Saturday, October 24, 2009

Friday, October 23, 2009

"D" is for Down syndrome

Doh

As in what Homer Simpson would say. I made a commitment earlier this month to post 31-for-21 and although I started off the month being nice and consistent, the past 2 weeks I haven't been as good, hence the 'Doh'. I will try to be better and end the month on a good note....

However, 'Doh' applied many months ago as well. What turned out to be the first time that Jenny and I found out that Camden's nuchal fold measurement was a bit larger than the doctor would have liked to see. As parents of children with Ds know all too well, there are numerous early markers that may point to increased chances of having a child with Ds. Well the day that we were informed that the nuchal fold was a bit larger than they'd like to see was definitely a 'Doh' moment.

Maybe 'Doh' is a bit harsh, but that's how I felt at the time. You see, Jenny and I had been trying for a couple of years to add to our family. We tried on our own for awhile, had some miscarriages, then we went the route of fertility treatments--all to no avail. At moments it was very frustrating as Jenny and I wanted nothing more than to have a baby. One month after a failed fertility session, we found out Jenny was pregnant with Camden.

You see, Jenny is one of those people who seems to know the moment conception takes place. ;o) Ok, maybe that's a stretch, but holy crap she knows right away and after confirming with a pregnancy test or 4 ;o) we were elated. That elation was short lived as it seemed like we were at the doctor's office quite often due to problems--unsuspected bleeding, cramping, etc. And based upon previous miscarriages, we were apprehensive to be excited, just in case something happened. I know that's an awful outlook to have, but with everything we'd been through up to this point, it was our way of survival.

Well, fast forward throw those first 8 weeks or so to the day we had that first nucal measurement and when the doctor shared the news that it was bigger than they'd like to see-- but that didn't necessarily mean anything more than he'd like for us to go to more of an expert--it was like 'Doh'. Why can't we have an easy pregnancy? No complications, everything's perfect, end of story.....

Looking back at what's happened since then, I wouldn't change anything for the world. Up to this point I know how lucky and blessed I've been to have such a loving wife and 2 amazing children already. However, since Camden was born almost 4 months ago, she has touched a place in my heart and soul that I never knew existed. A place that continues to be shaped and molded each day....and I am so honored to be allowed this glimpse into her life so far.

Yes there are many days ahead of us and I know there are plenty of trials and tribulations that we'll encounter, but I know there won't be anymore 'Doh' days in our lives with our little Camden leading the way.

Wednesday, October 21, 2009

Tuesday, October 13, 2009

"N" is for Down syndrome

Now

There's the saying, why do today what you can put off until tomorrow. LOL In this 24/7, go-go society we live in, sometimes it is easy to put off things today until tomorrow. Do some laundry? Nope I can do it tomorrow. Clean the house? Nope I can do it tomorrow. Run errands? Nope I can do it tomorrow. It can be an endless list sometimes it seems.

Sure, there are only 24 hours in a day and we need to try our best to juggle all of the things that need to get done. And as any parent knows, some days that tasks seems impossible. But one thing that should never wait until tomorrow is letting those close to you know just how much they mean to you. I mean really how much you love them and care for them and feel truly blessed to have them in your lives.

Sometimes we get too wrapped up in the happenings of our lives (or others) and we figure, oh, I'll wait until tomorrow to call Mom to say hi and let her know I love her. Unfortunately, as I'm sure many have experienced, sometimes tomorrow never comes. That's why it's important to live each day to its fullest and let those in your lives know just how much you truly love them. They will be forever grateful to hear those words you've shared with them.

Sunday, October 11, 2009

"Y" is for Down syndrome

Yes

I'll be honest when we first found out the results of the amnio, 'yes' may not have rolled right off of my tongue. There were so many questions that I needed to be understand, before getting to 'yes'. But it did not take long....and ever since saying yes and recognizing that despite all the challenges that raising a child with special needs will take, we have not looked back.

Sure there will be times along the way that may cause us to doubt for a little bit, but we will remind ourselves that we can do this. We made a commitment earlier this year to unconditionally love Camden Grace no matter what life throws at us. Having that conviction to say 'yes', when many people in our shoes would've said no, makes me very proud of the genuine love and support that is in our hearts to raise our special little girl.

Saying yes sometimes may not be easy, but saying yes to a difficult change can provide a lifetimes of riches.

Thursday, October 8, 2009

"S" is for Down syndrome

Strength

Quite a simple word, but not always easy to have strength in life. Life can throw a lot at us at various times, but at no time is it more challenging than with raising children. By far, raising kids is the most rewarding experience I've ever been blessed to have the opportunity to do. However, at no time in my life have I had to be stronger at certain points than I have been with raising our kids.

