Tag Archives: hope

Hello 2014, Goodbye 2013

It’s amazing the difference a year can make.  Looking back on our posts from last year and all the photos, it seems as though I have a completely different child to share with you all this year.  2013 has been full of so many wonderful achievements!!

I looked back at the goals I wrote in my first post of 2013 and I’m happy to report, that Braxton has knocked most of them out of the park!

  • Talking – Well, this one he did not accomplish, but we know speech is going to be an area that needs a lot of work. Braxton is babbling a little more than he was last year, but he still does not have any words.  We have been working with our speech therapist on using an iPad for choice making as a precursor to using it for his communication device as he gets older.  We have also been learning sign language and although Braxton has not learned any signs, we have all made pretty good progress and have a good foundation of sign language.
  • Eating – Seemingly overnight, Braxton has emphatically checked this one off the list.  Nearly 15 months in the battle of overcoming a severe oral aversion, Braxton is finally eating by mouth AND he enjoys it! He is currently eating 3 times a day anywhere from 4-8 ounces each time.  Right now, his favorite food is cinnamon applesauce! I have been able to get him to try new foods by mixing in a little applesauce or sprinkling cinnamon.  We are hopeful that he will continue to make great progress.

    Yummy in my tummy!

    Yummy in my tummy!

  • Interactive Play – Wow.  Just spend 15 minutes with Braxton and you wouldn’t even believe this is a goal we had for him! He LOVES to play with us now and is VERY interactive.  He plays with purpose and initiates new games and the games he likes.  He will reach out for my hands to ask me to play “Row, Row, Row Your Boat” with him.  If we are playing with a toy and I take it away, he will gesture to say that he wasn’t done playing.  He laughs during play now and when you do something funny.  He will even come get us from across the room just to give us a hug or ask to be held for a moment.  Braxton gives the best hugs.
    Smile
  • Walking – We are SO close!! In October, Braxton made significant strides in assisted walking.  We can hold one hand and he will walk right next to us.  Recently, he took his first independent steps in physical therapy!! He will consistently take 3-5 steps on his own to get from one person to another.  He even took on the stairs this year! He has climbed them a few times successfully with some help.  We are working on independent standing now and his therapist is certain once we get that down that Braxton will take off.  Braxton will stand on his own for about 5-10 seconds before he grabs on to something or falls down.  He is doing AMAZING with balancing himself and trying to maintain balance as he stands on his own.  He is working so hard and I know that he will walk on his own very soon.
    Braxton Walking

 

I’ll say that Braxton has certainly accomplished so much and he continues to make steady progress.  There was a lot of change this year and Braxton handled it all so well.

Braxton started a new daycare that has been instrumental in helping him achieve so many new milestones.  We were so worried about moving him to a new school, but it has proven to be the best choice for him.  I love his new teachers and how excited they are for Braxton to succeed.  We have been so blessed with such a great team of teachers and therapists.

2013 was also the year we finally got a diagnosis. Getting a diagnosis brought such a relief to all of us.  I will never stop worrying, but I worry a lot less now that I have a name for what is going on with Braxton.  We have been very fortunate to ‘meet’ so many people who have a child who shares Braxton’s diagnosis.  We have a phenomenal virtual support team in place and I love how supportive and encouraging everyone is.  We love our RTS family and wish them all the best in this new year.  This year, I hope we can attend one of the RTS reunions to meet some of these wonderful people in person.

Medically, 2013 was the year everything finally settled down for us.  We are down to seeing most of our specialists every 6 months or once year which is a huge change from 4-5 appointments a month! Now that we have a diagnosis, our doctors have a better idea of what to look out for and we have a better plan in place for him. Braxton is medically stable (*knock on wood*) and we did not have any major illnesses this year.  This cold and flu season is especially brutal so I’m hoping we can manage to keep Braxton well and out of the hospital. He is still seeing all of his therapists twice a week which makes 6 hours of therapy every week.  He also sees Vision and Hearing teachers from the school district who have been very helpful.

2013 was a huge year for me finding the courage to actually speak up about our story. I started the blog in 2012 and in 2013 I had the great joy of visiting our local news station to advocate for Feeding Tube Awareness Week, visited a radio show to share our diagnostic journey, spoke on a parent panel at the Texas Parent to Parent Conference, filmed with a documentary crew to shed light on the Undiagnosed community, and continue using my blog as a way to share our story and advocate for children with special needs.  I’ve also been fortunate to sit on the board for U.R. Our Hope to help others on a diagnostic journey find the answers they are longing for.  My life has found new purpose through what most would consider dire circumstances.  I didn’t expect this life, but I have learned to make the most of it and am proudly helping others.  My life is full.  I am happy. I am blessed.

2013 has been very good to us and I’m very excited to see what 2014 holds!

