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My Sons

My oldest son told me he loves me for the first time last week. He is six years old. This is huge because Aidan has Down syndrome and usually does everything late. So, as his parents, my husband and I wait patiently (sometimes) for him to do or say something age-appropriate. There's no telling what "age-appropriate" means for Aidan. He does speak. A lot. This, in itself, is unusual for a little boy with DS. The problem is, he doesn't always speak clearly and even I can't always understand what he's saying. Last week he was sick and missed two days of school. He had strep throat (Aidan is the KING of strep throat, even with his tonsils out) and his appetite was gone. On the first day that he was feeling better, I made his favorite for dinner: spaghetti with marinara sauce and applesauce. It's no big deal because he has it EVERY night. I just make three days of spaghetti at a time so I'm not constantly having to make noodles. Anyway, he came into the kitchen to see what I was doing. When he saw his dinner being prepared, he said to me "Aw, thank you, Mommy! I luff you". Blinking away the tears, I continued preparing his dinner. I guess you really never know how much something means to you, how badly you have wanted it, until it finally happens. I've told him "I love you, Buddy" everyday and night since he was born. He finally told me.
Better late than never.

My son, Colin, turned one today. A friend on FaceBook posted that today is the anniversary of Roe v. Wade. I'm not sure if this is so, but I guess I could look it up. It doesn't really matter though. If Colin's birth mother had decided to abort him we would never have known nor would we have had the opportunity to parent such a wonderful little baby. I thank God for His Mercy that protected my son in his birth mother's womb. And I thank her for the choice to keep the baby (relatively) safe until he could be delivered and placed into our arms. Thank you, Sheryl, from the bottom of my heart.

A Word About the Drumming Video

I'm a drummer. not a good one. But once a drummer, always a drummer. Ned had this video forwarded to him from a Royal Australian Navy list he's on and I HAD to post it. To say I was impressed is an understatement. These guys are the best I've ever seen or heard. I was a part of the marching band in high school. Not fortunate enough to be in the actual band, much less the drum line. No, I was in the color guard. Yes, I was a band-geek wannabe. How bad is that?

Anyway, I started seriously playing the drums in my early twenties, though I had a set as a kid, but never took it seriously. It says a lot about a person who's ADD is so bad they can't even stick to playing the drums long enough to learn how to play even passingly well. Playing drums is a CLASSIC sign of ADD/ADHD. Or so my shrink tells me....

So this video is REAL ear-candy for me. I had to post it. If you like this kind of thing, I hope you enjoy it. I was not aware of these guys before today. Now I have a whole new respect for the Swiss. They don't just make watches and chocolate. They have rhythm, too! ;O)

It's The "Normal" Little Things

Quite a few things have happened since my last post. I got relatively good news regarding my health conditions so I've decided I'm not going to dwell on them. I am going to live my life, take care of my sons, and not let my crummy health dominate my thoughts or actions. I will treat the symptoms and continue to pray for healing.

Now, on to what I had intended to post. My oldest son, Aidan, will be 7 in March. Aidan is not your normal almost-seven-year-old in more ways than I can count. It's all a part of raising a child with a disability. We have exposed him to several game systems over the years, including a Play Station 1 that we had prior to his arrival. Granted, it's not the most high tech on the market anymore and we only have three games, which are my husband's, so I can understand his lack of interest. However, Ned got a Wii system a few months ago because he had to have it. He quickly tired of it because it's more like working out than actually "playing". To his credit, this was BEFORE he lost a lot of weight. Anyway, since he loved the movie so much, I went out on a limb and got Aidan a "Cars" game for the Wii for Christmas, hoping he would show SOME interest in something a normal six year old boy might enjoy. And guess what?! My son LOVES it! He's actually not bad at it either, for not having any idea what he's doing. His hand-eye coordination is impressive for a kid with fine motor delays and who is supposedly mentally retarded. I guess it just goes to show that we never know what is going to interest these special kids.

Another "normal" thing he does now is swearing. Yes, indeed! I'm the proud Mama of a six year old who can cuss like a sailor. Just kidding! He only says one bad word (for now). And in this house, it's the worst swear word he could ever use. He's been dropping the "GD-bomb" since Tuesday. And using it in the most appropriate context, like when he's messed up on something he's playing with. (Disclaimer: Neither my husband nor I EVER use this word nor do we watch movies with R-rated content in front of our kids. So he COULD NOT have heard it here. I'm thinking school.....yet another reason why I want to homeschool my sons so badly.) Not that there's ever an appropriate context to take God's name in vain, and I have no doubt he doesn't know what he's saying, but this is such a normal thing for a six year old boy to do that it almost makes me happy. See, when you're given a special needs child, instead of the perfectly healthy and NORMAL baby you were expecting, you learn that, like it or not, you now have a "new normal". And you never quite know what that "new normal" is going to be. Your child teaches YOU what you can expect. The rules change from day to day depending on whatever your child wishes it to depend upon. Some days you learn that you just have to throw every previous expectation out the window. Than, later on, you need to go retrieve them from outside and add to them even higher expectations because your child will do something you never anticipated. It's proof that doctors and therapists and teachers can only guess, based on their previous individual observations, what a child with a disability can or will accomplish. Each child is different and it's impossible to guess what they will be as an adult. You can only stand by and marvel and rejoice when they accomplish a feat that you never thought possible.

