Words Do Matter

Lately I've been hearing the word 'retarded' thrown around everywhere I go - adults, teens, children say it. This word is offensive to me. I would like to think it's not just because I have a mentally disabled child - I have always found this word to be rude and just unnecessary; but just to be honest having Adam does change my perspective.

Just this week I was walking out of a local store and I heard a woman (I'm guessing she was in her 20's) say to her friend, "I am just so retarded." She was referring to the fact that she had forgotten to get something she had originally gone in the store for. This next example is even worse - this week the yearbook came out for my daughter's elementary school. She was riding the bus home and the two kids she was sharing a seat with were looking through the yearbook. They came across one of Adam's classmates (who is also disabled) and were laughing at his picture and calling him a retard. My daughter was so hurt by these words - no they were not about her but she is sensitive about disabled children and adults and understands this word is not appropriate to use...ever! She later said she was glad Adam's photo was not in the yearbook so they could not make fun of him as well.

Where are we going wrong as parents? as role models? as adults? Kids look to us constantly - they mirror and/or repeat what we say and do. We can't be on our best behavior all the time but we can try not to use hurtful and unnecessary language and we can - if we desire - never use the word 'retarded' or 'retard' again. And I beg of you if you hear someone you know use this word just ask them to stop and if they want to know why tell them...you never know maybe next time they won't use this word.

Words Do Matter...make your words count.

Sorry, we've been MIA

Obviously I am a horrible blogger, I feel guilty that I haven't posted anything in such a long time...the good news is we are all doing OK. The kids are currently on Spring Break and everything, thankfully, is running at a much slower pace this week. It's Thursday which means that won't last much longer.

Emma is nearing the end of 4th grade, it's bittersweet as I know this time next year we'll start thinking about Middle School. She just finished up with the State Swim Meet, she sawm the 50 yd Butterfly. Her coach told her qualifying for anything the first year of competitive swimming was quite the accomplishment. She is all about the Swimming and has proclaimed herself as a "Swimmer Girl" she even wants her room redecorated to reflect that...sounds like fun!

Adam is finishing up 1st grade, he has an amazing teacher that makes me feel so fortunate that he's at the school he's at. He keeps me busy, March was a busy month all around. He had several doctors appointments including a trip to Nashville to see the Neurologist. We are tweaking his seizure medication again, hoping for a little better control but wondering if we are headed toward a Vegas Nerve Stimulator anyway. Later this month we head to Montreal for another therapy clinic visit...that is a hard trip on us as it's so far away but I am sure it will be OK once it's here. We typically drive which is at least 17-18 hours one way (we break the trip up over two days.) Out of the four of us Adam handles the drive the best, he doesn't mind being in the car and doesn't even need a DVD player to occupy him!

I wanted to let you know about a revival we had at our church last month. A man of God from Uganda, Africa came to minister to us. We could not attend all the services but we were blessed by the ones we did attend. Sometimes I think Christians in America have forgotten the fundamental basis of true worship, perhaps we never learned it to begin with. On the Friday of the revival we had Onesimus pray for Adam - words can not fully explain what that was like. But I can tell you that was POWERFUL and unlike any experience I've ever had. God continues to form our lives on this journey with Adam - our story is already an amazing one and I believe God will continue to reveal his mystery to us thru this child.

We also got a new puppy, his name is Toby - a West Highland Terrier. He's currently four months old and a welcome addition to our family.

Take care my friends and may God continue to bless each one of you.

Reality Check

As I just posted our daughter, Emma, made a local year round city swim team. I guess I never quite realized swimming (at least in this city) is looked at as an 'elitist' sport. There are a handful of us families who do not drive a Mercedes, BMW or a Lexus and our kids go to public school instead of private institutions. Oh and did I also mention one of the first questions we get as being a new family is "where did Emma swim over the Summer?" I love the look on their faces when I say "the city swimming league!" Eeeek...can you imagine the nerve we have to bring our child to this swim league when she doesn't belong to a country club or prestigious neighborhood association swim team? How dare we!! If that weren't bad enough on our part we bring Adam along so these people who think they are high class have to see something they view as "imperfect."

I am not ashamed of my son, I am not ashamed that he's in a wheelchair and I will take him with me wherever and whenever I please - even if it makes people uncomfortable. Are people really so dumb that they think we don't see their stares or how they look at him like he doesn't belong? These people have no concept of viewing him as God's child and what's even worse is it appears they are raising their children to feel the same way. I even heard a parent whose child was coming close to sit next to us (you could tell they were interested in Adam) say "don't get too close" - come on people, he may not be able to walk and talk but he doesn't have a disease. I assure you your child won't catch my son's brain injury - it's not contagious!!

