Blessings in Disguise

Yesterday was a tough day for me. I woke up already in an emotional state. I knew why I was like this I just didn't know how to shake it. In just a few short days it was going to be my due date for Dylan, Dec. 7th. All I could think of is what it would be like if I were still pregnant, about to have a new baby. More than likely, Dylan would already be here because I was already planned to be induced again. Yet, still the date was nearing and it was taking it's toll on me.

I felt bad for Bert, he hadn't seen me like this in while. Since the move I had turned a corner and all the sadness had subsided. I knew that as "the day" got closer it would be hard. Another thing looming on my mind was this weird rash Carson had gotten Saturday afternoon. At first I brushed it off as heat rash. When it didn't go away I didn't know what to think of it and when it was still there on Sunday morning I was more concerned. He had been having a low grade fever off and on and some congestion. Most of it I was attributing to teething (molars are coming in). Well, I decided, come Monday morning if it was still there I was going to take him to the doctor. When he woke up Monday it was still there, although it did seem like it had gone away some. Taking him the doctor wouldn't have been such a big deal but this would be his first visit to a new doctor. Back in Fort Myers it was never a problem getting him in. This was a different story. All I can say is thank goodness my sister knows the doctor because after the third try they got us in that day, not in March as they originally wanted to do.

After causing such a fuss, I was a little embarrassed I was bringing him in for a rash and low grade fever. When we finally got back with the doctor and he saw the rash immediately I could tell it was a good thing we had brought him in. He pulled Carson's skin and asked how long he had had this rash. I told him since Sat. afternoon. He said see how it's not blanching, that's not a good sign. That means it's under the skin, broken capillaries. It can be a sign of very serious things such as meningitis or leukemia. He said the good news was that he had it a few days and wasn't severely sick, which would most likely be the case if it was meningitis. He told us if he would've seen Carson the first day of the rash he would've admitted him to the hospital immediately to start IV antibiotics and figure out what was going on. Since he had been alright he wanted us to go get blood work done right away and he would have the results the next day. He prescribed an antibiotic and tried his best to calm our fears. He said more than likely Carson would be back to normal in a few days and it was just some sort of virus causing it. But we needed to make sure it wasn't something more serious going on here, especially due to the fact that there is a higher prevalence of leukemia in children with Down Syndrome. I knew this. It was because of this we banked Carson's cord blood. I was not prepared for another health scare, however.

We went and got the blood work done, picked up Carson's prescription, and came home. It still had not sunk in that this rash could be a sign of something very serious going on in my sweet boy. Somehow, I went to bed fine, but at 2 AM I woke up and all I could think about was what if. I stared at the monitor and watched him sleep and cried thinking about the possibility that he would not be sleeping in his crib soon, but rather a hospital bed. I posted to Facebook what was going on and just knowing that people out there would know we were in need of prayers gave me enough comfort and peace to get a little rest before my little man woke up the next morning.

Carson got up bright and early and I was examining the rash, it seemed like it was fading away even more. I didn't know if this was a good sign, bad sign, meant something, or nothing at all. I had been googling away, it was my best friend and worst enemy. At about 8:30 I got a call from the drs office and heard the most amazing news, all of his blood work came back normal!!! I wasn't expecting a call until the afternoon and to already have my nightmare over was such a huge relief!! It must've just been some sort of virus. Really I wasn't that concerned just knowing it wasn't something so life altering. I felt like I was walking on a cloud after that! I had already gone through it all in my head and this was not the outcome I was anticipating.

Anyways, I guess what I realized is in Carson's health scare I forgot about what was looming. It got me out of my own head and focused on something else. It was a blessing in disguise. I haven't been upset about it all day because just knowing that my son that is here with us is OK was more than enough for me in one day. I can't tell what tomorrow will be like. Whatever it is will more than likely be my own doing thinking about what could've been. I sincerely believe that everything does happen for a reason, and I think this whole scare did. It helped me focus on what is here and now and not think about what was or could've been. Don't get me wrong, Dylan will always be a part of me and I wouldn't change getting to be his mommy and carry him for the short time I got to, but Carson is the here and now and he needs his mommy too. Life doesn't always take us where we think we're heading, but it leads us to exactly where we are meant to be.

Mommy and Carson about to see Santa!! Later this day is when I first noticed the rash.

The rash on Sunday

My poor boy is so embarrassed about me taking pictures of him like this :) This is the type of rash to not ignore!!

My sweet boy trying to make me realize it's all going to be alright :)

This little guy makes everything else melt away :)

Dreamers and realists

So I was just catching up on one of my favorite TV shows, Modern Family. It was the Thanksgiving episode and as always, the end left us with a sweet message about dreamers vs. realists. It gave me goosebumps. See half the family realized they were dreamers and the other half were realists. The ending message was:

"There are dreamers and there are realists in this world. You'd think the dreamers would find the dreamers and the realists would find the realists. But more often the opposite is true. You see the dreamers need the realists to keep them from soaring to close to the sun. And the realists, well without the dreamers they might not ever get off the ground."

