Wednesday, October 17, 2012

The Ability to Live

I am sitting in my car with Aaron waiting for my husband, who is talking to someone inside a car dealership. A salesman inside looked at us and the first thing that crossed my mind was "I wonder what he is thinking." The thought didn't last long. I really don't care what he is thinking. But that isn't always the case. Far too often I do care what other people think and I don't think I'm alone. It has gotten better as I have gotten older. Other people's opinions matter less to me now than they used to. But how great would it be if they truly didn't matter at all? If other people's judgements and thoughts about us were completely irrelevant and we could live our lives without worrying about how we "look" to others.

Then it hit me. That is exactly the gift that my son - and most people with Down Syndrome - have been given. You know the saying "dance like no one is watching"? That's what he does. He dances, sings, expresses his emotions and LIVES like he wants to. Like no one is watching. Like he doesn't care what anyone thinks. I know he is only 4 but many 4 year olds have already lost the ability to live like that. And since I have had the pleasure of meeting many older children and adults with DS, I know this isn't something that will go away as he gets older. These people have been given a gift that we all strive for. The ability to live life to the fullest. To see joy in the world. To love other people and treat those around them with care and respect. How many people without DS do you know that blow kisses to strangers and hug everyone they meet? Don't you think the world would be a better place if more of us did that? Or at least greeted others with warmth and a smile?

Society may say that people with DS are disabled. That they are different and should be pitied or worse, never brought into this world at all. But I know the truth. They have something that we should all strive for. They get to LIVE.

And today I am thanking God for bringing this child into my life and allowing me to see that.

Friday, September 21, 2012

Aaron Rocks Out

Aaron loves music. He loves dancing. And, amazingly, his favorite music has nothing to do with Elmo or Blue's Clues!

No, Aaron's favorite group is none other than:

The Black Eyed Peas

So, here's a hilarious video of him dancing to "Boom Boom Pow".

Thursday, August 30, 2012

Selective Hearing

Aaron comprehends a lot more than even I realize most of the time. The other day he saw a sticker with the number one on it and he brought it to me and held up one finger! He knew it was a number one! Incredible!

Then we have days like today when he wants to watch Blue's Clues for the 10th time and I tell him "no". But he just looks at me like he doesn't understand me and gets closer to my face and asks over and over again. He sure knows how to play up the "I don't understand card". Stinker.

But don't worry I'm not giving in. I've got his number. 😉

Friday, August 24, 2012

We Have a Talker!

When Aaron was born and subsequently diagnosed with Down syndrome, several people told me that they believed he would grow up to be a great speaker. That he would have an impact on this world. That he would do great things with his life.

Those are all great things to hear when your child has just been diagnosed with a permanent, developmental disability that will alter the course of your life.

I don't know if those things were said to me to make me feel better or because the people who said them truly had a strong feeling that they were right. Whatever the reason though, they have stuck with me over the past four years.

Specifically the one about being a great speaker. It had to do with his name. Aaron is a biblical name. Aaron was Moses' brother who spoke for him when Moses could not.

However, as the years have passed and the words haven't come, I have wondered if there would ever be any truth to those words that were spoken to me back to then.

We have been getting speech therapy since Aaron was just a few months old and all along his therapists have told me that he is doing great and they are so proud of him and he is improving so much. And while I appreciated the praise and encouragement, I couldn't help but think:

But he still can't talk!


TODAY Aaron said "Thank You" to me. He didn't use sign language and I didn't prompt him. He was eating breakfast and I told him he was doing a good job using his fork and he looked at me and said "thank you", then went back to watching Blues Clues.

It actually took a minute for me to register that he had actually spoken to me. Then I almost burst with delight.

To be clear, these weren't Aaron's first words ever. He has been saying "Daddy", "Bubba", "Ball", "Pop", "Papa" and occasionally "Mama" or "Mom" for a while now. But they are just single words.

"Thank you" is a phrase.
It has distinct sounds that differ from each other.
And he didn't sign it at the same time.

All of these are huge breakthroughs for us that for me, pretty much equal the excitement I felt the first time he walked independently.

I don't know if Aaron will grow up to be a public speaker or change society in any dramatic way. But he has already impacted many people's lives and he is going to make a difference. Some how, some way, to someone. Even if it's just me. He already has.


