Covering the flaws?

Karston recently discovered a "bump" under his bottom lip. He was worried that it might be a pimple. I don't know if nine year olds get pimples, but I guess it is possible. We tried to let him know that it is normal and hardly visible, but he was so distraught over it as he went to bed.

As I have mentioned before, there are so many things about Karston that should stand out to everyone he meets, but somehow he has this uncanny way of blending in. Yes he does have a brace on his leg, he has a scar on his back that could cause anyone to think that he wears low ride pants too low, one of his front top teeth is chipped rather severely, and not to mention that his walk has a bit of different stride. Not to mention, he is pulled out of class at school every two hours to take his "Medicine." All of these things make him different, but not any less loved.

As much as these things could cause any person to have low self esteem, Karston takes them all in stride. He really is a strong kid. Yet this one little, nearly invisible, "bump" on his chin has caused him such stress. As I said he went to bed fretting over this blemish, and when I woke him up the next morning his first conversation with me was about a bad dream he had that nigt. Yep, he dreamed that he went to school and all of the kids laughed at him because of his "Pimple."

I guess it is time that we figure out how to be a Chameleon when hormones and natural change, starts to set in. This is a new one for us and just the beginning of how to deal with this stage of life in a child, er, little man that is growing in all kinds of ways.

I give Thanks...

I give thanks for my chameleon. There is a history in this family of trouble and heartache with sickness, birth defects or death with all of the first born in this family.

We all know God has a special plan for each of these first borns, even the babies that passed away. We are reminded of when Mary was pregnant with Jesus and Pharaoh declared that all of the first borns should be killed. I am not equating my son to Jesus, but I do know that God has a special plan for him that Satan does not want to happen.

We have expressed to our son how special he is and how Satan wants to steal the plan that God has for his life. We remind him of this when times get tough and it is hard to blend in with everyone else. He knows that he was never meant to blend in, he was never meant to be just like everyone else. He has the hand of God on his life and a special purpose for all of the difficulties that he will go through. He is a chameleon to most people that he will meet, but to God he stands out as one of his greatest creations.

So I am thankful for my Chameleon with special needs and a special purpose. I am thankful that God entrusted me with such a precious gift. I am thankful for all of my children and I know that God's plan for each of them is grand and full of Grace.

Blending in as Harry Potter

Feeling Great and Blending In...

I have learned a little bit about Chameleon Lizards since starting this blog. Such as... "Light, temperature, mood and health are all reasons these lizards change colors."* Really, I never thought much about lizards being moody. I do find it interesting though in relation to my son.

The Chameleon Lizard's color changes and blends with it's environment whenever it's tempearture changes, it's mood changes, and it's health is not well. My son the Chameleon also changes his colors when he get's too hot or if he gets himself in a bad mood (this is rare, he is generally a very happy child,) or if his health is not very well. The funny difference is this... My son blends in with his environment, UNTIL he is affected by temperature, mood or health rather than blending in because of these issues. He is the opposite of the Chameleon Lizard.

This past weekend our Chameleon changed his colors and did not blend in well. His temperature changed due to fever, his mood changed due to the pain in his leg and his health was not well. He was a great kid through it all, but it was quite obvious that he was having trouble masking himself and putting up his defenses.

I am pleased to announce that he is at school today, blending in nicely. He is not having pain in his leg and his fever is gone! Shwew, that was a close one, other people almost felt sorry for him because he was born with Spina Bifida. Life goes on.


*Information found in quotes in the first paragraph was found at : http://www.kidzworld.com/article/1740-colors-of-a-chameleon

The strangest phenomenon...

Something strange happens everytime my Chameleon is about to get sick and during the time that he is sick. We have asked all of the doctors about this strange occurance and they are all baffled by it. He had surgery on his left foot and ankle just after he turned three years old. Eversince he was very young we have always known when he was about to get sick. How? Well, his left foot has intense pain and gets very hot. Almost like he has a fever and severe cramping in his foot, before his body shows any sign of fever or sickness.

That is what we are dealing with today. He has been having very intense random, bouts of pain in his foot. He has been on the couch all day saying that he can't eat, he feels weak, and he has thrown up a couple of times. But the worst part is the pain in his foot. He screams an earshattering, peircing scream that I'm sure the entire neighborhood can hear. I have tried rubbing his foot, wrapping it in a cold wet cloth, and just about anything else I can do.

I want to help him, but HOW?

Cause and Effect...

I would like to mention a few Organizations that are helping families with Special Needs (the Cause) and how they have specifically helped our family (the effect.)


First I would like to mention the Ronald McDonald House. When Karston had to have his second spinal surgery and then a few months later surgery on his leg/foot, we were so relieved to be able to have a place to stay at the Ronald McDonald House near the hospital. At the time we lived more than an hour North of the city of Chicago and the hospital. There were times that we did make the drive back and forth and since then have made that drive many more times. But when our son had to have surgery that first time, we had only moved to the area months before. We didn't know the area, didn't know very many people yet, and we also had just added our second child to our family. We were so thankful to have a home away from home. The Ronald McDonald House gave us a place of stability when we were at one of the most unstable times of our lives. Not only was it a place to sleep, but other people came into the house and cooked for the families that were staying there. Heath and I have talked so many times about setting up a time that we can go back and cook for the families that are staying there now. There are a couple of things that we all can do to help this incredible organization.

