World Down Syndrome Day 2012

Today (3/21) is World Down Syndrome Day. It is celebrated today because of the symbolism of 3/21 - three copies of the 21st chromosome is what causes Down Syndrome.

Down Syndrome is something that is on my mind pretty much every day, but I realize for most people it is not. For that reason, I think days like today are so important. It's one more opportunity to share with the world that Down Syndrome is not a horrible disease and the people who have it don't need to be hidden away in institutions.

The best way that I know how to raise awareness is to share our story. So, even if you have heard it before, I hope you'll take the chance to read it again.

When I was pregnant with Aaron, I had no idea there was anything "wrong". I had all of the testing recommended by my OB (including what was then called the quad screen - which gives you "odds" that your baby will have a genetic abnormality) and everything came back normal. We had several ultrasounds which never showed anything unusual. I have always been a big advocate of having as much information as I can so I will be as prepared as possible. I would never have chosen to terminate my pregnancy if we had known beforehand, I just wanted to know, so I would have time to prepare. But, apparently that wasn't part of God's plan for us.

As it turns out, no one knew that Aaron had Down Syndrome when he was born. My blood pressure went up when I was about 38 weeks and my doctor decided it was best to induce me. I went to the hospital the night before the induction and ended up going into labor before they could start. Labor progressed quickly - so quickly that Matt only made it to the hospital about 20 minutes before Aaron was born and our doctor didn't make it at all. I also didn't have time for an epidural. I never thought I'd be able to give birth naturally, but I did it and I still consider it one of my biggest accomplishments. So a random doctor that happened to be in the hallway delivered Aaron. Everything was fine and we were perfectly delighted with our new little boy.

I have read a lot of stories from people whose children were diagnosed at birth and most of them talk about how all of the nurses and doctors get really quiet and start whispering in the delivery room as soon as the baby is born. It's usually pretty obvious to the medical professionals when a baby is born with Down Syndrome. But that isn't part of our story either. There were A LOT of nurses in our room when Aaron was born but that was because he came so quickly and there wasn't a doctor there until the very end. None of them seemed concerned after he was born. Nobody rushed him out of the room or whispered to each other or looked at us with concern on their faces. No one mentioned Down Syndrome until later that night (he was born around 6 in the morning).

Not long after Aaron was born we were taken up to our post-partum room at Northside Hospital. When the Pediatrician came in to see us that night he is the one that completely flipped our world upside down. It was a doctor we didn't know. Northside has Pediatricians on staff that see the babies and then send their reports to whatever Pediatrician you choose to use once your baby leaves the hospital. So it was this doctor who we had never seen before that walked into our room and told us there might be something wrong with our son. I don't remember a lot of the details of what he said. I felt like someone had shot me when he said he wanted to have Aaron tested for Down Syndrome. I am a nurse - a Pediatric Nurse at that - but I didn't know much about Down Syndrome. I knew that most kids with Down Syndrome were treated badly (by other kids) and kept away from the other students at school when I was growing up and that was enough to make me fear it for my child. So here I am on what should be one of the happiest days of my life (and had been up until that point) with a doctor telling me that my child may have a disability. I think I remember him saying something like "he doesn't have a lot of the features, but I think I want the geneticist to come see him and see what he thinks. I don't think he has it, but let's be sure." It was enough to scare us but we clung to the belief that he thought Aaron didn't have DS. The next morning (at least I think it was the next morning - everything runs together after that Pediatrician came to see us) the geneticist came in to see us. He checked Aaron thoroughly and told us a lot of information about Down Syndrome that I couldn't process at the time and gave us a packet to take home about it. He told us he was on the fence about whether or not Aaron had it and that wasn't typical for him. He had seen thousands of babies and he usually knew one way or the other. Aaron didn't have a lot of the typical features of a baby with DS and to me he just looked like a baby. MY baby.