Saturday, August 11, 2012

I'm Not Special and Neither is My Kid

First, I want to say this post may be a bit controversial and it may even offend some people. If so, I'm sorry in advance. My intention is not to offend anyone, but instead to give you a glimpse into my life and the lives of many other parents of children with special needs.

Just a few days ago, I read a Facebook post from one of my favorite DS parent advocates, Noah's Dad, asking parents to help him with a list of Top Things NOT to Say to the Parent of a Child With Down Syndrome. While I have heard a lot of sentiments that were listed (thankfully, not all of them because some of them were really cruel), one that is repeated very frequently to many of us is this:

"I believe God only gives special children to special people."

Now, if you don't have a child with special needs, I know what you are thinking: "what the heck is wrong with that?!?" Right? It seems nice and complimentary and typically comes from a good place in your heart.

Well, let me tell you why it's not. Even if you mean it in a nice way (and I believe most people do), what it says to me is this:

"I'm glad it's you and not me"

I'm not special. There's nothing different about me or my family. I have two little boys that I do my best to take care of every day. My son who has Down Syndrome has also been diagnosed with Celiac Disease, multiple food allergies, Sensory Processing Disorder, PDD-NOS (which is on the autism spectrum), Asthma, Sleep Apnea, chronic ear infections and several other smaller issues that I can't even think of right now. We go to therapy four times a week, see 10 different doctors on a regular basis and have to worry about things like how to provide him with the best and most inclusive education while also providing the supports he needs. I haven't even had to go to an IEP meeting yet because he hasn't started school, but let me tell you, just the thought of it is overwhelming.

If this is what it means to be "special", I don't want it.

That's not to say I don't want my son. I love him, I would and will do anything and everything for him that he needs. But you would too if he was your child. That's what we do as parents. I'm not any more or less special than you are because my son faces these challenges.

I wish that I could go out somewhere and allow my child to walk next to me. He is almost four years old. But I can't. He will run away from me. He has no safety awareness. He can't communicate with other people. He is cute and friendly and blows people kisses and they all think it's adorable, but they also wonder why he isn't talking back when they speak to him. This isn't what I want for him. I wish I could take him to the playground and talk to my friends while he plays with the other children. But I can't. He will get hurt or run into the street. I wish I could send him to school without agonizing over what environment is best for him and wondering how in the world to trust these strangers that are supposed to be teaching him. He can't talk to me to tell me what is happening at school.

I don't say all of these things to make you feel sorry for me. While raising a child with special needs is challenging, it doesn't make me special. And I truly don't believe I do anything different than any other parent would do.

People can say really cruel things and by no means is this the worst that I or most parents who have children with special needs have heard, but it doesn't say what you think it does to us. It makes it sound like you pity us. And we don't want pity. We want our kids to have the opportunities and acceptance that yours do. We want friends and family to accept us and our kids and give us support when we need it. Although my outlook on life changed when Aaron was born, I didn't suddenly become someone that was more "special" than any other parent.

If my life or my son's life inspires you or makes you appreciate your own kids more, that's great. Tell me that. If you think I'm stronger than you are, you are probably wrong. I get by, I do what I can for my kids and I try to handle it all. Most of the time I feel like a nervous wreck.

I certainly don't feel special.

Monday, June 4, 2012

End of 1st Grade and Georgia Bound!

The end of the school year was crazy as always so now it's been another month since I updated the blog. Oh well! Since the last blog post, Jacob finished 1st grade and we made it safely to Georgia to begin our summer tour.

Jacob finished his school year on May 25th with a very long and difficult day (insert sarcasm here) that consisted of going to the park for two hours and getting out of school at 10:50. He did tell me a few days before school was out that he was sad that school was ending because he loves it. At least I know he didn't mean it all those times he didn't want to go because it was "so boring". :-)

We really did have a good school year. He excelled in all of his assessment areas and we both loved his teacher. We only hope 2nd grade is even better!

