Tag Archives: gratitude

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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Thankful For the Hard Times

I know that sounds crazy, but think about it. How can you ever really know good times without ever experiencing the bad times? If you never experienced pain, sorrow, and hurt, you would never know to recognize good health, prosperity, and joy.  Not to mention that learning to get through the hard times builds character and teaches you the courage and strength you possess.  We have been dealt our share of hard times and I’m certain they are far from over, but instead of being angry about them, I’ve learned to be thankful.

So, wait. You’re thankful that your child has a genetic disorder?  Well….yes and no.

BraxtonEvery mother of a child with special needs has wished their child’s syndrome away.  No child should ever have to suffer or fight for life the way our children do.  We learn to adapt, we step up and care for our children, wear the badge of “supermom” as both an accolade and a curse, and we love our children fiercely.  The sad truth is that we can’t simply wish the syndrome away or hope for a magic cure.  So in that respect, no, no I’m not thankful that Braxton has a syndrome.  I’m not thankful that he has significant delays. I’m not thankful that he can’t verbalize how he feels, what he wants, or what he needs.  I’m not thankful for the hours we spend in the doctor’s office, in therapy, or on the phone with insurance companies.  No child and no family should ever have to do those things.

HOWEVER, I AM thankful for what my son’s syndrome has taught me. Thankful for what he has taught me about myself, life, parenting, and truly unconditional love.  I’m thankful for the people we have met and the connections we have made.  I’m thankful for the love and support we have found in the special needs community.  I feel that I’m so much more thankful about everything than I would be if Braxton was ‘typical.’

The hard times have taught me patience.  I’ve learned to give Braxton the time he needs to figure things out, and while watching him instead of rushing him I see the wonder in his eyes, the intent with which he tries to accomplish a task, and the pride he has in himself when he does it all on his own.  I’ve learned to be more patient with others as well.  I’ve not perfected this yet, but I do notice that I lose my temper far less than I did before Braxton.  Sure, there are times that I just snap when I shouldn’t, but I recognize it and try to do better.

A single stepThe hard times have taught me gratitude.  I’ve learned to truly appreciate the little things and recognize that it’s the little things that mean so much to us.  I understand just how much work it takes for a child to learn to sit on their own, stand, roll over, pick up a cookie, put a toy in a bin, empty a toy box, wave – the list goes on.  EVERYTHING my child has done, he had to work for.  He had to be taught.  Hours of therapy were spent teaching him to do things many kids simply figure out on their own.  Braxton took THREE small bites of a cookie and I was so overly ecstatic and grateful for this incredible accomplishment.  Something I would not have experienced if it were not for the hard times.  I wouldn’t know THAT kind of joy and gratitude if Braxton was ‘typical.’

St. David's NICU ReunionThe hard times have brought my family closer together.  Joseph and I learned to really work together to care for Braxton.  Watching him hold Braxton, make him laugh, or simply watch him with pride has made me fall even more in love with him.  There is just something about seeing the man you love be an incredible father.  We have had our share of hard times, but we have come out stronger every time.  Our immediate families have also been more involved and learned to care for Braxton and spend time with us whenever possible.  Aileen has been an amazing big sister and now that Braxton is more mobile she is truly enjoying “showing him the ropes.” Seeing the two of them together warms my heart.

The hard times have taught me courage.  Never in a million years did I think 1) that I would have a child with special needs and 2) that I would be able to share our experience in such a public fashion.  I recognize the courage I had to build to be able to put our story out there for all of you to read.  The courage it took to share our experience with media outlets.  The courage it takes to stand in front of a room full of strangers telling our story hoping that even ONE person finds THEIR OWN courage to fight for what their child needs. The courage it takes to persistently call a doctor because you just KNOW something is not right and they aren’t listening.  The courage to question a doctor and ask them to take a deeper look.

The hard times have taught me about faith.  I’ve always held true to my faith and the values I learned growing up, but I took a step back some time ago.  It’s been about a year now since I’ve gone back to Church and pulled my faith closer to me.  I see the greater picture and I know the power of prayer.  I know God and see Him at work in my life each and every day.

The hard times have led me to find my purpose.  My life is not at all what I imagined for myself, but I know it’s exactly what I’m supposed to be doing.  I KNOW that I’m supposed to be sharing my story with you and reaching out to others to walk with them on this journey.  I can’t tell you the joy and gratitude I feel when another mom reaches out to me to say that one of our experiences helped her through an equally hard time.  Or when a mom reaches out for help to find answers or asks where to turn and I’m able to answer her or direct her to the right place.  The thanks she gives me for listening when no one else would makes me feel good about myself and makes me want to do more.  I want to pay it forward for all the help I’ve had along the journey.  I enjoy helping people. I enjoy listening to their stories and finding the similarities in our journey so that they don’t feel alone.  I know that this isn’t what I had planned, but it’s where I belong.

The hard times have taken me through every emotion possible, but I’ve learned to stay strong and hold my head high.  I’ve learned that it’s okay to grieve.  It’s okay to cry, sometimes for no reason at all.  I’ve learned that I’m stronger than I ever imagined.

I’m thankful that I’ve seen hard times because I now know a joy that I could have never experienced otherwise.  Hard times are not the end of the world.  They are opportunities to learn what you are made of and teach you to be thankful when the good times come your way.

Choose Joy Everyday

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Thankful Thursday: Braxton is Walking!