Kids challenge, question, fight, learn...then challenge, question, fight, and learn all over again. It's a never ending process and sometimes it can take all the strength in the world to try and remain calm and encouraging during difficult times.

This evening I am reminded of finding that inner strength in order to continue to help our children grow and develop--keeping in mind all the while, that my wife and I are not trying to raise perfect kids. We are merely trying to raise our children to be respectful, honest, giving, and loving people. People, who when they are older and reflect back on their lives can say to themselves "as much as a pain in the behind my parents were/are, they are the inspiration for how I want my child to grow up and be." (or something along those lines)

Wednesday, October 7, 2009

Monday, October 5, 2009

"N" is for Down Syndrome

Negativity

Sometimes it's quite easy to be negative when you get news that you aren't expecting. In fact, it's quite easy to be negative and remain negative when life doesn't work out exactly how you 'planned' it.

But one thing I have learned over the years--even before Camden arrived--is that life always will turn out differently than you planned. That's just how it goes. And it really comes down to how we handle those times when life throws you a curve ball--that truly determines what you're made of.

Earlier this year, the big guy upstairs definitely threw our family a curve ball by letting us know that Camden would have Ds. Yes, this affected us quite a bit at first--those first 3 weeks or so were quite the emotional roller coaster ride. But, instead of continuing with that negative thought pattern, we pulled ourselves up--with the help of friends and family--and decided that we could do this. Just because Camden would have an extra chromosome didn't meant we'd love her any less. Just because she may have delays in some areas, doesn't mean we'd be any less proud of her accomplishments.

Yes, it's easy to be negative in life, but you know what? It's really just as easy to be positive, even in the face of defeat. Sure, sometimes it's easier said than done, but in the long run, one's life will be that much better and more enjoyable by replacing those negative thoughts with positive ones and truly believing that you can handle whatever life throws your way.

Sunday, October 4, 2009

"W" is for Down Syndrome

Wonder

So it's Sunday evening as I sit down to write this and as I think of the theme that I decided to start off my 31-for-21 for, it brings me to the 'w' in Down syndrome. When I think of this, it brings to 'wonder'. Sure, in life, there's always lots of wondering--maybe sometimes too much wondering. For some time now I've been wondering how Reagan (12) and Jacob (closing in on 10) will do in life. They are such wonderful children, full of amazing talents and lots of questions.

It's been so amazing seeing them blossom into the children they've become so far. But I can't help but wonder what the next few years will bring. What activities will they continue to participate in. Will they continue to excel in school? Will they figure out what they want to become in life? Lots and lots of wondering. Seeing how they've grown in the past few years, I really think that they will continue to make very good choices. I find comfort in knowing that they are heading down the path to success--to achieving the goals that they have already set and those that are still yet to be planned.

That then brings me to 'wonder' about my little Camden Grace. Sure she's only a little over 3 months, so she still has plenty of time ahead of her. But I can't help but wonder how she will do in life. We've been so lucky so far with Camden's health--no major heart, hearing, sight, etc. problems. She's really doing well and I truly feel blessed that she's been so healthy so far, as I know that plenty of children with Ds struggle with various medical issues. But even though she's been healthy, I kept help but wonder how she will continue to progress. We are being proactive and have already lined up early intervention services, which I truly believe will be helpful for her continued growth and success.

But I also know that we live in a cruel, cruel world at times and I wonder how many times Camden will face difficulties because of people's cruelty. I know I can't protect her at all times, but I hope that Jenny and I can instill enough positive reinforcement, love, and support that when she does run into a negative issue, she can handle the hurt and pain that come with it.

It's not a question of if this will happen, but a question of when and how many times. And at those times, I will have to remind myself not to go knock someones block off for what they said or did to Camden. But rather show Camden by example, that even in the darkest hour, when we are hurting so deeply, that turning to our family for their continued love and support and talking through what is affecting us, will help us to be able to work through the negativity and grow stronger.

Yes, I wonder lots and lots...and I'm sure as our guys continue to grow, I will even wonder more....

Saturday, October 3, 2009

"O" is for "Down Syndrome"

Opportunity

Over the course of the 8 months or so since Jenny and I found out we'd be having a baby girl with Ds, something has occurred to me time and time again. When I think about the wonderful blessing that the good Lord has given us, I feel like it is an "opportunity" of a lifetime.

