Tag Archives: thanksgiving

We Are So Thankful

The season of thanks is upon us once again and we have so much to be thankful for this year. Along the journey, we have learned to be thankful for everyday and grateful for all of the little moments throughout the year. As we reflect upon the last year, one thing stands out most; progress. We are so thankful for progress. Braxton has accomplished so much in a year and what once was very slow progress, is now exploding in so many ways.

This time last year, Braxton took his first unassisted steps and at most walked about 10 steps on his own. He was eating 2-4 ounces per day. He had no words and minimal sounds. Though progress was slow, there was, in fact, progress. Braxton can now walk unassisted, albeit a bit wobbly, an entire city block.

He’s on his feet more than he crawls around. He eats nearly 16 ounces every meal and you’d never guess there was ever a time he couldn’t or didn’t want to eat. He still has no words, but he is so much more vocal these days. Thanks to technology, he now has a voice through the Augmentative and Alternative Communication (AAC) app, Speak For Yourself on the iPad. He’s learning everyday how to use the app to communicate with us.

Braxton pointing and telling me he wants to eat on SFY.

Braxton pointing and telling me he wants to eat on SFY.

His dexterity, focus, and fine motor skills are still slow to come, but he is so much farther along this year.

Braxton learning to string beads

Braxton learning to string beads

These are huge accomplishments for Braxton, but there are also so many little things we are thankful for this year.

 

 

We’re thankful for the coos and babbles that wake us before the sun, because it means we’ve been granted another day.

We’re thankful for the extra minutes of rest we can steal when Braxton will snuggle in bed with us.

We’re thankful for the sweet smile and not-so-gentle pat on the back that says, “Wake up, guys!”

We’re thankful for the sweet way Braxton pulls you close for a hug and rests his head on your shoulder.

We’re thankful for the way Braxton pulls our arm back around him when the hug wasn’t quite long enough.

We’re thankful for the look Braxton gives when he recognizes you and the way his eyes light up and his beautiful smile crosses his face.

We’re thankful for the way his whole body tenses up and he shakes with excitement, or kicks his little legs.

Big Smiles

We’re thankful for silent way Braxton says “I love you.”

We’re thankful for the incredible sibling bond he shares with his amazing big sister.

A sibling love that cannot be broken.

A sibling love that cannot be broken.

We’re thankful for the messes Braxton makes, because it means he’s mobile and independent.

We’re thankful for the countless hours of therapy that have helped Braxton along the way.

We’re thankful that we are down to seeing our specialists once a year.

We’re thankful for Braxton’s good health as of late.

We’re thankful for the sweet moments in parenting that melt away bad days and tell us we must be doing an alright job.

Sleeping

We’re thankful for therapists who have been in our home since Braxton was 8 weeks old. Their tireless work with Braxton goes far beyond therapy. They love and care for our sweet boy and share in our pride when Braxton reaches a goal. Braxton is not just a patient or a paycheck to them. We have been extremely blessed.

We’re thankful for wonderful teachers who have joined our team this year and have already fallen in love with Braxton. They have such a love for all of their students and we’ve seen such progress since Braxton started with them in August.

Braxton walking with his teachers

Braxton walking with his teachers

We’re thankful for the tantrums Braxton throws when he gets told “no” or has a toy taken away, because it shows he has the cognitive ability to understand and a way to communicate when something is unpleasant. It’s also a “normal” toddler reaction, so it’s a nice reminder that not everything in our life is atypical.

Braxton Upset

 

We’re thankful for the times Braxton gets himself in trouble by opening the oven door, swinging the lid on the trashcan, opening the cabinets and banging pots and pans, or unraveling an entire roll of toilet paper, because do you know what cognitive and motor skills it takes to do any of these things!? Although it can be frustrating and we get upset with Braxton, inside we are elated because this shows so much progress!

We are thankful for the sweet laughter that fills our home daily.

 

We’re thankful for family that loves and supports us in so many ways.

We’re thankful for friends who care and share in our joys.

We’re thankful for people who read our blog and share our Facebook posts and have fallen in love with a little boy they have never met.

We are thankful every day for so very much in our lives. We remain positive in our journey because positivity has so much more power and love than focusing on the negative. We have bad days, but they don’t last long because we allow positivity to permeate every aspect of our life.

We wish the same for you. Look for opportunities to be thankful. Live every day with gratitude and positivity. Let your thanks extend beyond today and this season. From our family to yours, we wish you a very Happy Thanksgiving.

 

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Filed under Kids and Family, Life, Special Needs Child

Thankful for Team Braxton

Braxta Bear“It takes a village to raise a child” has completely taken on new meaning since Braxton came along.  From day one, we had a small army of people caring for him and working to keep him alive.  Two years later, we don’t have as many people on the “front line” so to speak, but they all stand ready when we need them.