That really hit me. It was me and Bert. He's the dreamer with the big plans and dreams. I'm the realist pulling him back to the ground, if needed, and always thinking of what is realistic. I guess we are a perfect match after all, we keep each other in perfect balance. I wonder what Carson will be like, will my realistic thinking infect his brain and he'll never dream big like his daddy. Or will it be hard to keep him on the ground because his dreams will be so big. As much as I think my way is best (as it usually is :), I secretly want him to be a dreamer. I want him to think the sky's the limit and not to let anything hold him down. I guess yesterday was a day of reflection for me. Stevie Wonder was on Ellen and I was telling Carson, he can't see honey, but look at all he's accomplished in his life. He is an amazing musician and an inspiration to so many. I told him, everyone has struggles and stuff that could hold them back, it's what you do with it that really matters. I don't want Carson to ever think that anything is going to hold him back especially the fact that he has an extra chromosome! I may be the realist in this bunch, but I will not ever let anyone or anything hold Carson back from whatever his dreams may be. So here's to the dreamers and realists keep dreaming big and keep remembering what's real :)

That is definitely the face of a dreamer right there :)

Looks like reality hit someone :(

I think we might have the created the perfect balance of dreamer and realist, only time will tell...

Thankfulness

Since it is the month of November and only 2 days away from Thanksgiving I thought it would be appropriate to write about what I'm thankful for :) With the move it has been a while since I've blogged and this seems like the perfect subject to pick back up on.

I'm thankful for......

A good traveling partner :)

 A little angel who is happy 99.9% of the time

That Carson gets to grow up surrounded by loved ones 

That Carson is still at an age where mommy can dress him as she chooses :)

For bedtime (We all need a little break :)

Being a stay at home mom and getting to spend so much time with my sweet boy :)

To have wonderful, amazing people in my life that I can leave Carson with and know that he's in great hands :)

Which means mommy & daddy get a night out, very thankful for that!!!

Three generations of Barnes men

Our awesome "first born" Sammy whose life has changed tremendously since Carson arrived but is the sweetest thing to him anyways :)

That Carson has had such wonderful therapists in his life, that for his last therapy appointment they gave going away presents, including this harmonica which he is determined to figure out :)

That Carson is secure enough in his manhood to rock a pink shirt :)

For such a great dining partner :)

That Carson doesn't let the fact that he's a "model" go to his head :)

That he doesn't have to get shots every day

That he isn't teething every day

This is my Thankful month of November in pictures. 

Most of all, I'm thankful for Carson and the fact that he has an extra 21st chromosome. I'm thankful that God chose us to be his parents and I'm thankful for all the lives that he gets to touch along the way. 

A Perfect Balance

As a woman, we are supposed to be good at everything, wife, mother, chef, maid, friend, etc. We should do all of those things, be all of those things, with a smile on our face and not a hair out of place :) Unfortunately, this is not the world that June Cleaver lived in and for most of us we feel that we fall short in one area or another.
I know that I have put so much energy and focus on Carson lately, especially with all of the health scares, that I maybe haven't been the best wife I could be. While I am still cooking, cleaning, and all the other wifely duties, I feel as though maybe I've checked out emotionally a little. I guess once everything happened with Dylan I wasn't there for anyone. I went through the motions for Carson but I barely had enough to give him. Then things started looking up and I started to heal from that. I finally felt like I was the mother Carson deserved again, she was back :) Now was time to start becoming the woman that Bert married again. Right as I started to work on that we got hit with the whole opsoclonus mess and 100% of my concentration was on Carson. Nothing else mattered when the thought of my child potentially having cancer and chemotherapy was going through my mind. Thank goodness, all is well with that.
There hasn't been a time where there wasn't some "crisis", I guess you could call it, in quite a while. In this stillness I got to thinking, that in the past 14 months since I've had Carson I've been so focused on him and not taken nearly enough time for our relationship. I can't even tell you our last date night and the last time we were out as adults was my high school reunion almost 3 months ago! I guess in all things, the first step is realizing you have a problem. I do. I am addicted to being Carson's mommy!! As much as I love it, I know I need a break sometimes and we need our couple time. As well as just needing some alone time. I'm hoping with this impending move we'll get some more of that. And with all of these scares behind us we can concentrate on just being a family and a husband and a wife.
I guess what I've learned is, while trying to be the best at everything you are going to fall short somewhere. It's all a balancing act and trying to figure out where to put your energy is difficult sometimes. I feel like as long as your loved ones are taken care of than the rest can wait. I don't have to have the perfect house or some extravagant meal when I have an amazing husband and the most perfect child :) Life is good and it's time to start enjoying it!

