Tag Archives: joy

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.

2 Comments

Filed under Life, Special Needs Child

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

2 Comments

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

Typical, Yet Far From Typical

Big Good Morning Smile from Brax

Big Good Morning Smile from Brax

Here lately, Braxton has made some significant progress.  As he is getting older, he is “catching up” on some things, yet far behind in others.  I catch myself thinking, yup that’s what a toddler is SUPPOSED to be doing.  Or saying things like, boy it’s like we have a real toddler around here! (Obviously, he’s real, but he’s not at all been a typical toddler until recently) Braxton will be 2 years old next month (I can’t believe it!), but developmentally, he is still at about 10-11 months I’d say.  For instance, he is crawling fantastically and pulling up to stand and trying to cruise, which is typical for a 9 – 10 month old.  Once he really starts walking, I’m certain he will make so much more progress.  He’s getting pretty good. Here he is during a Physical therapy session doing some assisted walking…he took 30 steps while I was there for the tail end of the session.

Toys all around him.

Toys all around him.

Braxton is also doing really great with exploring his environment.  One minute he’s at the patio door and the next he’s in his therapy room with all the toys in the middle of the floor.  Yup, typical toddler leaving a path of destruction behind him.  For a long time, Braxton just sat next to us, slept, and pretty much did nothing. We’d play with him and there was no registered emotion.  Now, I walk in to a room and he’s pulled toys off the shelf, emptied toy bins, and crawling over to another toy and playing all on his own.  When we sit and play with him, he is actually quite interactive and will laugh and smile the whole time.  Especially when sister plays with him. He likes to pretend to knock her over and when she exaggerates the fall, he thinks it’s hilarious.  The sound of laughter fills my home and heart.

Are you talking to me?

Are you talking to me?

Braxton now also knows his name.  Just one other thing we don’t realize actually has to be learned.  I would call him all day long and get nothing in return. But a toy goes off and his head whips around. At first, I figured he was being a typical toddler by ignoring mom and only paying attention to cool toys, but it’s just taken some time for him to learn we’re talking to him and not the wall.  In the past couple weeks, I have called his name and he turns around with a big smile on his face. Or if he’s across the room, he turns around, sees me, smiles real big, and crawls as fast as he can over to me.  It’s the sweetest thing, but it’s been a long time coming.  I never thought it’d be almost 2 years before he understood much of anything.  He knows his name now, and that’s huge.

Another typical toddler thing he’s doing is dropping things on purpose and then crying dramatically to sucker mom into picking him up.  I have sat and watched him literally stick his pacifier over the edge of the play pen, swing it around, and then throw it.  He then stares at it, and then goes in to full on crocodile tears and drops to the floor just to make sure mom knows he’s really upset.  I just laugh.


Braxton is doing so well and I just love watching him develop.  Each and every accomplishment is celebrated in our home.  I am often so overwhelmed with joy that I just cry thinking of all the things he is doing that no one ever thought he’d do.  I’ve read the reports, I’ve talked to our therapists..they were all really worried at first, and so were we. And now, we all rejoice with his progress.  He never ceases to amaze us with his courage and determination.  Some days, in some moments, he’s just like any other typical toddler, although in reality he is behind and  so far from typical.  One thing is for sure, he is one extraordinary little boy who is going to continue to defy the odds and surprise us all.

1 Comment

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

A Special Mother’s Day Gift

Happy Mother’s Day to all of my fellow mommy friends! Here is the post I wrote over on sisters blog along with video of her reading a book she wrote for me. Braxton may not say much, but his sister says plenty for the both of them. I am so blessed and incredibly loved by these amazing kids. Braxton tells me he loves me in his own special way, and while I long for the words, I’m content with simply knowing what’s in his heart for me.

According to Aileen

“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.”

 

I have been so blessed with 2 incredible kids. Aileen will be 7 and Braxton will be 2 next month. There are plenty of hard times, but the good times always, always outweigh the bad.  Life is full of so much love and happiness with these kids.  We went to church this morning and then to get groceries. We are spending the rest of the day cuddled up watching movies….that is a great day for me.

This year, Aileen wrote me a special book for Mother’s Day.  I read it and barely held back the tears, but then I had her read it to me out loud and couldn’t contain myself.  So many happy tears. I love this little girl so much!…

View original post 44 more words

Leave a comment

Filed under Family, Kids and Family, Life

Every Day, We Choose Joy

When life deals you a hand you didn’t expect, you can sit and be mad about all the things you think you’ve missed out on, or you can adapt and learn to embrace the life in front of you.  Sometimes, you go back and forth between those choices as you go through stages of grief and mourning the life that could have been, before you learn to love the life you have and make a choice to be happy.

We are often asked “how we do it?” or told how impressive our positive outlook is or that we’re special people so God gave us a special child.  Truth is, most days I don’t know what I’m doing or how I’m even functioning. Some days I’m not so positive, I sit and think about all the what-ifs and cry and worry.  And we aren’t special. We’re normal people, just like you.  It doesn’t take a special kind of person to parent a child with special needs, over time you BECOME who you NEED to be for the sake of your child.  We all have it in us to rise to the occasion, but it’s up to you to CHOOSE to do so.  The path to making that choice can be tumultuous and you go through every emotion possible, but eventually you CAN find your way to happiness.  I can’t promise every day is going to be happy. There will always be hard days.  But I CAN promise that the good will always outweigh the bad.