Although there hasn’t really been one standout doctor for us, we are appreciative of them all.  I have heard some real horror stories about families dealing with some not-so-great doctors, and I thank my lucky stars we have only had one really bad experience.  While we have dealt with doctors offices not returning calls promptly, for the most part, they have all been extremely helpful.  I’m thankful our doctors have been proactive in caring for Braxton.  There were times that a test may not have been necessary just yet, but our doctor ordered it anyway.  For example, after receiving our diagnosis of Rubinstein-Taybi syndrome, we knew many kids were at risk for a tethered spinal cord (a condition where the tissue in the spinal column is abnormal which can affect gross motor skills and many other things).  I called our orthopedic doctor to relay this information and ask if it might be worth it to go ahead and get an MRI of the entire spine.  Although we didn’t have a lot of clinical evidence, our doctor wrote the order and Braxton had all 3 MRIs done.  Luckily, the MRIs came back unremarkable only noting very mild scoliosis.  Our pediatrician has also been very helpful and has pretty much ordered everything I brought to her attention or submitted referrals “just in case.”  We are thankful to all of the doctors on our team who have helped us along this journey.

Braxton in PTNow our therapists, are another story.  Each and every one of them is exemplary.  They have all at some point or another, gone above and beyond all expectations.  They love Braxton so much and it’s obvious that he loves them too.  Braxton has had Physical therapy and Speech therapy pretty much since the day we brought him home from the hospital.  He started Occupational therapy some time after, and is doing so well with her too.  We often talk about how far Braxton has come and all that he has accomplished under their direction is truly a miracle.  I love when our PT is visibly excited because Braxton stood without assistance for all of 2 seconds.  He really “gets it” and his excitement is truly genuine.  He is so kind and so gentle, but will totally roughhouse with Braxton when Brax is feeling feisty.  There is an unspeakable bond there and it’s beautiful.

Our PT supervisor has also been phenomenal.  She has taught me so much and is such a wonderful PT Supadvocate for Braxton and children just like him.  She sees so much potential in him that she made it a point to personally make some calls and make sure Braxton had a space at his current daycare.  We were worried at first, but we see exactly why she recommended this move and are so thankful.  She’s really been a guiding light throughout this journey and I thank God every day for bringing her in to our life.

IMG_0398Our Speech therapist has been so patient and determined when it comes to feeding Braxton.  Despite the huge setback and trying to overcome this oral aversion, I see just how hard she is working to help us and love that she is always excited when we see any progress.  She is now working with Braxton on using an iPad communication app to promote choice making, and Braxton is doing so awesome with it.  She is always keeping me updated on his progress and even calls just to check on him when she knows he’s been sick.  I so value her expertise and understanding.

Our Occupational therapist has been really great with helping Braxton really hone in on his fine motor skills.  His progress here is much slower than in other areas, but it’s progress and she’s always so proud of him.  Our daycare teacher made the comment that she loves that our OT doesn’t talk AT Braxton, she talks WITH him.  Braxton isn’t able to respond, but she talks to him as if he is going to talk back to her.  She, like all of our therapists, assume competence.  They don’t discount Braxton because of what he “might” not do, they all operate on the thought that he CAN and WILL do it, it just may take a little longer than normal.

We also receive hearing and vision therapy through our local school district.  They have both been awesome! It’s obvious that they care about Braxton and his progress and continually have “outside the box” ideas on how to promote his skills.  Braxton has especially taken to our hearing teacher as she is so kind hearted and fun to be around.  She has been helping us all learn sign language so that we can communicate with our sweet boy.

We are SO incredibly thankful for this simply amazing team of therapists.

We are thankful to the fans, supporters, encouragers, readers, kind hearted strangers…just everyone who has taken the time to read a blog post (or all of them!), visit the facebook page, like a post, share our story, share in our joy when Braxton reaches a milestone, say a prayer, or simply offer words of encouragement.  This outpouring of love really gets me through the hard days when I’m feeling lonely or isolated.  I can just look at our blog or at our facebook page and see so much love and so many people who do really understand and are hoping for the best.  This virtual support system is so needed and I’m thankful to have all of you on this journey with us.

We are also thankful to our physical support team; our family and friends.  We have had the pleasure of meeting some really great people on this journey who are walking their own path in this special needs world and their support and advice is much appreciated.  We all rally with each other and offer support and encouragement on this bumpy road.  Our family of course has been very supportive and help us whenever we need them.  Having all of these people to lean on during the hard times or cheer with us through the good times has been incredible.

We are so thankful for everyone in our life who has in some way or another contributed in the care of Braxton.  Our little village has helped this kid move mountains.  We didn’t know what to expect, but it’s obvious that a little bit of love and encouragement can go a long way.

Can’t think of anything more to say, other than: Thank you, Team Braxton. Just, thank you.

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

We Are Thankful

‘Tis the season of giving thanks and this year we have so much to be thankful for.  This time last year, Braxton was 5 months old and we were still trying to figure out what was next in our journey.  We have all come a long way in the past year.

As a family, we are happier and stronger than we were last year.  The undiagnosed journey has a way of turning lives completely upside down.  Through the year we’ve learned how to handle the stresses of it all [We’re no experts, but I think we do pretty well] and are finally able to enjoy our lives to the fullest. Make no mistake, the path to this acceptance is a long and treacherous road, but if you can make it through, and you will make it through, it’s completely worth it.