After school got out for the summer we had a fun weekend at the Phoenix ComicCon being nerdy. Matt met Lou Ferrigno (the Hulk) and William Shatner, Jacob met Jeremy Bulloch (Boba Fett), and we all met Lavar Burton - who was pleased that we were Reading Rainbow fans! :-)  We all had a great time looking at all of the "crazy" people dressed up in costumes and Jacob even won a Ghostbusters t-shirt in a raffle from the Arizona Ghostbusters! It was a lot of fun.

On Wednesday afternoon, the boys and I began our seven week adventure in Georgia. We had a flight on Southwest that I was VERY nervous about because Aaron screamed for the entire 4 hour flight last year.

I did everything I could to prepare. We had plenty of snacks, drinks, his stuffed puppy dog and the iPad loaded with an entire season of Blue's Clues. Overall, he did great. He yelled (happily) during Blue's Clues several times (if you have ever seen him watch an episode of that show you will know this is not unusual) but I much prefer that to the screaming. He didn't start crying until 20 or 30 minutes before the plane landed and by then he was just sick of being strapped down so there wasn't much I could do to calm him down. But I will take that flight over the last few we have taken any day. Hopefully he is getting more tolerant now that he is older and having the distractions that we did helped. However, I still don't recommend traveling with two small children and all of their stuff alone - it is very difficult. But it will be worth it to be able to visit our family and friends in Georgia for the next 7 weeks!

We are thoroughly enjoying a break from the 110 degree + temperatures that we were experiencing in Phoenix. I'll take the humidity over that insane heat any day.

So, if you're in Georgia and you want to see us this summer, let me know!

Sunday, May 6, 2012

Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)

Not the Perfect Mom

Have you ever felt like you just can't catch a break? Like every little thing goes wrong all day long and completely ruins your mood and your attitude? Today has been one of those days for me and it's not even lunch time. Unfortunately, I feel like I have had a lot of those days lately and it just plain sucks.

I want to enjoy my family and my children. I want to be the mom that does fun activities with her kids and keeps a (relatively) clean house and has a good dinner on the table for her family every night. Instead, I feel like the mom who is constantly yelling at her kids and trying to get away from them, almost never provides any fun activities that we can all do together and more often than not feeds her kids lunch meat and cut up fruits and vegetables for dinner while I sit and watch them eat. And don't even get me started on what a wreck the house is all the time. I am exhausted at the end of the day (who am I kidding, I'm exhausted by the middle of the day) and I just can't seem to be the person I want to be.

Today, we got up early to take Daddy to the airport because he had to go to Las Vegas for the week for work. I tried to think of things to do with the kids today to keep them busy so we wouldn't be driving each other crazy. Going anywhere is pretty much out of the question because Aaron doesn't like being confined in his stroller and if he's not in his stroller when we are in public, he will run off and make it impossible to do anything. If he is in his stroller, he screams and cries. So, I am left to think of activities we can do at home. I got him a new water table last week and he hasn't played with it yet, so I thought that would be fun and would probably entertain them for an hour or two.

When we got home from the airport, I filled the table up with water and let Aaron play. The first thing he did was try to climb onto the table like he was getting into the bathtub. It's not a pool, so that didn't work, but it didn't prevent him from trying it about 5 dozen times. When he wasn't trying to get into the table, he found the drain plug and promptly pulled it so all the water drained out. After refilling the table (a couple of times), both boys were playing and getting completely soaked (which is fine - that's kind of the point). But of course every few minutes someone would cry or complain about something. Then a bee showed up and ruined the whole activity since Jacob refused to go anywhere near the table after that. (The bee did not sting anyone, but Jacob was stung by a yellow jacket last year and has been terrified of all bees since then) So that was the end of that activity! It lasted all of about 30 minutes.

So we came inside and watched some Blue's Clues and Phineas and Ferb on Netflix. But the dog also decided to pee on the floor next to me and Aaron stuck his hands in it before I noticed it. Once I cleaned that up and washed Aaron's hands, I noticed he had made a mess with his snack all over the walls, so I had to get out the Mr. Clean Magic Eraser to clean that up and while I was trying to do that, Aaron found his water bottle, came up behind me and started dumping his water on my back. Of course this was hilarious (to him). So now, the dog is outside, the boys are in their rooms and I am trying to convince myself that I can make it through the rest of this day. It's not even noon yet.