Yes, you read that title correctly! Braxton is making amazing progress with walking.  I picked him up from daycare the other day and his teacher said, “Look what your son is doing!” She grabbed him by one hand and he started WALKING with her!!!! I quickly came to my senses and said “No, no, waaiiitt! I have to get this on video!” And here you go:

Yayyyyyy!!!! We’ve been walking him around at home a little more and his teacher told me today that they make him walk everywhere.  They are so patient with him and if he takes longer than the other kids, it’s totally okay! I am soooo sooo thankful for this incredible accomplishment.  I’ve cried lots of happy tears.  With every milestone, I think back to the hospital in the first few days of Braxton’s life and think how the doctor’s didn’t even give him but a few weeks to live and here he is rolling, sitting, crawling, standing, and finally walking.  First steps are always awesome, but when everyone counted your child out before he even had a chance, first steps are a miracle.  I take nothing for granted. Braxton has worked so hard and continues to do so each and every day.  His hard work is definitely paying off and I am so incredibly proud of Braxton.

So is his sister. Aileen drew a congratulatory card for Braxton after I showed her the video of him walking.

Such a proud sister <3

Such a proud sister ❤

And if that wasn’t enough, today, they channeled their superhero powers and practiced together. ❤

Some serious @tinysuperheroes work going on! Super Sidekick Aileen helping Super Braxton walk!

A post shared by Vanessa Vaughan (@vnessa_22) on

Beyond blessed and so incredibly thankful for my amazing kids.

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Hey you, yes YOU, you’re awesome!

Big sister showing love for her brother :)

Big sister showing love for her brother 🙂

Rare Disease Day is winding down, but one thing that isn’t, is our gratitude.  Just a quick post to thank each and every one of you who visited the site, read our posts, clicked around to other posts, shared the blog on facebook, changed your facebook profile/cover picture…the support is truly overwhelming.  Our friends and family never cease to amaze me. I tried to ‘like’ or comment on every single share or picture change, but I honestly lost track, so if I missed you, I’m sorry, but I do thank you from the bottom of my heart! Joseph and I BOTH thank you!

I really hope this doesn’t start to sound old or fake, but we really are so very grateful to you all for sharing our story.  We think Braxton is amazing, but we’re his parents and we’re supposed to, so to know YOU think he’s amazing too, well that just warms our heart.

Continue spreading the word, because Braxton has so much to teach the world.  Destined for greatness.

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Moving Right Along

Have I mentioned how amazing Braxton is?! OK, sure, I’m just a tad biased, but this little boy continues to amaze us all each and every day.  Since we’ve had his hearing aids back from repair, he has been so much more vocal! He’s just “talking” up a storm now! It’s the cutest thing.  All of our therapies alternate between seeing him at home and seeing him at daycare.  I’m so thankful that they have been very flexible with us, and even more grateful for their continued perseverance with Braxton.  He has truly turned a corner and taken off in a way I never thought possible.

Since I work during the day, I communicate with all of the therapists via e-mail, texts and phone calls. Yay for modern technology! When Joseph is home, he fills me in on how the visits went, but I still stay in close contact with everyone.  I want to be sure Braxton stays on track and that we are doing all that we can at home to ensure his success.  They can’t accomplish all the goals simply by seeing him twice a week, there is lots of practicing and reinforcing throughout the week.  I’m glad his daycare is so instrumental in this as well.  Everyone in our lives has done all they can to help Braxton succeed, and he’s doing just that.

This week, his Occupational Therapist sent me a message mid-session because she was so excited that Braxton was playing with a toy piano using BOTH hands together and he even clapped a few times in a row without being prompted!! So AWESOME!! We’ve been working on clapping, bringing his hands together, trying to bring two toys together, and so far, he won’t do it.  We can prompt him or hold him at his elbows to make his hands clap and he laughs and laughs, but won’t do it on his own.  So for him to do it at all was a HUGE deal!

Today, his Speech Therapist called me after their session excited that he was very vocal with her today.  (It always happens that he shows off his vocal skills for everyone except the ONE person who NEEDS to see them…sheesh) But today, he talked to me in the car the ENTIRE way to daycare.  It’s about a 30 minute drive from home, so it was so nice to babble back and forth with him on the ride.  I was afraid he’d be all talked out for his session, but he wasn’t. 🙂 She told me that he talked almost the entire session for her.  He was very attentive to the books she had and since he was babbling “ba” over and over, they worked on the animal sound for Sheep.  It took a little bit for him to repeat it when prompted instead of saying it just because, but eventually he did it! A few weeks ago he even attempted to imitate a lion “roar” and our therapist sent me the pics above from that session! OH, and how could I forget! She said she walked in to daycare and he had his back to her so she called his name and he immediately turned around, recognized her voice, and smiled as he crawled over to her! At 19 months, Braxton still doesn’t really know his name or consistently turn to it when called, so moments like this are golden.

Our monthly supervisor visit for Physical Therapy is on Monday, and I look forward to a message from that visit too.  Braxton is quite the charmer when MEP comes to visit. hehe

Sometimes,  I feel guilty for working outside the home and not being instrumental in these sessions, but our therapists do such a wonderful job of keeping me in the loop and I do all I can to reinforce everything at home, so it’s like I’m not missing out at all. I love receiving pictures, texts and phone calls from everyone.   I’m grateful everyday knowing that we started therapies almost immediately once Braxton was home from the NICU. On paper, they all said the prognosis for Braxton seemed very bleak. Upon meeting him, they were all hopeful he could at least be helped. And now, they too are amazed by our little man and all of the progress that he’s made.  A teacher once told me, “The only limits you have, are the ones you put on yourself.” Braxton certainly seems to understand that his success is truly without limits.  I can’t wait to see what he’ll do next.

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