Today and everyday we are so thankful to wake up and see Braxton’s smiling face another day.  Once a doctor tells you that your child isn’t going to live more than a month, you truly realize the miracle that is life.  I’m thankful for 6 am wake-ups because it means my child is alive.  Braxton is so alive.  He has come so far this year, heck he’s come so far in the past two months! Four months ago, Braxton couldn’t sit, couldn’t crawl, couldn’t stand, he just laid there and we had to do everything for him.  Then, it was like a switch turned on for him. At 12 months he finally sat unassisted, 14 months he was moving from a sitting position to up on all fours trying to crawl and moving backwards, 15 months he was pivoting and moving with purpose, just before 16 months he finally started crawling, now at almost 17 months he is kneeling and pulling himself to stand….walking is not far away. We are so very thankful for each and every one of these steps.  There are so many little things we take for granted in life, but when you are told your child can’t or probably won’t ever learn to do these very basic things, the extreme joy you feel inside when he accomplishes any single one of them is unexplainable.  There are so many emotions at once – happiness, pride, joy, excitement, angst, anticipation for the next, and most importantly gratitude.  We are so grateful, so thankful to see our child growing and thriving.  He’s happy, he’s loving, he’s an adventurer, he’s a fighter, he’s a miracle, he’s the joy of our world. And there is still SO MUCH more in store for him and I can’t wait to see what goal he accomplishes next.  For now, we are living in the moment and are ever so thankful for every minute he is in our lives.

Halfway There

This is just 2 weeks ago. Braxton could only manage to pull himself halfway up.

Standing Tall

This was just the other night. Braxton found his way all the way up.

 

 

Aileen and Mom

Thankful for my mini-me

To my daughter, Aileen. [She’s 6 and can’t read this, but I have to share] I am thankful for my daughter. I am thankful Joseph has taken her in as his own and has been amazing with her the past few years.  I am thankful for her patience and impatience. I’m thankful that she makes me realize when I’m not being fair and ignoring her. I don’t mean to, but when your 6 year old tells you that she feels like you don’t play with her enough, it stings, but it’s honest, and I’m thankful for that honesty.  This is still new to me, having a child with special needs, I’m still learning to balance having 2 kids. Expecting a 6 year old to be patient with that is asking adult things of a child, and I’m grateful she still loves me no matter what. She’s so smart and such an incredible little girl. She’s gotten much more helpful with Braxton and less jealous. Now that he’s moving, she can actually play with him. I’m thankful for those moments. I’m thankful that Braxton has an amazing big sister. I love you with all my heart.

Mom and Dad

To my other half, Joseph. This year has been full of ups and downs, smiles and tears, fun and sleepless nights.  Thank you for being an amazing father.  There are so many guys who would have run as fast and as far as they could from this situation, but you have been a wonderful man and here for us in so many ways.  Thank you for running all over town because I booked 3 appointments in one day, thank you for waking up when you’re home so I can sleep, thank you for cooking and cleaning, thank you for sticking with a job that keeps you away because you know it provides for us.  Thank you for everything you do for me and our family.  I love you more than you’ll ever know.

We are thankful for our therapists. Oh gosh, our therapists! I love them! All of them!! They are so much more than therapists…they are our friends, they are our family.  They love and care for Braxton not as patients, but as children of their own.  I am so thankful our team has such incredible passion for what they do and aren’t just here for a paycheck.  They go through all our joy and sorrow with us. They cheer in excitement when I send them a video of Braxton doing something for the first time. They share my frustration when he regresses and we can’t seem to figure out why.  They answer every one of my questions, never tiring or making me feel like a burden.  I know you guys read this, thank you. I can’t say that enough. Thank you for all that you do and for loving our child, we are so thankful that you helped him get where he is today.  I watch him crawl, pick up a toy, take a few bites of food and I’m just in awe of the things you helped us do…things I never thought he’d do, but he does because you helped us.

We are thankful for our family and friends. Family is important in times like these and our families have been great.  Our family is there to answer our calls and hear our cries and join in our joys and sorrows.  They are here to watch Braxton when we have to work or need a short break to regain our strength. To our family, we love you and thank you.  To our friends, you don’t know how much it means to us to see you share our story or to see your words of encouragement when we express frustration because we’re at the doctor for the gazillionth time.  To understand that it’s a huge deal when we post statuses about milestones Braxton should have reached months ago, to see you share in our excitement without judgement is a blessing.  Thank you, each of you is amazing.

We are thankful for our readers.  We started this blog to keep our friends and family updated, but we’ve received so much support from complete strangers.  Thank you for your love and positivity.  We’re at over 7,600 views in just a few short months of me starting this blog and I still can’t  believe the impact it’s had.  To everyone who reads this, thank you. Thank you for taking time to enter our world. Thank you for taking the time to like, comment, or email us. We are so appreciative.

Today and everyday, we are thankful.  Happy Thanksgiving to you and yours!

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