Kinship

As a mom of a son with CHARGE Syndrome, I feel a special kinship to others who are like me. I have yet to actually meet any of the other parents in person, although it won't be long....but, I still feel a special affection for these special people; the kids with CHARGE and their families. We are brought together not by family ties, but by the similar medical experiences and situations. We understand the challenges each other have faced and continue to face on a daily basis. The fear, the heartache....dealing with doctor's appointment, endless procedures....and dare I mention the 'looks'. We look to each other for encouragement, love and support.

Tonight as I write this, my heart aches for Paul and Noel Gilman and their family. Today, they lost their son, Alex, who was nine years old. It's hard to understand and accept the loss of a child. I have read so many beautiful words on Noel's facebook page. There is no doubt in my mind that Alex's short life touched more people than we will ever know. So many times since Matthew was born, Mike and I have faced losing him.....there were so many close calls.....reading Noel's posts have touched me and brought back so many memories. I am honored that I was given the chance to see the love that this family shared.

Life is a precious gift.

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." Washington Irving

Sweet

Sorry that I have not posted in a while.....things have been pretty much the same. Matthew has had good days and bad days. The good days, full of giggles and silliness are fun, but the bad days....the ones with the crying and pinching, hitting and biting, are pretty tough to deal with. Because of this, we hardly go anywhere anymore.

Today however, was different. Today we ventured out despite the warnings of ice and snow. We traveled to Bryant to see our grandson, Xander, be dedicated at church. It was quite an adventure! We got up and got ready, and let me tell you, I was worried. All of the weather forecasts promised bad weather, and Matthew started the day off upset. I had to medicate him and just prayed for the best. To make things worse, Cody and Dedra had to head back to Nashville today, so we were already missing them and worried they might get into bad weather as well. We got to the church in Bryant just fine, but had already received word that sleet was accumulating at home. We weren't able to hang around and spend time with Alyson and Xander, instead we had to get on the road as soon as his dedication was over. I have to say, in spite of the weather and how the day started, it ended up great. Matthew held Xander for the first time, and they seemed to like each other. lol And although what should have taken us just under 2 hours to get home took just over 3 instead, we made it home safe. In fact, everyone did. Alyson and Xander are safe at their place,   and Cody and Dedra are safe at their place in Nashville. Matthew even laughed most of the way home.

What an adventure! ♥

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.