. He and his wife had a son named Hunter, who was diagnosed with Globoid-Cell Leukodystrophy, or Krabbe disease. It is a fatal degenerative disorder. He spoke briefly about how having a special needs child can affect a marriage, and about how communication is important. You can listen to what he had to say here:  Jim Kelly on Mike & Mike ESPN   (the part I am talking about is about 8 minutes into it) I cried as I listened....what he said really hit home with me....it touched on what I have been feeling, and with what I was trying to express in my last post.  Within minutes, Mike sent me a text. A simple text that said he still loved me, but it spoke volumes.He had been listening, and had actually heard what Jim Kelly was saying. The lines of communications were opened and walls came down. It does not always take a long, drawn out conversation to make a point. A very wise friend of mine asked me, after reading my last post if I had ever directly asked Mike for help. I wanted to say that I should not have to ask, but honestly, I got the point.....How can I expect him to help me when I am not expressing to him exactly what I need help with? My friend also pointed out that men and women are different, and as such, think and  interpret things differently. Maybe my not asking for help meant to him that I did not need help. It is logical and makes more sense to me now. Communication is a two way street.

Mike brought  home a copy of Jill Kelly's book for me. It is a great book, but very hard for me to read. I look forward to finishing it.

Little things mean so much.

Writing a blog is so much harder than I ever imagined. There are so many things I want to share, and not all of them are easy to talk about. From the very beginning, probably as soon as Matthew was born, communication between my husband and myself has been difficult. It seems like things that should have brought us closer pushed us away from each other. It should have been easy for us to be vulnerable with one another...to be able to talk to the one other person on the planet that would understand how the other felt....it wasn't. It still isn't. I don't blame him, and I hope he doesn't blame me....it is just very difficult for us. I think part of it is our own self pride, the rest is just not knowing what to say.

Other than when Matthew is at school, 99.9% of his care falls on me. I don't mind it, but having some help would be nice. Not having to ask for it, would be even better. It's been 17 years and I have to admit, I have resentment. I get so overwhelmed at times. When Cody and Alyson were home, it was great. They both helped me so much. Cody was a fantastic helper. I realize that I am the mom here and for the most part, society expects the mom take care of the maternal things....diapers, baths, etc. Which is fine. I have no complaints with the idea, but for how long? For most families, after the age of 2, the care is not so involved. The older the child gets, the easier it gets. It is not the same for the families and parents of special needs or critically ill children. I guess maybe I should come right out and say "hey, I could use a little help here". It's not that the care is hard. It isn't....but my inner voice tells me that I should not have to do this alone. Maybe he wants to help, but isn't sure how. That is why communication is so important.

It is for things like this that I hope this blog helps. Being able to vent is a very good stress reliever.  Keeping your emotions bottled up does not help. So if you have friends or family members that are in a similar situation, I recommend listening to them....letting them vent. It isn't always easy. To me, it would be easier to talk to someone outside my family circle about things like this, but that is just me. We all have different needs. For parents, I suggest you try your hardest to keep the lines of communication open. If you find you can't talk to each other face to face, try writing your thoughts down. Once a wall has been built, it is so hard to overcome it and resentments and frustrations can grow. 

Happy birthday, Monkey Man =)

Wow! So many things to say and no idea just where to start. I want so badly to be able to effectively convey  these thoughts that are in my head. It's not always easy. I guess I should start today by saying, "HAPPY 17th BIRTHDAY, MATTHEW!"  It has been a long and interesting journey, and I would not have missed it for the world. First steps we were told would never happen....first words we never dreamed would come....the laughs the smiles.....the tears....the years.

All of the difficult times, make the good times that much sweeter. It is refreshing to stop and enjoy the simplistic pleasures along the way. With special needs children, you want so much for them, but your expectations are lowered and you learn to savor the silliest things. Little things mean so much. I cannot give Matthew words of wisdom or advice on girls. I cannot help him study or teach him to drive. However, no first dates means no broken heart to mend and no driving means not worrying about him while he is out.....no bad grades means no disappointments.  The memories and milestones we have missed out on with Matthew have been replaced with other ones. You live, you learn, you accept, you deal with it. After all, it's all about the journey.

I spent the first year of his life trying so hard to form a bond with him. This tiny little boy who was so distant. He preferred to be in his own little world. I held him tight as he cried, wanting so much to make that connection.Wanting to see him look up and smile at me in that adorable little smile that babies do. It didn't happen...at least not in the first year. We spent most of the first year in the hospital. My heart broke to see what he had to go through.....IV's, needles, x-rays, tests. It was not easy....not by a long shot. I know more about breathing treatments and respiratory infections than I ever wanted to know. I can convert kilograms to pounds with ease. I saw things there that no one should have to see, let alone live through.  The first year was definitely the hardest. It tested my faith, it tested my strength, it tested my heart. However,  it made me strong and I am better because of it. I have profound appreciation and respect for not only these precious kids, but also the people in their lives that care for them.  