It's always amazing to me how I feel and handle 'negative' news. I guess it depends on the day and what may have happened already, but sometimes it seems like I can handle negative issues much better on some days than others. I'll be honest, it took some time to work through all the negative emotions when I first found out the news about our precious Camden Grace. But, after a few weeks of soul searching and becoming stronger through the help of my family and friends, I've really thought of Camden's Ds as an opportunity.

Not many people are fortunate enough to know someone with Ds, let alone have a child with it. I know Camden's only a little over 3 months, but I feel like I have already learned so much about Ds and just how much of a wonderful impact it can have on your life--if you truly open your heart and mind and allow it to do so.

This opportunity that I've been given is on that I will always cherish and appreciate. In life, we have a tendency to get wrapped up in the little things that can ruin your day if you let it. Like this afternoon, my brother-in-law was helping me with building a base for the shed we will be getting in a few weeks. There is a bit of slope where the shed will be built and as such, we decided that the best and most secure she base would involve digging some holes and pouring concrete footers. We rented a 2-person post hole digger to 'quickly' dig out the 4 holes that we'd need to set posts in the footers. After letting him know that we'd probably pound out those four holes in about 45 minutes, it ended up taking us closer to a little over 3 hours--yes, it was a comedy of errors. The post hole digger didn't seem to have much power/torque, the soil turned out to be heavy clay soil--just one thing after another.

Needless to say, with all of the issues we ran into with those 4 measly holes, we did not get as far as I had hoped. In addition, I was exhausted from using that post hole digger. It was quite frustrating to say the least, but all of that frustration was washed away when I came inside to see Jenny playing and talking with Camden. Seeing Camden's eye's as big as quarters and the huge smile on her face, made me quickly forget about how frustrating the last few hours had been.

I love the 'opportunity' that I've been presented with--more than words could ever say.

Friday, October 2, 2009

"D" is for "Down syndrome"

Okay, so it's day two of my commitment to 31-for-21 and I was thinking of something to write about...and I keep coming back to taking each letter of Down syndrome (Ds) and writing a little snippit of it--based upon my life of just finding out that I'd be having a daughter with Ds and my life since I've become more educated about Ds.

Before: "D" stood for doubt/defeat. I'll never forget the various emotions I went through earlier this year when my wife, Jenny, and I received confirmation from the amnio that Camden would indeed have Ds. As any parent who has gone through this process has undoubtedly experienced, the first few days/weeks were very dark. Looking back I attribute this doubt to the fact that I really had no idea what having a child with Down syndrome meant. To me, I just pictured all the things that Camden wouldn't be able to do--aka defeat. She wouldn't be able to talk, to walk, to play, etc. to function as any 'normal' kid is able to.

I feel very foolish for feeling the way that I did back then. I am typically a very positive thinking person--at least I try to be, even in the face of defeat. However, this was something very new and very scary to me, all because I did not really know about Ds. I was misinformed, much like many people who are not involved with someone who has Ds are.

After: "D" now stands for determination. I am truly blessed to have such a strong support system in my life. First and foremost, my wife Jenny. I know at times she questions things as well, but after taking some time for us to work through our emotions and really talking about this, I found strength from her in knowing that we could do this. Our families also provided the additional strength that we needed, reassuring us that even with Ds, Camden would touch our lives in ways we could never imagine. Having the opportunity to talk to some wonderful, wonderful folks at the Ds Clinic at Children's Hospital (Akron, Ohio), also helped me to realize that know matter how difficult and challenging things may be at times, that Camden would be more like a 'regular' child than different.

It took some time for me to work through those initial emotions, but having had that experience and opportunity to do so has helped make me a stronger person--one who is more determined than ever to be a better person. Sure, I don't know what the future holds; however, I am more determined than ever that my life will be blessed more than words could ever say, because Jenny and I were presented with a gift from the big guy up above, a gift that included an extra chromosome, one that will make all the difference in this world.

Thursday, October 1, 2009

In celebration....


of the 1st day of Down syndrome awareness month, our precious blessing--who just so happens to have an extra chromosome--Camden Grace Pyle.

Down syndrome awareness month

So I came across a really nice blog today (http://www.unringingthebell.typepad.com/) which talked about the 3rd annual 31-for-21...meaning 31 posts--one for each day :)--for the month of October, which is Down syndrome awareness month.

I think it's such a great idea. I know that things can be quite hectic in life with family, kids, work, etc., but I'm going to really make an effort to at least post something each day in October. It's really a simple idea, but what a profound impact it may have. After all, sometimes it only takes one little action to change the world. Here's to 31-for-21!