In 2014, there will be even more changes for Braxton and I know he will be just fine.  Braxton turns 3 in June which makes him eligible for Preschool for Children with Disabilities.  This means Braxton can attend our local elementary school this August.  Where we live, the program is only half a day.  Now that I am working from home, it will be much easier to coordinate the schedule without worrying about after school care since finding daycare proved to be so difficult this year.  I’m still uncertain if I will enroll him in school or let him go in to the preschool program at his daycare instead.  I do know I will be meeting with the Early Childhood Intervention coordinator in March to set a meeting with the school to discuss everything, so stay tuned for more!

In 2014, Braxton WILL walk! No doubt about that.  He is so close and working so hard.  I know it’s only a matter of time.  Once he is walking, I’m sure all the fun really begins.  It won’t be long before he is running and jumping and climbing and really in to everything.  I cannot wait!

In 2014, Braxton will begin self-feeding.  His Occupational Therapist is working on getting Braxton to feed himself and he will successfully bring a spoonful of food to his mouth at least 10 times in therapy.  We’re also hoping Braxton will expand the variety of foods he eats.  He is still eating pureed foods, so by the end of the year, it would be great to see him eating some table food.

I know that we will see some pretty incredible things from Braxton this year.  I’m so glad that we didn’t listen to the doctors who told us he wouldn’t do much of anything.  He sure has proved them wrong and continues to do so every day.  It has been quite the rollercoaster ride, but I wouldn’t change it for anything.  Braxton inspires us to be better parents, live life more joyfully, and to slow down and simply enjoy the ride.

Cheers to 2014!!

 

// Some fun blog stats:

  • This year we surpassed 33,000 views!!

Here are some of our top posts!

I’m excited to continue sharing our story with you! As always, thank you for reading and sharing our story.

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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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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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The 2-year Hurdle

Yikes! I inadvertently went on a blogging hiatus. Sorryyy! While things have been relatively ‘boring’ medically, I have managed to keep us all VERY busy! We have been taking advantage of things slowing down medically by actually enjoying our weekends and doing things that seem almost…’normal.’ Hmmm…imagine that!?

Movie time!

Movie time!

Earlier this month, big sister, Aileen, was invited to TWO birthday parties in one weekend!  That same weekend, I also took the kids to a Sensory Friendly Showing of “Cloudy With a Chance of Meatballs 2” at our local AMC theater.  This is the 2nd movie we’ve done with AMC and both times have been really great! I love that the lights are low but not completely dark and the sound is much lower than normal.  Even with his hearing aids, Braxton did really well and did not startle during the movie.  He also did really well at the birthday parties with his sister.  It was so nice to be able to let her have fun with her friends instead of having to stay home because brother was sick or needed to be on continuous feeds.

Shortly after, I started a new job and have been juggling my old job as well until the end of the month.  AND since I don’t have enough to do, I had also been working with U.R. Our Hope preparing for our inaugural fundraiser gala.  We planned a very nice dinner and silent auction with friends and supporters of the rare and undiagnosed community.  I think it all went very well, and it was so wonderful to see such incredible support.  As part of that weekend, U.R. Our Hope also hosted a conference on Patient Advocacy and we had the amazing opportunity to film with a documentary crew for an upcoming feature on the Undiagnosed.  I was asked to speak on a parent panel at the advocacy conference and also share our diagnostic journey with the film crew for the documentary.

It was in sharing our story and looking back on this past month of the most ‘normal’ we’ve ever had, that I realized we’ve reached this “two year hurdle.”  In talking to other families who have children with special needs, I’ve found that many say the first 2 years were the hardest and that somewhere around age 2 things seemed to calm down.  I really feel like that has been the case for us.

The first year was by far the most tumultuous.  We went through so much from not knowing how long Braxton would be with us, not knowing what the future held, not knowing the exact cause of all the issues, surgeries, countless doctors appointments, so many therapy sessions, and our relationship was tested in ways that should have broken us apart.  We spent so long just going through the motions, fumbling our way through our routine and this ‘new normal’ and I don’t even see how we did it.  Somehow through that journey I found people to walk with us and build us up to find the strength and the courage to stand up for our son, for our relationship, and ultimately fight to find answers.  The only way to explain it is that God was with us every step of the way testing us to the brink of all that we could handle and every single time he was there to catch us as we were falling and bring us back to where He wanted us to be.  We came out stronger than we ever could have imagined.

Around 15 months, something clicked for Braxton and he really started to take off.  It really hasn’t been ‘smooth sailing’ since then, but we have certainly seen easier days.  We have gotten most of Braxton’s medical issues under control and have learned all that we need to really be able to care for him.  I remember when handling the G-tube was the scariest thing I could fathom and now it is so much a part of him that I forget to mention it when giving a ‘medical history.’

Along the way I also learned how to focus on the positive aspects of our life instead of the negative.  Finding life’s blessings even in the darkest of times saved me from severe depression.  There have been times when I didn’t understand why this all happened or why my son had to suffer, times where I thought I just could not handle one more thing and then bam everything seemed to crash down.  But every time, I’d look down at my little boy and see his smiling face and I was reminded of everything I have to be thankful for.  I met families who were going through so much more than us and families who were having to say goodbye to their child way too soon and I realized that despite our struggles, we were blessed to still have our little man with us.  No matter how difficult things were, he was with us and needed us. Braxton has made us better parents and better people in general.

