Good Riddance

I cannot wait for this year to come to an end...I am determined for 2013 to be better!!  It has been one heck of a roller coaster ride to say the least.  All the ups and a lot of downs in my personal life have me exhausted; not only physically, but mentally as well!  I am overloaded with thoughts right now as I reflect back on this past year.  The majority of them still leave me scratching my head!

If what doesn't kill you makes you stronger, then I feel like Super Woman!!  It did take me a long time to get to that point.  I truly felt like there were days when I just could not possibly take any more.  There is no denying that I questioned why I was having to deal with the things I did and I still haven't gotten answers for all of them.  However, I have come to the realization that I might not ever figure it out. 

I found myself constantly searching for encouragement and anything positive I could cling to.  One day I came across a quote (on Pinterest of course) that pretty much sums it up for me.  It says, "Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom."  I feel like maybe I wasn't living the life I was meant to live.  Through all the troubles I faced I found myself building a stronger relationship with Him.  

In building that relationship I began to see the positive in things and tried my best to weed out the negative.  I am pretty sure it is safe to say that will be one of my New Year's resolutions.  I am determined to stay positive.  I still have the hardest time when I see other children Braylon's age and what they are accomplishing.   Although it never seems too long after that I notice something that shows me it could always be so much worse!

In staying positive, the things we work the hardest for are a lot more rewarding than those that come naturally.  So when I post a picture of Braylon sitting straighter in a high chair and finally drinking from a sippy cup, I can really be a proud Momma!!  We worked pretty dang hard to accomplish those things!! You can betcha that we are going to keep on working that hard too.  I just know 2013 is going to bring great improvements!!

With 2012 coming to an end I can certainly say, "GOOD RIDDANCE!!"  I am looking forward to what 2013 has in store for us.  For those of you following our journey and asking how things are going, Braylon's milestones are listed below.  Thank you for continuing to support us with all your positive and kind words!

He can now say several words (although not on command):  Bye-Bye, Dada, Mama, Hey

He clicks his tongue - A LOT!

He spits when he doesn't like something

He shakes his head NO

We play peek-a-boo

He is working on pincher grasp instead of whole hand

We drink out of a sippy cup - YAY!!

He rolls to whatever he wants to get in to

As far as sitting, he still cannot control his balance and has low muscle tone

We are now working on standing and building those leg muscles

He finally supported a little weight in his arms in the crawl position just recently

Hopefully more to come soon!!

Tied Hands

When you search "my hands are tied" online you come up with something like this...not free to behave in the way you would like to.  I had my first true experience of that recently!

As some of you know, I recently had back surgery (another medical expense to add to our growing list).  My mom had kept Braylon during my post-op recovery.  I was so ready for him to be at home with me.  I knew I would not be able to hold him or pick him up for a while.  I just didn't know that would be harder on me than him not being around.

Maybe it's the good meds (lol) or just this time of year that has my emotions on edge, but when he first saw me his immediate reaction was to reach for me.  Knowing I couldn't grab him up in my arms made me lose it!  That was almost worse than the post-surgery pain I was feeling.  I sure wasn't prepared for that reaction!

I've never had a feeling quite like that...I was so helpless!!  I am normally very hands-on with him and not able to give him a big squeeze broke my heart!  Now that he's back home I find myself just staring at him and watching his every move.  I want so bad to get on the floor and play with him like we normally do and I cannot!

There are many days when I feel so tired and want to give up, but moments like that make me realize how special he is to me.  He has my heart and that day he made me fully aware of that!  I am now looking forward to a couple of weeks from now when I can hopefully return to my full-time "Mommy Duties."  Not to say a little break isn't nice every now and then!

Happy Birthday to Our Ray of Sunshine

On the eve of Braylon's first birthday I find myself needing to write again.  So many emotions are surfacing, and I am not really sure where to begin.  This year has brought us so many ups and some downs. But most important of all, it has shown me I am much stronger than I gave myself credit for.

I was chosen to be Braylon's mom; God must have known it was just what I needed to find out who I am.  It took a little while for me to see things this way, but that is what keeps me going.  There are still days when I have to remind myself that He has trusted me with such a special gift though.

Sometimes I get so discouraged after seeing other babies his age hitting all their milestones and accomplishing things.  I know you "aren't supposed to compare," but in today's society with all the technology it is kind of impossible not to do so.  Although, I am guilty of posting way too many pictures and updates myself!