Like playing a videogame or enunciating clearly enough to understand when they use a very innappropriate cuss word. Gotta love boys!

Really Bad News

I received some potentially life-threatening news on Monday. If you are the praying type, I would certainly appreciate, nay covet, your prayers. Through shear luck on my part, it would seem I inherited the worst physical ills of both my parents. In 2004 I had a massive L5/S1 disc extrusion. After moving furniture the day before, I fell out of bed one morning because my left leg and foot had been rendered useless overnight. Scary, yes, but not fatal. I had been having low back pain for years and knew I had a "slipped disc", Two, actually. The L5/S1 disc had torn and had been gradually leaking disc material for years. Overnight it had become completely extruded, pressing on my spinal cord. This resulted in partial left hip and leg paralysis and a total left foot drop. It was just dangling from the end of my leg. Graphic, I know. Sorry.

But now I have learned that I have not one, not two, but THREE bulging cervical discs at levels C3/4, C5/6, and C6/7. I've been experiencing shoulder and upper back pain since the spring and finally went to my doctor the first time in July. His diagnosis was muscle spasm. On the x-rays it showed that my upper spine was pulled straight instead of in the normal curve, but he said disc degeneration was minimal. You can't see bulging discs on regular x-rays. When the pain didn't go away after three months, but instead worsened, I went back. Something (Someone?) told me not to just let it go. After a third visit during the first part of November, he finally sent me back to my neurosurgeon, Dr. Vincent (I call him Dr. Eye Candy 'cuz he's....well.....he's hot! And he has a great attitude and bedside manner, to boot) who sent me for thoracic and lumbar MRIs. They showed nothing in the way of disc problems that impressed him, but I do have a lot of inflammation of my lumbar nerves which is contributing to me still having a lot of lower back pain. He then recommended I have a cervical MRI to rule out anything there. My visit on Monday revealed that he is now impressed. I hadn't wanted to impress him this way. I was hoping the fact that I've lost 45 pounds might impress him since he's actually put on a little weight himself, LOL. Anyway, he didn't recommend surgery right now, which made me happy at the time; however, now that I've had 48 hours to think (and stress), I wish I were a candidate. I have my sons to raise and a life to live. I can't do any lifting, bending, stretching, or twisting. So working with Colin everyday on his gross motor skills is out. So also is the majority of his day-to-day care since I can't pick him up, lift him out of his crib, jump-a-roo, or high chair. I can't bathe, dress, or change his diaper either because he's quite a strong baby and loves to resist. He thinks it's fun! Someone else has to do almost everything. His care more often than not falls on my 75 year old mother during the day. I am so blessed that she is healthy enough to do it, in spite of her aches and pains. I would not give him up for the world. Not for anything! I have begun to surmise that taking on the responsibility of another baby caused strain on my discs, making them bulge because they're congenitally weak. I can remember having similar pain when Aidan was little, but it went away. I'm reasonably sure that all of the added work of caring for a baby has caused this to flare up. The problem is, if the C3/4 disc bulges too much, it can pinch off the nerve roots that control the ability to breathe. This is not good. And I've been having chest pain and difficulty breathing for months. I'm hoping bed rest and a dramatic reduction of my daily workload will ease the pain and cause a healing to take place. God once spoke to me, He literally whispered in my ear, "Trust Me". It was the most awesome moment of my life and I will never forget it. Still, I have a hard time letting go of control and giving everything over to Him. How's that for stubborn?!

So, please pray for me and my family. Especially my baby boys. They need their Mommy to be healthy and able to care for them. I know that God is "Jehovah Rapha", the God Who Heals. I am believing that He is allowing me to be tested yet again. Probably because previous trials didn't do what He wanted them to do in strengthening my faith to the point where I fully rely on Him for everything. As humans we have no desire to be dependent on anyone. We want to do everything for ourselves. Our free will is what got us into the mess we're in and now we're paying for our bad choices. I'm more independent than a lot of people in the respect that I am extremely stubborn and insist on getting my own way much of the time. God is really doing a mighty work in me and I can't wait to see what miracle He is going to do with my physical body even as He is strengthening my spirit.

I Found A Yummy Giveaway!

Well, it certainly has been awhile. Recently I joined a site called "Frugal in Virginia" because she has links to grocery deals and coupons. Ned and I are feeling the squeeze like everyone else and I decided to be more proactive. It's very worthwhile so take a look when you get a minute.
Anyway, the gal that has the site also posts giveaways that look great so I try to enter a few at a time. I never want to be greedy so I only enter the ones I really would like to win. I found this one at "Bargain Briana". This is a really cool site with lots of links to coupons, free samples, and online deals. At this time of the year, it's more important to me than ever to be able to save money. I'm sure you'll all agree! Merry Christmas everyone!