Getting a diagnosis was as "simple" as a blood test and they said it would be prioritized since he had already been born (meaning it would be looked at ahead of those that were from amnio tests). Of course, since nothing is ever simple for us, they sent the sample to the wrong lab - it went to New York instead of Florida - and it took a week and a half to get the results instead of just a few days. Needless to say, it was the longest week and a half of my life. When we finally got the results and our worst fear was confirmed, I was upset, but not as devastated as I thought I would be. I think by the time we got the official results, we already knew what they would say. That's not to say I wasn't upset. I cried a lot for the first few months of Aaron's life. Friends and family sent congratulations and condolences. It was a very surreal feeling and range of emotions. I wanted to be happy about my new son. And I was. I never had a problem bonding with him and I fought tirelessly to get him everything he needed. Nursing him was VERY difficult, but I was determined and after about two months of trying to nurse, pumping and bottle feeding, he finally got it. Another huge accomplishment for both of us.

The emotions we felt during those first few months are difficult to describe and impossible to understand unless you have experienced it. I gave birth to a beautiful baby boy, but the diagnosis that came shortly afterwards stole from me the child that I thought I would have. We all have hopes and dreams for our children. They typically start before our kids are born. We dream of what they will do, what they will look like and the people they will become. We dream of what their interests will be, the friends they will have, the college they will go to. When Aaron was diagnosed with Down Syndrome, those dreams were shattered. Although I didn't lose my son, I lost the son I thought I would have. And although it seems crazy to anyone who hasn't gone through it, it was a very real grief, one that I probably won't ever fully recover from.

In the three and a half years since Aaron was born, I have changed. I look at the world differently, I look at people differently and I look at myself differently. Although I was utterly shattered when Aaron was diagnosed, I have come out of it thankful for many things. I am thankful that I have already accepted that my children probably won't be the people I dreamed they would be and that's okay. Whatever they do and whoever they are is okay with me, I will love them no matter what.  I am thankful that I have the opportunity to really enjoy and appreciate every accomplishment that Aaron has. They are so much sweeter when you see how hard your kids work at them. I am thankful for the love that Aaron has already spread through the world. He blows kisses and gives hugs to pretty much everyone he meets. His smile lights up any room he is in. The joy and love that radiates from him is unbelievable and unmatched in anyone I have ever met. He may learn more slowly and have to work harder to do things that you and I take for granted, but that doesn't make him less of a person or any less valuable than the rest of us. Down Syndrome is not the devastating condition that I thought it was three and a half years ago. I think if we could all slow down a little and take the time to learn something from the people in this world with DS, we would all be better off.

Pictures of the Boys

We have all been sick lately. Some horrible cold that doesn't want to go away. It gave Jacob and ear infection, Aaron pink eye and has some how made me sick again before I really got over the first bout. We have been a pretty miserable bunch for the past couple of weeks, but I did manage to take the kids outside to take some pictures at the end of last week. I figured I would see what kind of shots I could get with my fancy camera. I'm no professional photographer, but I'm pretty happy with how they turned out. Here are a few of my favorites!

Magnolia Munson

So Matt and I temporarily lost our sanity and decided to get a puppy! An English Bulldog puppy to be exact and we are all completely in love with her. She is all white (with some black spots on her ears, but all the fur is white) and just as cute as she can be. Right?!

We decided we would go ahead and name her because if we let the kids name her she would be either "Dog!" (Aaron) or "Woofy" (Jacob) or something to that effect. So Matt and I settled on Magnolia (for the beautiful flowers/trees in our home state of Georgia) and Munson (for the late, great Larry Munson - longtime Georgia Bulldog football radio announcer) and we'll call her Maggie for short because it's such a cute name!
Since she's so cute, here's another picture.

 Rather than telling the kids before we brought her home, we made it a surprise. We took her to the vet to have her checked out before introducing her to them because we didn't want any broken hearts if there was something seriously wrong with her (Matt and I have been through that with a puppy before and really didn't want our kids to experience that too). Luckily, the vet checked her out and said she looks great. Perfectly healthy and ready for her new home.

So when I brought her home, she was in a box (without the top on it - I'm not inhumane) but the kids couldn't see her. Matt told Jacob we had a new family member and he got a really confused look on his face. When I showed him what was in the box his jaw dropped and his face lit up. Aaron started doing the sign for dog (which is patting the side of your leg) and yelling "Dah!" "Dah!".

So, Friday will make one week since Maggie joined our family and so far things are going great. She isn't so sure about Jacob yet (the feeling is mutual though) and she likes to play with Aaron (again, the feeling is definitely mutual). She likes to eat, sleep and chew on things. Crazy, I know. For the most part, she uses the puppy pads and she has fit in with our family pretty seamlessly. We all love her and hope she lives a long, happy life with us.