I watch Braylon struggle lately, as he wants so badly to be more mobile.  He gets so frustrated when he can't crawl to grab a toy that rolled just out of his reach.  This breaks my heart as a mom, because I just want to help him and I can't.  I catch myself wanting to grab it and hand it to him, then I have to stop and remember I shouldn't.  He needs to be pushed sometimes...tough love, right???

Well let's just say that's tough love in more ways than one!  It is not easy to watch him struggle and fuss because he can't do something.  In those moments I am reminded why he is my child and not someone else's.  I have always been known for my patience and laid-back personality.  Those traits are tested on a daily basis with him, and most of the time they come through.

All that to say, Braylon has improved...he has done so many new things and continues to do so.  He now says "DaDa" and "ByeBye" and some form of "Hey" (maybe not all in context, but it's a start)!  He has conquered rolling all over the place and he even sat on his own for a few seconds the other day.  He has started standing up with a good bit of assistance, which he really seems to like.

I have to hope that my patience I mentioned earlier doesn't wear off anytime soon.  We still have a long road ahead.  Our next step is for us to have genetic testing done.  This might tell us if that is what has caused the DWS.  I am still trying to reach out to people dealing with this syndrome.  Please pass this on!  It has been mentioned that Lifetime TV is doing a series on rare genetic disorders, possibly including DWS.  This would be awesome considering the number of people who have no idea what it is.  I was definitely one of those!

Thank you all for continuing to read my posts and sharing our journey! It means more than anyone can imagine to have such an amazing response. I can't forget to say Happy Birthday to most awesome little boy!  He has brought so much joy to our lives and I am so thankful God thought I was strong enough to be his mom!  Please continue to keep him in your prayers...I am a firm believer in miracles!

Don't Stare Too Long at a Closing Door

October is here!! That means we are that much closer to Braylon's 1st Birthday.  I cannot believe how fast this year has gone by.  Planning is underway for a birthday party full of fall festivities!!  As his first year draws to a close I think back on all we have been through leading up to this point and what lies ahead. 

Parents never want to hear there is something wrong with their child.  It kind of feels like someone just walked up out of the blue and slapped you across the face, "how'd ya like that??"...mixed with a little stomach Twister, "small intestine - blue!"  On top of that you add all of the emotions and whew, it's very overwhelming!!

The next step is to try and process what you have just heard and think of every possible question you can.  Of course the doctor asks if you have any questions and it takes you like 10 minutes to respond (you always think of the good ones once you have walked out the door).  Then you get home and immediately start researching!!

Many people have asked me how I have stayed so calm through all of this.  Well here is the truth...I have not!! I stay strong when I need to be, but I have my moments of weakness too.  It took me a little while to wrap my head around all of this.  I kept questioning why this would happen to us as parents and wondering how we were going to get through it.  A friend of mine helped me to put it all into perspective. 

We were talking shortly after Braylon's first trip to the neurologist and discussing what the doctor said.  She informed me that we were special parents, and not everyone was cut out to handle this.  After talking with her for a little while longer, I felt a bit of relief for the first time since all of this began.  It was so simple, yet so fulfilling.  I then knew why we were chosen as Braylon's parents.  This was just all part of God's plan!!

From that moment on I have been determined to take everything one day at a time and keep a positive outlook.  We are never given more than we can handle...although sometimes I have to remind myself of that!!  Each day is different and some are better than others.  I won't bore you with all the minor details, but every time Braylon does something new or reaches a milestone it gives me that much more hope that he will conquer this!!

Side note...I LOVE QUOTES!!  A lot of my inspiration comes from them...If you are wondering about this post, it came from the following:

"Sometimes we stare so long at a door that is closing that we see too late the one that is open."

The Sunrise - Braylon from the Beginning

After trying for a while to have a baby with no success, we decided to see the fertility doctor.  I am pretty sure God was laughing the day we went to our appointment; little did we know, we were already pregnant!!  We would later find out we were having a boy, which scared me because I had know idea what to do with one!

The first 7 months of my pregnancy were perfect.  Then the blood pressure decided to put a quick stop to that.  At about 35 1/2 weeks we went in for my check-up and we were told we were having a baby that day!  So many emotions were flooding over me.  We frantically called our families, who were 8-9 hours away, and told them the news.  They literally threw things together and were on their way!

