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!
Thursday, October 18, 2012
Monday, October 1, 2012
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."
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."
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