From A Parent's Perspective

I want to say a word or two about Down syndrome and living with it everyday by raising two children with the condition.

"He has a face only a mother could love...."

I've heard this statement made in jest all my life about people who are, well...... "not attractive in the classical sense". And it came to me shortly after our son was diagnosed with Down syndrome at birth. I immediately thought about others that I had known with Down syndrome and how they all looked the same to me. They all have the "mask" of DS which enables people to spot them immediately as having a disability, as being retarded, as being less than perfect. Imagine how it would be to wear your "disability" on your face everyday, knowing people are going to judge you by it, whether they mean to or not. I for one, experience this a little bit by being overweight. People automatically assume that because I am fat, I must be lazy, gluttonous, and don't care about my body or my health. They have no way of knowing about any underlying medical conditions which led me to gain weight as I have aged. They don't know what I eat or how much. They just look at me in disgust that I could let myself get that way.

People with DS must experience something similar. Not only are they not beautiful in the eyes of society, they also surely must be stupid and have a low "quality of life". (At least this is the excuse given by so many expectant mothers when they decide to terminate their unborn babies with DS. I guess they're told this by their doctors and why shouldn't they believe them??? They're supposed to be in the know, right?)

But as a parent of two little boys with DS, I know for a fact that they are NOT unlovely. They are NOT stupid. They have a FANTASTIC quality of life. I can see it in their eyes when they light up with joy at new things; a new toy, a swim in the pool, a trip to the park, or even just from listening to music they love. My precious six month old is starting to display his own little distinct personality. He loves to watch me warm his bottle by running it under hot water in the sink. And he loves playing in his baby bathtub. He kicks his chubby legs with delight when I put him in it and immediately reaches for anything that comes near his tiny, adorable hands. He especially loves the Thomas the Train cup I use to rinse his "crazy", curly, dark hair. And, like so many other "typical" (read "normal") babies his age, he's fascinated by ceiling fans, especially those with lights. He will lay on my lap and watch our fan, intently swinging his little arm in a big shoulder circle to mimic the fan blades going round and round.
My six year old is in love with music. And he can sing, sometimes even on key (LOL!).

There are times though, when I look at them and am overcome with grief for the trials they are going to have to face as they get older. They are going to be called names by the other kids in school. They'll be discriminated against simply because of the accident of their birth. They didn't ask for this. They didn't sin before conception. So why should they be punished? Why should they have to live with the mask of DS everyday of their life? Did we do something wrong that caused our biological son to be born with it? I've asked myself that time and again. I've begged God for the reason. I've railed at Him for giving this to my son; giving this to us. He is a smart little boy and he will realize one day that he is different. He will be teased and ridiculed for something he has no control over. I often wonder if he will ever get married or be able to live independently. He is certainly independent now, but he knows he is protected, under the shelter of his mommy's and daddy's love. Will he ever feel confidant enough to live on his own, with a roomie, or even a wife? This is one big reason we chose to adopt a child like him. So that he could always have someone.

But then again, aren't we all dealing with things we have no control over? Don't we all have issues in our lives? Things we are struggling to overcome that are not of our choosing? The difference is, most of us are given the full capacity to handle trials as they arise. People with DS often have intellectual differences that make it harder for them to learn certain things. They also have a harder time with impulse control and they have much lower inhibitions than we 46-chromosome people. That's why they seem to love more easily, judge less harshly (if even at all), and have a much sunnier outlook on life. It's not because they are clueless and have no idea what's going on. They just have the unpopular tendency to see the glass is half-full and the "would you like to share it with me?" mentality. Too bad the world is such a dangerous place for individuals who live their lives in this manner. Adults with DS also often have speech impediments that make them seem slow or even unintelligible. People mistake the fact that they can't put their thoughts into words for stupidity and don't take the time to get to know them. They are not often the slender idea of body perfection since they are likely to have hypothyroidism which leads them to be overweight. And it's also hard, when you live on social security disability (this is for another post altogether!), to afford healthy foods. And how many parents take the time to teach their kids with DS to cook anyway? So by the time they are old enough to make their own decisions about the foods they eat, they have no idea how to prepare a healthy meal, nor really the inclination to do so. It's just easier to pop in a microwave meal or eat some spaghetti-os out of the can.

I fully intend to give my sons the tools they need to be able to live an independent life. That's one purpose of being a parent, isn't it? To teach your kids to be self-sufficient? Why not kids with disabilities as well? I know them (or at least am getting to know them) and am constantly surprised by their intelligence, their senses of humor (yes, even the baby does funny things and then grins broadly when he's made us laugh), and their sheer.....normality. Is that a word? It is now, I guess. I also intend to help arm them with the highest sense of self-esteem so that when kids are cruel, when girls they like scoff at them, when they are picked on by older boys in the locker room, and are even disdained by elitist adults, they'll know that it's not their problem. It's those who are afraid of their differences, don't like the way they look, walk, speak, or even begrudge them their very existence.

I didn't intend for this post to go this way. I had wanted to talk about the joy of raising my sons. I guess my subconscious had other ideas. I'll write about the fun we have later.