Perhaps that’s a promise to myself, since we have a very important appointment coming up next week, and it’s been weighing heavily on my heart.  It’s possibly the culmination of this journey and the beginning of the next, or possibly not.  In December, we had blood drawn and sent off for Exome Sequencing.  After many genetics tests, I was certain this was the one we needed, the one that was going to answer all of our questions.  When we arrived and the genetics counselor told me that in reality, this test has only provided a diagnosis for 20% of the patients who have had it done.  This was much lower than I thought and my hope was once again deflated.  Then, a few weeks later, I got a call from the genetics office telling me results for our test would be in by April 13th and that the doctor wanted us to come in for our results.  I told the lady we had an appointment already scheduled for the end of May and asked if we could just keep that one.  She put me on hold and came back and said “No, the doctor would like you here when your results come in.” I was baffled. Then, I was excited! They found something! No, there’s no way, it’s too soon, it’s only been a few weeks.  I spoke with one of our therapists, and she too, said there must be a diagnosis or at least a lead.  Again, I was full of hope and also impatience. But I wanted to know now, if they knew something why couldn’t they tell me? Perhaps they knew nothing at all? But surely….SURELY they would not call and move my appointment UP to tell me no news…would they?

Hard to believe that conversation took place 3 months ago.  I didn’t know what I was going to do to keep from going crazy. All day long, I thought about that conversation.  Every possible scenario played through my mind.  What if they found something? What if what they found is so rare it doesn’t give us any information at all? What if the doctor was just going to be out of the office on our original appointment so they moved us up? How was I going to keep from wondering every single day what that call meant. That night, I cried.  I broke down. It was all too much. So overwhelming. And just like I had before when we came out of NICU, I made a choice.  I chose joy.  The what-if game brings nothing but heartache.  My life is full of enough uncertainty daily, I didn’t need to consciously entertain it any more.

21 months without a diagnosis. 21 months of worry. 21 months of uncertainty, fear of the unknown, wondering if my child would wake up the next day, wondering if my child would crawl, wondering if he will walk, wondering if he will speak.  Does a diagnosis change any of that? No, probably not. Best case scenario is that he’s diagnosed with something that there is already research for so we have some kind of prognosis to go by.  Sure, that’s not entirely accurate, but it would at least give us some idea about what life might be like.  Something to plan for. Something to teach my daughter about so she’s not scared and so she understands what’s going on with her brother.  Something to say this is a completely random gene mutation and it wasn’t caused by anything YOU did. (Because, yes, there are some days I do blame myself. I must have done something for this to happen. In all likelihood I did nothing, but it’s a feeling that is hard to shake)  Something that says if I decide to have children again I don’t have to worry about this. Or possibly that it will happen again…but at least next time I’d be prepared. I’d have a much better idea of what to do.  Worst case scenario…no diagnosis.  A “sorry, we still don’t know what’s happening with your child, but hey come back in 6 months and we’ll see if he’s grown into his diagnosis.”  Where do we go from there? What other tests are there? I’m sure there’s more, but what if there isn’t.  What if we’re to be 20 years with no diagnosis waiting for the science to catch up and give us the answers we want.  No, I’m not being crazy. There are families 20 years in to the journey still trying to find a diagnosis for their child.

These are the thoughts I suppress, because if this is all I focused on, I’d be a wreck.  I’d miss out on all of the wonderful and amazing things Braxton is doing.  Focusing too long on the unknown and the negative causes you to lose focus on the positive aspects of life.  Braxton is HERE. Braxton is ALIVE. Braxton is crawling. Braxton is making progress. Braxton is laughing. He is full of life. And he is full of so much joy that it just pours out of him and into the lives of others.  These are the things I choose to focus on.  I’m not going to sit here and pretend that I’ve got it all figured out, because I don’t.  I’m not a better parent than you.  I’m not a stronger person than you.  If you were in my shoes, you’d do exactly what I’m doing. You, too, would rise to the occasion.  You’d be surprised to learn the strength you truly possess.  However, I don’t wish this on you. It’s quite the paradox. I love the life I live, but I wouldn’t wish it on anyone.  It’s hard and some days it sucks. The rewards are great, but the hours are long.  But, it’s all about perspective.  Not just the journey with a child with special needs.  Life in general. Life is about perspective. It’s about what YOU choose to make it about.  You can choose to focus on all the problems you have, or you can choose to see the brighter side.  You can choose pity, misery, and uncertainty, or you can choose to have hope, love and joy.  For us, it’s simple…each and every single day, we choose joy.  We choose to live day by day cherishing each day and all the good in every day.  Yes, sometimes, we too complain about every day woes, but every day at the end of the day as we watch our children laugh and play we are reminded that this life, no matter how hard it gets (or what next week’s results might bring us), is full of so much joy and happiness.

Choose Joy Everyday

This post was also published on The Mighty.

8 Comments

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