It's been 17 years and I have seen him smile. I have heard his laugh echo through the house. I have seen him walk and make his own way. I have seen him succeed....to thrive. This precious child of mine has taught me so much.

If there are any words of advice that I could offer to any parent, it is this......love your kids. Show them you love them. Embrace their individuality and uniqueness. Praise all of their accomplishments, no matter how small they may seem. Hug them. Tell them you love them every day. Teach them to have compassion and respect for others. 

Here is a poem someone gave me right after Matthew was born. I wanted to share it.

The Special Mother
by Erma Bombeck 

Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation.   As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter.   The Patron saint will be Cecelia"
"This one gets twins.   The Patron saint will be Matthew"
"This one gets a son.   The Patron saint.....give her Gerard.   He's used to profanity"
Finally He passes a name to an angel and smiles.  "Give her a disabled child".
The angel is curious.  "Why this one God? She's so happy"
"Exactly," smiles God.  "Could I give a disabled child to a mother who does not know laughter?  That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair.   Once the shock and resentment wears off, she'll handle it.   I watched her today, she has that feeling of self and independence that is so necessary in a mother.   You see, the child I'm going to give her has his own world.   She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that.   This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods.  "If she can't separate herself from the child occasionally she won't survive.   Yes here is a woman whom I will bless with a child less than perfect.   She doesn't realize it yet, but she is to be envied.   She will never take for granted a 'spoken word'.   She will never consider any 'step' ordinary.   When her child says "Momma" for the first time she will be present at a miracle and will know it.   I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them.   She will never be alone.  I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.  
God smiles "A mirror will suffice"

Electroconvulsive therapy

I still do not think I am special. I am not a better parent than any of the rest of you. All I can do love him, and I do. It has been a privilege and an honor to care for this special gift.  This post has been the hardest to write. It was written through a veil of tears and with much sadness in my heart as I looked back. But the tears here at the end are tears of joys for  the accomplishments he has made and for the hope and expectations of those to come. Happy birthday, Matthew! Momma loves you =)

Hepatic ischemia

Hypovolemic shock

Toxic shock syndrome

Acute respiratory distress syndrome

Hypoglycemia

Lithotripsy

Shock

A good day =)

Sometimes I am just so thankful for a peaceful, uneventful day. Today was one. As I said before, it's not all bad. As I was getting Matthew ready for school this morning, I was thinking about some of the funny things we go through on almost a daily basis. I say funny, some might not agree. Kids are truly unique, and no matter how many you meet, none of them are the same. This is even more so with special needs kids. Perhaps the funniest situation we have to deal with is gas. There, I said it........yes, gas...and lots of it!

When Matthew was 2 weeks old, he had a surgical procedure called a nissen fundoplication to help combat his reflux problem. Basically, they take part of the upper stomach and wrap it around the lower part of the esophagus to prevent stomach contents from coming back up. Since having this done, he has been unable to burp. It has to go somewhere, and it does....often and with special effects! It's funny you never really think about this kind of thing with most kids. They think it's cute when they are little....it always gets a laugh. But as they grow older, you teach them not to do it in public, so it becomes less and less of an issue. Not with us. Matthew does it anytime, anyplace. It is definitely one of those 'its better to laugh than cry' moments.  I can remember on several occasions at church when it was very quiet during prayer....and boom! Matthew lets everyone know he is there! Mike and I usually look up at each other and laugh...knowing the sound of it is not  the worst part. Trips in the car can be bad because of this. Do you know how many times we have had to ride with the windows down in the middle of winter?  We are probably the only non-smokers that you will ever meet that always have a box of matches in the car. I am not kidding. One of these days, we are going to strike a match and the whole vehicle is going to blow up!

What an adventure! You have to take the bad with the good, and there is usually more good than bad. You have to be able to deal with things that are out of your control....I use laughter. =)

It's not all bad.....

I never intended for all my posts to sound so depressing. In retrospect, maybe I should have started off on a lighter note. But it was what was in my head at the time. Not everything with Matthew is sad and depressing.

Matthew has the most wonderful laugh.  I cannot help but to smile every time I hear him. I never know what he finds funny, but it must be a lot of things, because he laughs all the time. I love to watch him as he drifts off to sleep sometimes, too.....he gets the cutest little smile on his face. What's really funny to me is that he seems so aware of what's going on around him sometimes. It's like he knows and is just waiting for us to figure it out. My friend remarked that Matthew is in there, we just have to figure out how to get him to express what he is thinking or feeling.

I love hearing him wake up in a good mood, whatever time of day that may be. He laughs and plays and makes the funniest noises.

This afternoon when I picked him up from school, he made happy noises all the way to the car. I could not help but laugh with him. Simple little pleasures like that warm my heart and bring joy to my life. It's funny how a laugh or smile can wash away negativity and stress. =)

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