So, from my viewpoint this whole swim team experience is going to be a blast!! People like this need a reality check - they do not have an exclusive right to not be exposed to our world. If they become vulnerable and actually get to know us and Adam who knows even they might be changed by a child.

Fall 2008 update

I haven't posted an update on Adam in quite some time. The old website I was using for Adam is so unfriendly to update with, so I am switching to this blog format. To see Adam's old website Click Here.

Well, another school year has started and the children are back in the "swing" of things and finally on a routine. Summer was crazy and busier than I expected - we had some fun times, but it was busy nonetheless. In June Emma joined a city league swim team, the Shillito Superswimmers. She loved this and her team even won the Lexington City swimoffs. At the end of June Adam had an Video EEG at Vanderbilt in Nashville per the request of his new neurologist at Vandy...that went well in the terms of getting some seizures recorded in hopes of developing a better treatment plan for Adam. He has started a new medication, Trileptal, and we are in the midst of tweaking the dosage...so far it does seem to be helping. Then in July we celebrated Adam's 7th birthday while on vacation at the beach in South Carolina. I can hardly believe my baby is 7 years old, he has turned into such a handsome little boy!

Now that Summer is over we are getting in some great time with the ABR therapy - Adam doesn't mind one bit as we usually try to get at it as soon as he gets home from school at 1:00. He is usually tired and sleeps right through it. I would imagine as long as we've been doing this therapy he probably doesn't remember his life before it.

Oh and before I forget I am so proud of Emma - she qualified to be on a year round swim team here in Lexington, Wildcat Aquatics. She swims now 4 days a week and is already getting better at her strokes...watch out 2016 Olympics!! We are just thrilled she has found a 'sport' that is hers and is part of a team. There is so much kids learn from sports that you can't learn in the classroom.

Well, that's the update on us...hard to believe you can sum up a few months of your life in a simple few paragraphs. Of course I missed some things, but don't we all?

Children grow up fast

Recently I have realized just how fast children grow up. My sweet daughter, Emma, is almost nine years old in 3rd grade. She's changing so much, depending on us a little less every day. Pretty soon she'll trade in those baby dolls she's loved so much for gadgets like I-pods and cell phones. That will be a sad day, but so is the natural progression of childhood. We have her here for about ten more years before she'll be going off to college...I only pray we have taught her all she needs to know by then. I want so much for her, most of all I just want her to be happy.

My sweet boy, Adam is now six years old...how is that possible? He's getting so big, yet he remains so vulnerable all the same. He depends on us almost as much now as he did when he was just a baby. Some people who really don't know us may call that a burden, we do not. He is the sweetest, most angelic child I've ever known. He is so lovable and innocent - just this afternoon I was holding him for a bit after lunch and he laid his little head on my shoulder and just kept it there. I cherished that moment, perhaps a little longer than I should've (for there was much to do around the house)...but instead I soaked it up. See when you have such a medically fragile child you can't help but wonder if you'll have this chance again. Thus we soak up every bit of him, every day. Something all parents should do with their children, but life gets in the way. Adam has made our life slow down...we take that time that otherwise we may not. Yes, that's just one more way I've been changed by a child.

Two friends of ours we've known for the past five years are expecting a baby early next year. Of course we are happy for them. This will be their second and last child. Yesterday they had the ultrasound to find out the sex of the baby. The wife was telling me how it went, she said her husband was so nervous before the ultrasound because he was worried something might be 'wrong' with the baby. Once he realized all the arms, legs and body parts were there he was relieved. This is a event not so unlike what most parents experience during those ultrasounds...if you've heard it once you've heard it a thousand times: "Does he have all his fingers, all his toes?" Now I think really, would your life be so devastated if your child was missing a finger? missing a toe? From my unique vantage point that would be just a minor inconvenience. Has knowing us made them nervous? Here we are your 'All-American' family of 4 raising a disabled, wheelchair bound child - is the portrait of our life what they would never want? Do they ever stop to realize we have a good life, we love our son...just as much (maybe even more) than we would if he were 'normal?'

Raising a child with significant special needs changes ones perspective about all sorts of things. Most of all I see people as being naive, thinking something like this would never happen to them. The truth is there are couples all across this world from every walk of life raising children with special needs. I would imagine not many of us could've seen our life turning out quite this way. But I would also venture to say quite a few of us feel like it's blessed our lives more than we could've ever imagined.

There's not much I can do about other people's perceptions, they will think what they think. As for me I am thankful I have been 'changed by a child.'