Tag Archives: u.r. our hope

Braxton’s Birthday Project

Can you believe Braxton is going to be 3 years old already?! Time has flown by and our little man has certainly come a long way!

Every year, we have some very nice people who contact us via our blog or Facebook to ask for an address to send cards or gifts to Braxton on his Birthday or for Holidays.  While we are very appreciative of such kindness, this year, we’d rather you do something a little different to honor Braxton on his birthday.  Without further ado, here is this year’s project for Braxton’s 3rd Birthday, which is on June 24th!

Braxton's Birthday Mission

 

Braxton’s birthday theme this year is Superheroes and with that in mind, you have all just been given a Top Secret Mission.  Only, it’s not so secret! We encourage you to share this far and wide to spread some kindness and tap in to your own super powers.

This year, if you are not local, instead of sending Braxton a card or gift, we are asking that you make a donation in his honor to one of the organizations who has touched our life deeply. Any amount is appreciated! Even $5 can go a long way.  If everyone gives a little, it adds up to a lot that these organizations can do for their community.  These are the organizations we’ve chosen:

U.R. Our Hope

U.R. Our Hope – U.R. Our Hope is a registered 501 (c)(3) non-profit based in Austin, TX that assists families on the journey to finding a diagnosis or helps them navigate the healthcare system with a rare diagnosis.  They provide meals for families during hospitalizations, help facilitate research and medical referrals, provide gift cards to families traveling for medical appointments, and are hoping to raise money to gift Whole Exome Sequencing to families still searching for a diagnosis.  U.R. Our Hope was instrumental in not only helping us find a diagnosis, but helping us connect with other families.  That face-to-face support was exactly what I needed to cope and empowered me to be the mom you all admire now.  I was very scared and alone at the beginning of this journey, but with the help of U.R. Our Hope I found my footing and have now helped others walk the path as well. I’ve also been honored to be a member of the board of directors for the past year. Although we have now found a diagnosis, we are forever indebted to U.R. Our Hope and hope you will consider supporting them as they have helped us.

Undiagnosed Documentary

Undiagnosed: Medical Refugees – This is the documentary we were honored to be a part of this year.  We were able to share our diagnostic journey with the team to help others understand why finding a diagnosis is so important.  Countless families are struggling to find a diagnosis and sadly, some have lost their children without ever knowing the reason.  Our journey was MUCH shorter than average and I’m so grateful for the help we’ve had along the way.  This documentary would be so revolutionary and change the way medicine is practiced today.  A donation to the film would go toward helping them complete the project so that the world can learn what we have experienced firsthand.

Special Friends Foundation

Special Friends Foundation – Special Friends is also a registered 501 (c)(3) organization who serves families with Rubinstein-Taybi Syndrome, which is Braxton’s diagnosis.  Special Friends provides financial assistance with medical bills, uncovered medical expenses, special therapies, augmentative communication and so much more.  A donation to them would help the fellow members of our RTS family.

Tinysuperheroes

Tinysuperheroes – This extraordinary organization provides capes for children fighting big battles. Capes are sent to children battling life threatening illnesses, lifelong disabilities, and other chronic medical conditions.  Parents of children with special needs already see their children as superheroes and a cape shows the rest of the world just how strong our kids are.  Braxton received his cape last year and has seen him through surgeries and doctors appointments.  You can empower a Tinysuperhero for just $35! There are so many waiting to receive their cape.

Sammy’s House Austin

Sammy’s House Austin – Last, but certainly not least, is Braxton’s amazing daycare.  Sammy’s House is also a registered 501 (c)(3) non-profit organization.  They provide childcare services for children who are medically complex.  When our daycare closed last August, I could not find a provider who would take Braxton and that I trusted with his medical care.  Sammy’s was a godsend.  Their director lost a child to Down Syndrome many years ago and he was the inspiration behind Sammy’s House.  She, too, could not find a provider she could trust or who had enough experience to work with her medically complex child, so she started a center all on her own.  Sammy’s operates entirely off of donations and serves children with a variety of disabilities.  When Braxton started last August he was crawling and pulling up to stand, but had minimal cruising and no desire to walk.  In 9 months, Braxton has made tremendous progress! He is walking with minimal assistance, cruising longer distances, eating by mouth, understanding language a lot more, and just overall growing every day.  The staff is constantly pushing the kids to unlock their full potential and have done wonders for Braxton.  A donation to this organization ensures that other kids can reach their potential as Braxton has and continues to do.