In every interview I’ve had to do, I’m always asked “What advice would you give to parents in your situation or who are at the beginning of the journey?” I always be sure to say that I want other parents to know that they are not alone.  This journey can be so lonely and so frightening at times that we feel like no one else on this Earth could ever understand what we are going through, but I’m here to tell you that there IS someone who understands! What I’ve learned is that despite the diagnosis, the special needs journey is similar for all who go down that road.  We all share many of the same experiences and have so much to offer each other in the way of support.  Let your guard down. Let someone come in and share their story with you. You would be surprised to learn just how similar their journey is to yours. We all share so many of the same emotions, fears, hopes, dreams, and we all want the very best for our children.  If you are just starting this journey, try to reach out to someone or allow someone to reach out to you and walk BESIDE you along this path.  Having someone to walk with you or simply be there when things get hard makes all the difference in the world.

After looking back on our journey as I’ve shared it over the past month I’ve found another important piece of advice; it gets better.  The first year is definitely tough, I’m not going to lie about that.  There is so much to learn and so many specialists to see to get all the answers you need to care for your child.  There will be sickness, uncertainty, unexpected hospital stays, financial strains, and a roller coaster of emotions, but eventually it all slows down and things get better.  We are down to yearly appointments with some of our specialists and still every 6 months with a couple.  We had 3-5 appointments every month for the first year.   This month we had 1.  Your journey may be different from ours and perhaps your child is more medically fragile, but at some point you learn to manage everything and come to a place where things aren’t so hectic.

Braxton walkingI know we aren’t in the clear and there is always the chance that something will happen to set off the cycle again, but for now I’m enjoying what has been the most ‘typical’ month we’ve had in 28 months.  I’m so thankful that I’ve found a support community both virtually and in person.  That outside support has been my saving grace at times.  We are finally making it over this 2-year hurdle and Braxton continues to amaze us.  He is doing so well with walking!  His balance is getting better and his pace is getting faster.  I just know that one day soon he is going to let go of my hand and walk away.

28 months ago if someone would have said “hey it will get better, he’s going to be walking and doing just fine,” I probably would have slapped them across the face because in my grieving that was the last thing I wanted to hear.  So if you are reading this and at the beginning of the journey, (I hope that you don’t slap the person that tells you this in person) since you and I are a safe distance apart, I’m going to go ahead and say it….IT GETS BETTER! Hang in there, this journey is rough but the rewards are great.  You will find the strength and the courage to carry on.  Find a support group either virtual or face-to-face to connect with someone who has walked this path before and can walk WITH you.  And just when you think you can’t take ONE more thing on your plate, know that slowly your plate will become more manageable and you might even find some space for dessert!

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Honoring 9/11

Remember 9/11Like many of us, I remember exactly where I was, what I saw, who I was with, and exactly how I felt 12 years ago today.  I was old enough to know what was going on, but just young enough to fail to truly grasp the magnitude of what had happened that day.  I was pretty smart and mature for a sophomore in high school (if I may say so myself), but I can honestly say I did not and could not comprehend the events that occurred.  I remember the looks of fear, terror, and sadness in the adults around me that day.  I was in Junior ROTC shortly after hearing the news, and the looks on the faces of our retired Air Force instructors are forever engraved in my mind.  My school was close to an Air Force base, so I remember thinking my area was a sure target should this go any further.  I was fearful that day and the days after.

As the years have passed, I remember all of this and I am again saddened.  As an adult, as a parent, I am saddened by what I can remember, saddened knowing that families were broken and dreams were shattered that day.  9/11 was a wake up call to all of us that everything in this world can change in an instant.  What would you do if your spouse didn’t come home today? What would you tell your children? How would your children continue growing without their parents? 9/11 made us remember not to take life for granted, yet many of us still do.

Smile despite the hurt.

Smile despite the hurt.

Every day is not promised, and many of us fail to recognize this.  In those days where I wasn’t sure if Braxton would survive, I was again reminded that we should not take life for granted.  Every day Braxton reminds me to be thankful for the days we are given because you never know when they will be taken away.  He is proof, that life can be full of joy despite the obstacles we face.

So today, do not be be somber. Choose not to live a life of fear. Instead, be happy, be thankful, be fearless. Fearless is not the absence of fear, but rather the ability to look fear in the eye and choose not to succumb.  Be strong, be brave, be courageous.  Use your words and your actions to fight evil.  In the battle of good vs evil, good must prevail. So DO SOMETHING good today!  

Today, we remember the fallen and honor their legacy. We thank the first responders, and the men & women (past, present, and future) who fight for our freedom. Today, we choose to be joyful and thankful for this precious life that we have been given.  Today, and every day, we will DO good so that evil cannot prevail.

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