Buy Cookies that Care
If you’re going to buy cookies, then buy ones that care about RMHC-CNI! “Cookies that Care” are available at McDonald’s restaurants and for each purchase, the owner of that restaurant will donate to RMHC-CNI.

and

COLLECT POP TABS to earn money for RMHC-CNI through recylcling. Pop tabs can be dropped off at any RMHC-CNI location or at any regional GREAT CLIPS.

Another Organization/Charity that I would like to mention is the March of Dimes. The March of Dimes is continually doing research on Spina Bifida among other birth defects and premature births. They have been really big advocates of Folic Acid which has been proven to be a huge help in reducing spinal and neural birth defects in newborns. I recently found out that the March of Dimes not only has an annual March for babies but also does an annual Bikers for Babies to help raise money to continue research and prevention. We have done the walk before on behalf of our nephew that was born premature and then went on to heaven after 42 days of a very strong fight for life. If you would like to help but can't make it to either of these events then there is something simple that all of us can do now.

Pick A Pumpkin Campaign -

Paper Pumpkin Patch Help ALL babies get a healthy start! Stop by a Circle K store pumpkin patch in Ohio, Indiana, Illinois, Kentucky, Michigan, Iowa and Pennsylvania in October. Purchase a March of Dimes paper pumpkin and fight for the lives of the tiniest babies.

The last organization that I want to talk about is not a charity. It is an organization that just does research for Spina Bifida. They have devoted everything to kids and adolescents that are living with this unfortunate condition. This place is a called C.H.A.T.S. Dr. Grayson Holmbeck, a clinical psychologist and professor at Loyola University Chicago, is the principal investigator of this study. This past year they came to our house twice to study us as a family and to study our son in social situations. C.H.A.T.S. has been going into the homes of families that have a child affected by Spina Bifida for the last ten years. This is a great resource for us to be able to see what other children my son's age and parents like us are also dealing with. It is just nice to read that there are other people out there that are also walking in our shoes. We are honored to be a part of this research and to know that other families will benefit from what we have shared while hosting the Loyola students in our home.

So I would like to encourage anyone that would be reading this to check out these links and possibly get involved in supporting these exceptional organizations. If you support the Cause you never know who you might Effect.

My son the Chameleon...

This blog is all about my oldest son. He was born with a Lypomyelomeningocele. It is easier just to tell people that he had a form of Spina Bifida. If you would like to know more about my son's birth story you can see it here. We have been through so much over the years with surgeries, trial and error procedures, embarrasing accidents and more. The physical evidence of my son's birth defect has been dificult, but not anywhere near as dificult as the emotional evidence of it all.

The reason that I call my son a chameleon is because he doesn't look like other victims of Spina Bifida. Most of these children are in wheelchairs, wear helments on their head and/or have some other physical ailment that immediatley lets all who see them know that these children live a very difficult life that most of us could never understand. When people see my son they see a boy just like every other boy his age. Some people never see the brace on his leg and those that do, are amazed that he would even need it. My son blends in with his environment every day of his life.

What they don't see is this. Every morning he wakes up 30min. early so that he can go through his bathroom routine. In this routine he begins by removing a soaking wet pull up that is a must for bedtime, then he puts on a rubber glove so that he can do digital stimulation (which really means that he is putting a finger in his rectum to open the muscles that release the bowel.) After he does this intrusive procedure he follows that with a suppository. He then has to try and push as much out as he can for twenty minutes. He then takes a liquid medication and does a self catheter to empty his bladder. The rest of his morning mimicks that of his younger brother with the normal getting dressed, eating breakfast, and brushing his teeth before running out the door to catch the school bus. While at school, an aid from the office comes to his classroom every 2 1/2 hours to take him to the restroom so that he can again do the self-catheter to empty his bladder. We are still trying to figure out the perfect amount of time between catheters and trying to help him understand the consequences of trying to get away with not doing it at all, which is having an accident in front of his friends, kidney infections that could lead to kidney failure and a few other things that he doesn't really grasp the severity of. As he grows and gets older we will always be adjusting all of his procedures. The doctors tell us that with every growth spurt (especially around puberty, which we aproaching faster than I would like,) that we have to worry about needing another surgery on the base of his spinal cord.

There is a limited amount of adults (outside of family) that know exactly what he goes through every day and his peers only see the physical evidence. My son does his best to explain away the questions that the other kids ask, but being a kid himself he doesn't really understand it all either. There have been several moments in his life when he ask us "Why can't I be normal like other kids?" The only answer I know to give him is that the other kids are not as "normal" as he thinks. I try to reassure him that everyone has something about them that makes them different from everyone else. I do my best not to cry in front of my son, but there have been times that the emotion of it all has become too much.

We have always insisted that other people not show our son pitty or treat him differently than other children. We want for him to gain confidence that he can live a "normal" life. On the other hand, we have needed at times to find other people that have walked in our shoes and understand the emotional conflicts that we go through. This has been a real struggle for us. So the intent of this blog is to journal our emotions (the joys and the difficulties,) and to document hospital and doctors visits.

You can also find me at http://reesie2u.blogspot.com where I blog about my three beautiful miracles (My children) and our day to day lives.