Aaron is especially fond of her and I have been astounded at his instinctive calmness with her. As wound up as he gets, I thought he would be really rough with her. But once she was comfortable in our house and he had calmed down enough to stop yelling "Dah!" at her every time he saw her, he has been nothing but gentle. He sits down when she is out playing with him, he pets her gently, he gives her hugs (without squeezing her) and he holds his hand out so she can sniff him. It appears they already have a kinship which I hope will be good for both of them for years to come.

So, I hope you have enjoyed the pictures of our new furry family member. Welcome home, Maggie!

Craft Time

Although I am not very "artistic", I do have a creative streak and a love of making things that most definitely came from my mother. Being the only female in the house, I am pretty much on my own when I want to take on a craft project, but that's alright. Trying to find a big enough chunk of time to actually get something done is always a challenge, but every once in a while the stars align and I manage to finish one of my many projects.

Since no one in my house really cares about any of the things I make (what can I say, they are boys) I figured I would share them here!

Most of these ideas came from Pinterest, or were inspired by things I found there. I love that site! Makes me feel crafty even when I'm not. :-)

I saw a similar sign on Pinterest that was made by someone that was selling it on Etsy for about $40. I LOVE the saying, but didn't want to shell out the money for it, so I thought I would try to make one myself. I found a piece of plywood and a decorative dowel at Michael's and painted them both white. Cut the letters out of scrapbook paper using my Cricut machine and glued them down with Mod Podge. I added a picture hanger to the back and voila! I love that I was able to make it my own, with the colors I wanted and only spent about 10 bucks.

I came up with this one on my own! The door hanger cost 99 cents and I had everything else. White craft paint, black paint pen, green Sharpie and the Cricut machine to cut out the monkey and vine. I think it's cute, but Aaron likes to take it off the door and throw it. Of course.

I actually made this several months ago and have been using it with much success! I got the inspiration for this from Pinterest as well. Each child has a pocket with "technology tickets". I cut up pieces of scrapbook paper and tied ribbons to the ends. Each ticket is worth 30 minutes of technology time (tv, video games, computer, etc). Jacob gets 14 tickets per week and can use them as he pleases but once they are gone, they are gone for the week. Occasionally, we take away a few tickets when he gets in trouble as well. There are limitations, he can't use any until his homework is done and he can't use them all at once. Mom and Dad always have the right to overrule his decision on when/how to use them. For the most part it has worked great. Makes it easier (for both of us) to see how much time he has spent in front of a screen.

Thanks for taking the time to see what I have made over the past few months! 

Overcoming the Exhaustion

I love my son but taking care of him is exhausting. I like to think that my friends whose children don't have special needs are also tired, and I'm sure they are, but not like this. It's not complete mental, physical and emotional exhaustion every single day. I feel like I am constantly running a marathon and the finish line is nowhere in sight. In reality, there is no finish line.

I don't like to complain about being Aaron's mom. I am so thankful that he is my son and that God decided he belonged in our family. He has changed our lives in unbelievable ways and I really don't want to change it. But it isn't easy.

There seems to be two different ways of thinking about Down Syndrome out there. Many parents look at it as a blessing and wouldn't change a single thing about their child even if they could. If there were somehow a "cure" (which is kind of ridiculous - you can't change someone's DNA), they wouldn't want it because it might alter their child's unique and wonderful qualities. I get that, I really do. I'm not sure I'm squarely on that side of the fence, but I can understand the thoughts behind it.

Then there are the parents that look at it as a terrible disease. The parents who will do anything and everything out there to try to minimize the effects that this extra gene has on our children. There are nutritional supplements, rigorous therapy schedules (as if our five hours a week aren't enough!) and dietary protocols that are aimed at improving the child's chances of living a more "normal" life. I know I'm not on this side of the fence, but I can see this perspective as well.

Honestly, I think I fall somewhere in the middle of these two views of Down Syndrome. Either that, or I still haven't quite figured out how I feel about it. I have a feeling I'm not the only one who is stuck somewhere between "I love DS" and "I love my child, but I hate the syndrome". I have always hated the stuck in the middle feeling. It's not a good place to be. But I suppose part of my journey is to learn to accept that. It doesn't have to be all or nothing. If a miracle drug is developed someday that will effectively eliminate all of the effects of Down Syndrome in my child, I will have to decide then if it is the right thing for him. I'm not holding my breath, but you never know what the future might hold.