The next part gets a little fuzzy due to that not-so-wonderful thing called magnesium.  Boy, was that rough!!  After around 14 hours of trying, they came in and performed an emergency C-Section because Braylon's heart rate kept dropping.  He was born at 4:03 in the morning only weighing 4 lb 9 oz (he was so tiny).  We were worried about him having that "Wimpy White Boy" problem everyone refers to.  He proved us wrong from the start!

He was a fighter, even scoring a 9 out of 10 on his Apgar and never having to visit the NICU.  This little boy was born to beat the odds...I just know it!!  We brought him home only a few days later.  We did have to make several trips to the doctor in the following weeks for check-ups.  He never showed any need for concern!

When Braylon was about 3 months old he was hospitalized with RSV.  It wasn't too long after that we decided it was time to move home and be closer to family.  We are so glad we made that decision; we could not travel this road alone.  We moved home when he was around 6 months old.  We could tell he was a little behind with his milestones and at each monthly check-up we would talk to the doctor about his progress.

At his 8 month check-up we decided to start Physical Therapy with him.  We are so lucky to have been sent to some awesome people for this!!  By 9 months the doctor was a little concerned that he still was not meeting his milestones.  She referred us to a pediatric neurologist to do some further testing.  This of course was very scary for the entire family!  We met with him a couple weeks later and did not like the news.

After the neurologist spent some time with Braylon he used the term Cerebral Palsy for his symptoms and he scheduled a MRI to determine his findings.  We decided to get a second opinion just to "make sure."  Off we went to New Orleans to see a doctor there.  He too agreed with the first opinion.  It wasn't what we wanted to hear, but we knew we would do whatever it takes for him!!  His MRI was scheduled at home so we came back and prepared.  It was not fun to have a starving 11 month old waiting all morning, but we survived!! 

A week later we met with the doctor to go over the results.  This was a tough one...it definitely made the reality of everything set in.  He informed us that there are portions of Braylon's brain that did not form properly.  It had nothing to do with the prematurity, just something that can happen with no medical reason.  He explained how early on the brain starts developing to reassure us of this.  We left there with the diagnosis of Dandy-Walker Syndrome and so many unanswered questions.

The doctor said all babies are unique and there is no way to predict Braylon's future.  He did tell us we have an advantage because of his strong personality and ability to interact with others around him.  With that being said, we are keeping a positive outlook and praying for the best. The brain can train itself to do things a different way and avoid using those missing parts.  That is what we hope can happen for Braylon. 

He has a very special gift, as many of you know.  He can truly brighten anyone's day with just a smile.  We might be partial, as most are to their children, but I think there are plenty of people to back us up!   I have known for some time now we were meant to do something with this gift.  I hope that through this blog we can reach out to many people and inspire them in someway.  That is our calling and we are determine to adhere to it!!!

Keep Your Face to the Sunshine and You Cannot See the Shadow

Where do I begin...I have had this feeling that I am supposed to tell my story (pretty sure it is a God thing).  It has been nagging at me for a few weeks now.  After much thought and consideration, here it goes. 

This is my story of our Little Ray of Sunshine, Braylon.  For those of you that know him, you know why I call him that!!  He has recently been diagnosed with Dandy-Walker Syndrome - a brain malfunction where portions of the brain are absent.  Sometimes it just helps to talk to someone and get things out in the open.  I thought the best way I could do this would be through a blog.  This way I can keep friends and family informed and possibly even reach out to others with this diagnosis.

I have been racking my brain trying to think of a good title for this blog.  I wrote down words that described Braylon and decided to look at some different quotes.  As I was reading through my descriptive words, sunshine stood out.  I then came across the quote, "keep your face to the sunshine and you cannot see the shadow."  As crazy as it may seem, this was in my fortune cookie just last week!!  At the time I wasn't sure what to think of it...well, now I know.

It hit me like a ton of bricks, that was the perfect title.  The more I thought about it, the more it made sense.  Braylon truly is our Little Ray of Sunshine.  He will brighten anyone's day with his smile, and not to mention that hair!  That red hair is definitely a conversation starter.  The down side is the shadow, what I consider this diagnosis to be.  However, if we can all focus on the positive, we will get through it!

My goal is to document his journey through this.  I will try my best to keep up with it all as much as possible.  I have great intentions, as I know most bloggers do!  I will try to start with a back-story from the beginning and get everyone caught up to date.  I am looking forward to sharing this with all of you!!