Monthly Archives: June 2013
Braxton will be 2 years old tomorrow! Today, we had a few friends and family over to celebrate with us. He wasn’t quite himself today though. 😦 I’m not sure if he is coming down with something, or if he was just overwhelmed with everyone. Nevertheless, we had a nice day. We set up an inflatable pool for Aileen and some of her friends. Braxton slept through the first part of his party or he would have been in the pool too! When he finally woke up we did cake and presents. He got lots of goodies!
I still can’t believe Braxton is 2 years old! The past 2 years have been incredible and crazy all at the same time. 2 years ago we were told our son wouldn’t live for 2 weeks and we had no idea what the future held for him and for us. Now, we have a diagnosis, a better idea of what his future might hold, and so much more hope. So many things we thought he would never do, we now see him trying to do and know, that in time, he WILL do them.
At 2 years old, Braxton is developmentally about 10-11 months. He definitely has crawling down! He is all over the place. He is pulling to stand pretty much every chance he gets and will even hold on with one hand, or bend and stoop from standing and get himself back up. If we hold his hands he will take a few steps before he drops down and crawls off instead. He is cruising furniture a little bit and able to transition from one object to another while standing without losing balance. Braxton is still babbling and making a lot of sounds. Just because the research says he won’t talk, doesn’t mean we will stop trying to get him to talk. We talk to Braxton ALL the time, sign to him the signs that we know, sing to him, give him toys that play music and he is responsive! Braxton is even doing really well with the iPad! He used to bang his head on it or try and eat it, and now he is finally using his hands instead of his head or mouth. This is great since we will be considering a communication device for him. It’s so nice to see everything clicking for him.
Happy 2nd birthday, little man! Keep on writing your amazing story, I know you will continue to surprise us all.
A few weeks ago, we visited KXAN here in Austin, but our interview was preempted by coverage of the French Open so we recorded the segment and it was to air on the 17th. Well, then there was a little mishap and our segment got erased. Instead of just moving forward, the producer called me personally to apologize and so graciously invited us to come back and try again.
So, this past Wednesday, we visited KXAN studios again, this time to do our interview live. We are so grateful to our friends at KXAN Austin News for allowing us to share our update on Braxton’s diagnosis and to talk a little about U.R. Our Hope, the organization who has been walking with us every step of the way along this journey. Dr. Parker, the medical liaison for U.R. Our Hope and our Physical Therapist (they mixed up her title on the video) joined us in our interview.
Here is the link to the full story on KXAN: Parents triumph in toddler’s diagnosis
And here is the video!
Being able to share our story has been so incredible because of the awareness that has been raised. There are so many people who don’t know that a child CAN in fact go without an actual diagnosis for so many years, that a child may NEED a feeding tube to survive and thrive, and they may have never even heard of Rubinstein-Taybi Syndrome. Heck, there are some physicians who have never heard of it! So, with every person that reads our blog, visits our Facebook page, sees our news story, there is something so much more happening. Every view is one more person who can say “Hey, I’ve heard of that” or “Oh, I saw this child on the news with a similar situation.” when they or someone they know finds themselves in a situation like this. We had no idea until it was all thrust upon us, and now we want to be able to share our experience so that we may help others.
This journey can be incredibly rewarding, but it is without a doubt difficult at times. We want to make sure others know that they aren’t alone. You don’t HAVE to walk this path by yourself. Find a support group. Reach out to a parent who’s “been there.” Trust me, it makes all the difference in the world when someone can reach back and say, “Hey, I’ve been there too and I know exactly how you feel.”
Today, we celebrate all of the wonderful fathers in our lives for all the love, support and awesomeness that they bring in to our lives.
Dad is usually the go to guy when it comes to having fun, and in our house it’s no different. Joseph is definitely the funnier of the pair and he has an amazing ability to keep all of us smiling and laughing. There is something about watching a man get down on the kids level and act like a complete goofball that makes you fall in love with him all over again, just when you thought you couldn’t love him anymore.
Over the past few years, Joseph has been an amazing stepdad to Aileen, taking her in as his own. And then when we had a child together, much to our surprise, that child was born with a load of medical issues that would forever change the path we had set forth for ourselves.
There are many men who would have turned and walked away. It’s a very sad story, but having a child with special needs strains a relationship to the brink of destruction. And yes, it was difficult for us at times, but from day one, Joseph was there by my side. He followed the ambulance as Braxton was transported to NICU at another hospital and talked to the doctor as Braxton was admitted. He held it together when I was falling apart. He heard the doctor say Braxton wouldn’t make it 2 weeks, but held it inside because he knew it would devastate me. He drove us to the hospital every day and sat with Braxton for as long as I wanted to be there. He was there when Braxton had his first surgery to get his G-Tube placed holding my hand and telling me it would all be ok. Scared as we were, he learned everything he needed to take care of Braxton. Thankfully, with his job, he is home for at least a week at a time and instead of sending Braxton to daycare during that time, he keeps Braxton at home with him. That extra bonding means the world to both of them and I’m so grateful that I have a man willing to do that. He has such a big heart and is truly an incredible father.
People always tell me how strong I am and ask how I could do all that I do, and the answer is that I don’t do it alone. Joseph is my other half and it is with him that I am able to do all that I can. Sometimes he doesn’t get enough credit for being the great dad that he is. He helps me like you wouldn’t believe, whether it’s cooking dinner or doing laundry, or taking Braxton to the doctor so that I can go to work for at least part of the day. He takes Aileen to practice t-ball, takes her to the park, or just sits and wrestles with her when she wants to be silly. I may be the face and the writer, but behind the scenes, my partner is equally as awesome.
Today and every day, I am thankful for the man who has been put in my life to be my partner through all the ups and downs life has to give us. Together, we have faced the most difficult of times and have come out stronger than ever before. Raising a child with special needs is definitely not easy, but when you have a partner to help you through it all, it sure makes the road a little less bumpy.
So today, I wish Joseph and all the amazing fathers of children with special needs a very Happy Father’s Day! Sometimes you don’t get the credit you deserve, but trust me, it does not go unnoticed. Mom’s around the world thank you for all that you do. Keep up the great work, dads!