For now, I'm just trying to get through each day. Running through the never-ending race that is my life. Doctor's appointments, therapy visits, trying desperately to figure out how to communicate with my son, studying every label of every food that might go into his mouth to make sure it isn't going to make him sick, running after him or trying to hold onto him every minute that we are outside of the house, beating myself up about not doing enough for him, trying to make sure I give Jacob everything he needs while constantly worrying about his brother, struggling just to make dinner for my family because I'm so tired and stressed out by the end of the day and wishing I had time to even think about doing something for myself. There is so much more that goes into every single day of my life, but that is just a sampling of the thoughts that I have on a daily basis. I want to update this blog more frequently. When I actually do get a few minutes to think clearly, I have to decide whether writing for my paying job, cleaning the house, attempting to relax or one of the dozens of other things I need to accomplish will be the priority that day. Unfortunately, this blog doesn't top the list very often. It's therapeutic for me to write here, but there are just so many other things that need to get done, that it doesn't happen very often. And it's really hard to form a complete thought when I have a three year old tugging on my arm and screaming at me to turn on Blue's Clues...

The Value of a Life

I had to take Aaron to the doctor today because he has been hysterical for the past three days and I had no idea why. It turns out he has an ear infection and it looks like his tubes are gone, so we are probably on the fast track for our fourth set of ear tubes.

Life has been really stressful lately and I often feel like I am not doing enough for Aaron or I get frustrated because I just want to be able to understand what he needs. The communication is getting better, but it is still exhausting.

But tonight, in the midst of my stress and frustration with my own situation, I came across this post about another family's struggle.

Brick Walls

Appalled isn't a strong enough word to describe what I felt after reading this. I found this story posted on a Facebook friend's wall. This Facebook friend has a son with Down Syndrome and horrifyingly (is that a word?!) was told the same thing about her son.

To summarize what happened, this family has a little girl with a chromosomal disorder and she has kidney failure. She will need a kidney transplant sometime in the next six months. Her parents take her to the Children's Hospital of Philadelphia (CHOP) which has an excellent reputation as one of the best children's hospitals in the world. A few days ago, they went to discuss her medical needs with the Nephrologist and were told that she was not eligible for a kidney transplant because she is mentally retarded. They had written it down on a piece of paper and highlighted it. When the parents said they would find a family donor and didn't need to be placed on a donor list, they were told that the surgery still wouldn't be done at CHOP because of their daughter's disabilities. They told her mother that her daughter's life wasn't worth saving. TO. HER. FACE. If you haven't read the blog post, you need to. I can't adequately express what happened here because it didn't happen to me.

But the panic is rising inside me. Just because this little girl doesn't have Down Syndrome doesn't mean it  hasn't happened to children who do. I have already read multiple accounts of this happening to kids with DS. And it shouldn't be happening to ANYONE, regardless of their disability. If someone ever dared to tell me that my son's life wasn't worth saving, that his life is less valuable because he has DS, they had better say it as they run in the other direction. As far as our society has come to improve the lives of people with disabilities, we clearly still have much farther to go. No doctor should have the right to tell a parent that their child isn't worth saving because they might not be as smart as other kids.

I don't know what I can do about this, but I can't do nothing. It's not right. I can't stand that this is happening and something has to be done to make it stop.

So, despite the stress and struggles we have been dealing with lately, reading something like this suddenly puts it into perspective. All of the work is worth it. My son may not be able to talk to me yet, but he will. And his life will ALWAYS be every bit as valuable as anyone else's.

Christmas in Arizona

We have tried hard over the years to spend the holidays with our families. Since we got married 9 1/2 years ago, we have lived in four different states and had numerous types of work schedules to contend with but most years we have managed to get back to Georgia for Christmas. This year, even though we live on the other side of the country from our families, we decided it was best to stay home for Christmas.

Turns out it was a great decision. It was so much easier for us to be at home on Christmas morning. I was able to get the kids everything I wanted to get them without worrying about how big it was or how we were going to get it home.

We love our families and we missed being with them all over the holidays, but this is what works for us right now. I know I'm a couple of weeks late with this, but Merry Christmas everyone!