We'll call these "Pre-Carson" Pics - Me & Bert at Mangrove Mama's down in the Keys. July 2009

Bert & me in Knoxville. Going to see one of Bert's little brothers football games - one of our favorite things to do! Oct. 2009

We brought the Smurfs back into style way before some movie did!! Halloween 2009 :)

The Barnes family (once again pre-Carson :) in Maryville for one of Blake's games :) Nov. 2009

Thanksgiving '09 - my last Thanksgiving of not being a mommy :) Well besides to Sammy!

One of our last outings before finding out I was pregnant :) Cristina & Casey's wedding. Dec. 09

5 Year Anniversary!! And yes we brought our child to eat at a 5 star restaurant with us and he was great! SALT, Amelia Island April 2011

Our last adult night, 10 year high school reunion. August 2011

Life is Always Changing

So, I've been thinking a lot about change lately. It's a constant part of life. You know what they say (whoever "they" are, I'm not sure :), that they only thing you can be certain of, is that everything will change. While some changes are for the good, some are for the bad, and some are just different.
I've been thinking about change because I've also been questioning how I've changed, for the most part, since everything happened with Dylan. I know after Carson I of course changed, I became a parent!! My entire life changed in an instant, definitely for the better!! The way I look at life, the decisions I make, every single thing was different after he was born. It is really hard to remember what life was like before him, and I don't want to!! But, I have been trying to understand how the loss of Dylan has changed me. For instance, I have become a constant worrier. I know I've always worried about stuff but now it is incessant. I can't make it stop sometimes. I know I drive my husband crazy with constantly reminding him of things we need to do all the way to worrying about the way he's driving, it never ends. I've tried to stop it, but it's like it's ingrained in me now. I wish I could remember if I was this bad before, but I'm pretty certain I wasn't. I think the worrying is a way of having control over things. I feel like if I worry and anticipate the worst than I have more control over the situation. I became so used to things that, never in a million years expected to happen to me, happen. I didn't expect to have so many issues in my first pregnancy, I didn't expect Carson to have Hirschsprung's Disease and surgery by 6 weeks old, and most of all, I didn't expect to lose my second pregnancy. When all of these things you never think will happen to you do, it definitely leaves it's mark on you. My husband says that he doesn't know how I can sleep with all the worrying and thinking I'm constantly doing, but for the most part I sleep fine and it doesn't really stress me out. It's like if I'm thinking about it and figuring it out in my mind, I'm content. Very strange, I know, and I might possibly need to be on some sort of meds for it!! :)
Another thing that I'm certain is different about me since Dylan, is that I am very opposed to change now. It's like I want everything to stay the same. I've tried to psychoanalyze this one and it's a little more difficult. I'm pretty sure it's because I feel like the more things change from how they were when I was pregnant with Dylan, the farther away from him I become. It really felt like our world fell apart after Dylan. So many things came crumbling down after that, and it felt like if it could go wrong, it did. In my mind, I kept thinking if I was still pregnant with Dylan everything would be alright. I didn't want anything to change from how it was when I was pregnant with him.
Lately it has really hit me because we are about to make a big change and it has brought a lot of this stuff up. We are going to be moving from LaBelle over to the Stuart area. It's something we've been wanting to do for years to be closer to my family and our friends and the right time has just kind of presented itself. While it is very exciting to be closer to my family and not have to travel as far for doctor's appointments and therapy, it is extremely bittersweet. I have had numerous nights laying in bed crying, heartbroken to leave Carson's pediatrician, therapists, and my ob/gyn that delivered Carson and Dylan, not to mention Bert's family, our friends, and amazing neighbors. We have been through so much with all of them and love them like family. I have been extremely conflicted on what to do. I know for our emotional health and happiness moving will be great. It will be a fresh start after all we've been through. Plus, we are over at my mom's almost every weekend as it is, so now we will be this much closer to them. But it breaks my heart to leave such amazing people. In the 14 months that Carson has been here, we have become extremely close with all of these people and I know they love Carson as if he was their own. I just feel like this will be best for us and I promise to always stay in touch with these wonderful people and visit them whenever we are in town :) We are going to keep all of Carson's specialists in Fort Myers so we will be over every 6 months to a year and Bert's family still lives over there so it's not like we're gone forever. It will still be hard to leave what we have known for such a long time.
The emotional part of moving has been difficult to get through, we will be leaving our home that we have gone through so much at. We have had extremely high high's and crushingly low low's. I know I try to stay as upbeat and positive as I can on here and I do know that this will be good for us and change is good, it's just brought up so many emotions. I am a very sentimental person, even getting a new car is emotional for me, so you can only imagine what the thought of moving out of the house you've lived in for the last 5 years is doing to me!!
This will be the start of a new chapter in our life and while it is exciting and new, I never want to forget where we came from and what brought us here. Hopefully I can become a little more carefree as more time passes and not worry quite as much. I've already started to make a conscious effort to work on it :) It's amazing how a move, used to just be a move, but once you have kids so much more goes into it. All in all, I know this will be great for Carson and give him more opportunity than where we are at now. There is an amazing Down Syndrome Awareness group nearby and the community is really accepting and understanding of Down Syndrome. I am a ball of emotions with all of this and how I feel about it varies by the hour, but the overall feeling is excitement!! I'm trying to embrace change and know that no matter where we are Dylan will always be with us.

