Tag Archives: freshly pressed

Braxton’s 2nd Birthday

Happy 2nd Birthday, Braxton!

Happy 2nd Birthday, Braxton!

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. ūüė¶ 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.

Leave a comment

Filed under Family, Kids and Family, Life, Special Needs Child

An Ode to Dad

Happy Father's to Braxton's Dad!

Happy Father’s Day to Braxton’s Dad!

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!

1 Comment

Filed under Family, Life, Special Needs Child

Wordless Wednesday: Summertime Fun


Enjoying the pool on a nice summer day.

Leave a comment

June 12, 2013 · 10:19 am

Reflections on the Journey

Today was a pretty exciting day for us! A while back, our friend, Dr. Mary Elizabeth Parker of U.R. Our Hope asked us to be on a Blog Talk Radio Show with Hari Khalsa to talk about how the journey changes once you finally have a diagnosis. We were also able to contact KXAN to help promote the radio show and also give them an update after our visit back in February.

We were scheduled to be on KXAN today, but unfortunately the station was covering the French Open and wasn’t able to have a noon newscast. They asked us to come in anyway and we taped our segment instead. It will air Monday, June 17th!! As soon as a link is available, I will post it. But again, the staff was so incredibly nice and it was a great experience.

KXAN Anchor Brian Sanders, Me, Brax, Aileen, Dr. Mary Elizabeth Parker, and Hari Khalsa

KXAN Anchor Brian Sanders, Me, Brax, Aileen, Dr. Mary Elizabeth Parker, and Hari Khalsa

We did go on with the radio show as planned though! Hari Khalsa, The Healthcare Whisperer, is a Nurse Practitioner and Patient Healthcare advocate and her radio show features patient stories about navigating the healthcare system. In the past, she’s interviewed some of the other families in U.R. Our Hope about their undiagnosed journey and of course Dr. Parker about the organization in general. Today’s show was about how that journey changes once you finally have a diagnosis. Myself and another mom I’ve met through U.R. Our Hope had a chance to share our stories and what the journey has been like for us since getting our diagnosis. This was such a wonderful opportunity and I’m so grateful to Hari for having us on and to Mary Elizabeth for thinking about us to be on the show.

You can listen to the show in it’s entirety by clicking this link or listening below! The show is an hour long, so you can definitely bookmark it and come back, or save it so you can listen while you’re stuck in traffic.

Listen here!!


Filed under Life, Special Needs Child

Siblings Have special Needs Too!

This is copied over directly from Big Sister’s Site – I felt it was important enough to cross-post the entire entry.

Big Sister, Aileen

Big Sister, Aileen



Aileen: “Mom, Why didn’t you tell me?”

Me: “Tell you what?”

Aileen: “Why didn’t you tell me that when you had Braxton, you wouldn’t spend any more time with me?”




Ugh. Talk about a punch to the gut. Or a slap to the face. Or anything else you can think of that’s incredibly painful. I’m already hard on myself as a mother, but when your almost 7 year old says this out of nowhere, you sink to an especially low place.

I don’t at all think that I’m a bad mom, nor do I think I’m perfect (obviously). I’m only human, and we all make mistakes.

This conversation happened last week, and up until then, everything had been going great. ¬†We had been struggling with Aileen acting out because she felt left out of the picture with all of Braxton’s issues, so we truly made a concerted effort to REALLY involve her more. ¬†I signed her up for T-Ball even though I had no idea how I would fit it in, and so far it was definitely a great decision. ¬†I try really hard to give Aileen my complete, undivided attention when brother is sleeping. ¬†I make a HUGE deal out of her accomplishments and all the things she gets to do that little brother doesn’t get to do. ¬†And still, she hit me with this.

Really, what it comes down to, is Aileen is only 6 and doesn’t truly understand that I’m not “ignoring” her on purpose. ¬†It’s also the “nature of the beast.” The feeling of being the forgotten child is almost inevitable when you have a “typical” child and a child with complex medical needs. ¬† As parents, we fail to see that BOTH kids actually have special needs. ¬†Braxton has all of his medical needs and Aileen has a need to feel important and special in any way possible. ¬†It’s easy to become consumed in the constant string of appointments and therapies and phone calls to this doctor or that doctor and our poor “typical” kid is left to fend for themselves because we think “Oh, they can take care of their self, they don’t NEED me like my other kid does.” But, the fact of the matter is they do.