So I need some help here. I have all sorts of friends who post on Facebook and on their blogs about how great their kids are and the fun things they do together and how they can't wait for summer vacation so they can spend more time together. How do you do it? (by the way, if that's you, I'm not trying to be mean, I really want to know!) How do you enjoy all that time together without losing your mind? How do you do all of these fun things together and cook dinner and have that perfect family? I have been trying but I can't seem to figure it out, so I need some tips. Are you really as perfect and pulled together as you make it look? People tell me all the time that they don't know how I do what I do and sometimes people even tell me I'm a great mom. I feel like I am trying but I am far from a great mom or at least far from the mom that I want to be.

I'm not writing this because I want a pity party (although I realize that is pretty much what it sounds like) and I am not overwhelmed or feeling depressed. I'm just frustrated with the way things are and I want to make it better but I don't know how. So really, if you have any suggestions or tips on how you manage to get things done and actually enjoy your children, I would love to hear them.

Thursday, May 3, 2012


I like talking about Aaron and his various diagnoses. Not because I like to think about all of his challenges, but because it gives me an opportunity to educate other people about all of these things that they may have never heard of. I have learned so much and done so much research in the past three and a half years and I really enjoy sharing that knowledge with other people. After all, it's the best way to spread awareness, right?

At this point, Aaron has so many diagnoses that it's hard to keep track of them all. I have several notebooks full of medical records and have to keep a file on the computer just so I can keep all of his doctors and therapists straight. At this point (keep in mind, he's only three), he has been diagnosed with Down Syndrome, Celiac Disease, Asthma, Sleep Apnea, a soy allergy, Sensory Processing Disorder, Reflux, Chronic Ear Infections (including three sets of tubes and an adenoid removal) and mild hearing loss. He also sees a cardiologist on a regular basis because he had a hole in his heart (VSD) when he was born. It closed on it's own within the first year of his life but we have continued to see cardiologists on at least a yearly basis for other more minor issues.

However, today we went to the cardiologist for our yearly visit and he said he has no more concerns about Aaron's heart!! Yay!!! He does want us to come back in 3-5 years for one more echocardiogram just to be sure nothing has changed but other than that we are cleared from Cardio!! This might not seem like a big deal to some, but Aaron has a Pediatrician, a Developmental Pediatrician (at the Down Syndrome Clinic in Atlanta), a Pulmonologist, an ENT, an Allergist, a GI doctor, an Orthopedist, an Ophthalmologist, a Pediatric Dentist and a Cardiologist that he sees at least once a year - most of them he sees more frequently than that. And that's not even counting the four therapists he sees every single week! So crossing even one of these specialists off the list is just so wonderful! Obviously I will (and do) take him to whatever appointments he needs but after all we have been through over the past three and a half years, it is amazing to hear a doctor tell me that he is cleared instead of telling me that he has a new, lifelong diagnosis.

Thank you God, for giving us a break today. It has felt like we have had nothing but a string of bad luck lately (and we are still currently trying to figure out his current medical problem, but more on that another time) but today I felt like we got a little relief. And it is oh so sweet. So today we rejoice in being one doctor down. Yippee!

Wednesday, May 2, 2012

Make New Friends But Keep the Old

Last night we had a visit from an old Air Force friend and his new wife as they drove (moved) from Alaska to Texas. We had a wonderful time visiting with Tony and Karen and it made me miss our ABM family terribly. We had such an amazing group of friends when we lived in Oklahoma and we haven't found anything like it since. That's not to say that we haven't found friends in other places, we have and they are wonderful, but this group is special and they will be a part of our lives forever. We have already been spread out all over the world but I hope that we will somehow, someday live close enough together to actually see each other more than once every 3 or 4 years.

I feel like my life gets so crazy that I often don't have time to stay connected to my friends but visiting with Tony and Karen last night reminded me just how important it is to make the effort. They remind me that life isn't as hard as it feels sometimes and that when it does become too much, my friends are there to support me, no matter how far away they live.

Wednesday, March 21, 2012

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.

Thursday, February 23, 2012

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!

Wednesday, February 15, 2012

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!

Monday, February 6, 2012

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! 

Thursday, February 2, 2012

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...

Friday, January 13, 2012

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.

Friday, January 6, 2012

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!