The day I became Mrs. Heather Barnes :) 4/15/06

Graduation from FGCU, 12/08

25 weeks pregnant, 5/10

Leaving to go to the hospital, the best change we could ever encounter was about to happen!!! 8/19/10

Our first home as husband and wife and the only home Carson has ever known!

First picture of us in our new roles in life, mommy & daddy :)

Robert Carson Barnes - my world :)

Dylan Anthony Barnes

Little Delays = Cherished Moments

When I found out Carson had Down Syndrome I wasn't really sure what to expect. I read up on everything and found that it really varies from mild to severe. I wondered what that would mean for us. Luckily, this was my first child so I didn't have anything to compare him to. Once I found out, I decided I wasn't going to stress on what is "normal" and not to put pressure on Carson or myself if he isn't doing everything right on track. I decided I was going to raise him as I would any child, just give him the extra care and attention where needed.
Since he's been born I've gotten the chance to experience all of his milestones thus far, and let me tell you they are so amazing!! He is so determined and works so hard to accomplish each goal, and yes it does take him longer due to his low muscle tone. Also, each night he spent in the hospital or going to and from doctor's offices took away from him getting to work. Those setbacks aside, he is doing great! It took us a lot longer to reach those milestones, but it meant I got to cherish each of those stages in his life for even longer. He got to be my cuddly little baby longer than most and for that I am eternally grateful.
Holding his head was the first big task and it felt like he would never accomplish that! Even around the beginning of April Carson was still a little bobble head (it was SO cute!). The next big accomplishment was sitting on his own. He was doing pretty good around 10-11 months old and finally around his first birthday he finally got it. And once he was, he had the most perfect posture to go along with it! He makes me want to sit up straighter.
Now, at almost 14 months we are working on crawling. He has almost mastered getting into the sitting position from laying down. He also is starting to do a little pulling up.
Carson has therapy twice a week. We take him to speech and occupational therapy once a week and then the physical therapist comes here to the house once a week, as well. He doesn't just get to play, all of our play has a goal motivated behind it. Of course I do let him have some time where he can do whatever he wants when he's playing, but most of the time we are doing "playapy" :) That's what I like to call therapy so he doesn't think it's work. He is so determined and so motivated. He does protest but I would too if I was doing core exercises for an hour!
It's hard sometimes to not notice what other babies Carson's age or younger are doing, but he'll get there, it will just be at his own pace. He isn't not accomplishing his goals for lack of hardwork. And some days I feel like I'm not doing enough. Have we worked on enough today? I should be doing this or that with him. But then I realize, there are only so many hours in a day and as long as I'm giving him love and doing as much as I can, that's all I can do :) I'm sure all moms, not just those with a child with special needs, feel that way sometimes. And yes, sometimes people think Carson is much younger than he is, but that just means he's still my baby :) We also get asked often is he walking yet, we simply answer no, not yet ;) We live in a world where everyone is trying to keep up with everyone else. There's a competition for who's the best at everything. I just exclude myself and Carson from all of that.
While most babies are on the freeway whizzing past each phase on their way to growing up, Carson is taking the scenic route. He'll get there eventually, but he's going to have a much slower ride, with a prettier view too :) I'm glad I'm along for that ride with him and I wouldn't change it for the world.

Brand new Carson!!

1 Month Old and in his favorite spot, his newborn lounger :) Miss these times!

2 Months old and cute as a button :)

Carson and his daddy on his 3 Month Birthday!!

4 Months old & the cutest Santa around :)

5 Months old :)

Spending his 6 month birthday in the hospital :(

7 months old & happy as can be :)

First Easter and just over 8 Months old. Also wearing his first of many Caton's Closet creations :)

9 months old and so adorable :)

A few days shy of 10 months old and wishing Daddy a Happy Father's Day!

Mommy & Carson at 11 months old!

Carson's First Birthday and sitting up like a big boy :)

13 Months old, perfect posture, and at his favorite place...The Beach :)