Siblings have an overwhelming need to feel appreciated and recognized. ¬†It’s easy to get lost in the shuffle, so parents have to make a true effort to remind them, they too are special and wanted and loved. ¬†Sure, it’s silly to say that, but to a 6 year old, they NEED to hear that. Even if you had 2 perfectly healthy kids, the older child still needs reinforcement that mommy and daddy don’t love her any less than they did when it was just her and no baby around.

This is all still new to me, and I’m learning everything as I go. ¬†There is definitely no manual, but here are some of the things I’ve learned from Aileen about recognizing the special needs of siblings:

  • Dedicated time without siblings¬†– it’s important to take time out of each day to sit with your child and give them your undivided attention. ¬†Schedule 15 minutes a day (or longer if you can). Maybe right when they come home from school to talk about their day and just hang out. Maybe before bedtime to talk about the day and read an extra bedtime story. Make sure the other sibling is in bed or taking a nap so your sibling child has your full attention.
  • Mommy/Daddy Dates¬†– Make a date with your child! Yes, a date! Arrange childcare for the other child and take your kiddo out somewhere special where it’s just you and them. The park, a picnic, a movie, out to eat – let them choose!
  • Extracurricular Activities¬†– Sign your kid up for a sport, dance class, gymnastics, anything at all! I wasted too much time thinking well we don’t have time for ___ because Braxton has this or that. Or caught myself telling Aileen we couldn’t do something because of Braxton. Well, naturally there would be resentment there if it’s HIS fault she can’t do something. ¬†I try really hard to avoid phrases like that now so she doesn’t resent him.
  • Involve them!¬†– This one is easy to forget. Siblings usually take great pride in being “big helpers,” so let them! Ask your therapists to include them in a session or ask your therapist to teach your sibling a special exercise that he/she is responsible for making sure little brother/sister does everyday.
  • Praise, Praise, and More Praise¬†– Always, always, always praise your child for doing something great. Whether it’s helping you out with their sibling or doing great in school. ¬†Do not forget to celebrate their accomplishments too! We also make a big deal out of getting to go spend the weekend with grandma. Brother doesn’t always get to go because he has appts or needs special care, so it makes Aileen feel extra special when she gets to do something cool without her brother.
  • SibShops¬†– This is one I’ve looked in to, but haven’t been able to do. SibShops are special workshops for siblings of children with special needs. ¬†They allow kids to meet other siblings so they can share their feelings about special needs and anything else on their mind. ¬†The workshops have lots of activities to help support siblings and foster relationships between one another. Most of the ones I’ve found say they start at age 8, so it may be a while before I get Aileen in on one, but I’m for sure going to do it.
  • Pen Pal¬†– This is something I literally JUST signed up for. ¬†A couple of teens who each have a sibling with Rubinstein-Taybi Syndrome (which is¬†what Braxton has) have been Pen Pals for years and have become great friends. So much so, that the young man’s parents allowed him to fly down to Texas (from Massachusetts) to escort his pen pal to prom. How cool is that?! Well, they decided to take it upon themselves to create a system of assigning Pen Pals for siblings of kiddos with RTS. I asked Aileen if she would be interested and she was so excited, so I sent over her info. ¬†She was matched up with a little girl in California, so we are now anxiously awaiting that first letter! I can’t wait to see how this turns out.
  • Cards for Siblings¬†– Another thing I JUST signed up for! I found¬†Alayah’s Cards 4 Siblings¬†on facebook. A few moms got together after one of their daughter’s started feeling left out that her brother was constantly getting attention and receiving so many gifts. ¬†Their goal is to send the siblings something to make them feel special too! ¬†A card on their birthday, a letter every so often to remind them of what a great big sister/brother they are, just something simple. ¬†And I know that that small gesture can go a long way. ¬†Please visit their page and consider sending them donations of cards and other supplies!
I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

Trust me, I do NOT have this all figured out. ¬†Even doing all of the above, I still hear the occasional “you ¬†love baby brother more than me” and it stings a little bit more each and every time and sends me in to a ball of tears. ¬†In the past few months, I’ve really put forth an extra effort to do all the things I know to do, and we have seen an improvement in Aileen’s behavior and attitude at home, which is fantastic! We still have some rough days, but I will keep learning from Aileen as we continue on this journey together.

If you have any genius ideas, I’d love to hear them! I’m willing to try anything! Share them with me in the comments.


Filed under Family, Kids and Family, Life, Special Needs Child