 

 

We appreciate all of you for loving and supporting Braxton along this journey.  While we love the cards and gifts, Braxton already has so much and we would love to spread the generosity.  These organizations have all touched our life in one way or another and it would mean the world to us if you could spare a few dollars to one, two or all of them! I don’t need proof of your kindness, but when you donate to any of the organizations, please make sure to leave a note that your donation is in honor of Braxton so that they know who sent you.

We hope you will join in this mission and open your hearts!

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Texas Parent to Parent Conference

This weekend I had the great pleasure of attending the 9th Annual Texas Parent to Parent Conference.  The TX P2P conference is attended by families all across Texas to find and share resources.  There are also sessions to help families along the journey.  I met so many families and really enjoyed the sessions I attended.  I was able to attend thanks to U.R. Our Hope.  I volunteered to help man the table in the exhibitor room and also be part of a parent panel during one of the sessions and in return my conference fee was taken care of.  Truly incredible.

Thursday, I signed up to attend training to become a Parent to Parent Support Volunteer.  In the training, I met many other families who came in to this special needs journey quite unexpectedly.  As I listened to everyone share their story, it was obvious that although our children all had very different struggles, there were so many similarities in our paths and we were all connected by the love and courage to fight for our children.  I’m so excited to officially be a parent support volunteer.  I feel as though I have grown so much in the past 2 years and have a wealth of resources available to me and would love to pay it forward and help other parents in any way that I can.  I really look forward to receiving parent matches and becoming a mentor to families along the journey on a more personal level.

Thursday evening, I also attended a meeting with Dr. Bruce Cohen where he spoke about Mitochondrial disorders.  It was very informative and interesting to hear from one of the experts in the field.  Dr. Cohen gave a great overview about what Mitochondrial diseases are and some of the advancements being made in the research to help correctly diagnose so many children.

U.R. Our Hope TableOn Friday, I attended several sessions and also sat on a parent panel in one of the discussions.  First, I went to a session on “Grief and Stages of Adaptation” which is a continuation on the training in becoming a parent support volunteer.  The session gave really great insight to the process we all go through when learn about our child’s diagnosis.  Understanding the research behind the fact that all parents do grieve the loss of the life that might have been while coming to terms and building new dreams in the life that is now before us was so helpful.  As we learned about all the stages and processes in which we all go through, I recognized how true they were for my own journey and I know now that I can recognize these stages in the journey of others which will be essential as I help to mentor parents who are new to this journey.

After lunch, I attended the session given by Dr. Mary Elizabeth Parker, medical liaison for U.R. Our Hope.  In her session, she talked about the diagnostic journey and resources for obtaining a diagnosis.  Myself and one other parent were on her parent panel and told our stories about our children and how we finally came to a proper diagnosis.  We were able to share our experience and answer questions for others who are also on the journey.  Dr. Parker talked about several cases she has personally worked on and how the healthcare system failed some of her patients which ignited her passion to help other families so that they don’t have to go through that.  We had some really great questions and feedback from the families who attended the session, and I’m so proud to have been a part of the discussion.  I hope that these families connect with us or find the resources they need to finally attain the peace of mind that we have.

The final session for Friday, was given by our speech therapist and another therapist in Houston about Augmentative Communication.  We are so fortunate that our own speech therapist is so well versed in using Aug Comm with patients and can’t wait to get started with Braxton.  I was excited to attend to get an overview on what options were available and how to get started with the process.  I did learn a few things that I hadn’t already talked to our speech therapist about and hope other parents who attended did too!

Friday night, a few of our friends of U.R. Our Hope went out for dinner to chat and just hang out at a local restaurant.  It’s always nice to attend these meetings and talk with other parents about their experiences.

Dinner with U.R. Our Hope

Dinner with U.R. Our Hope

 

Saturday was a short day for me.  I helped to cover our table in the Exhibitor room while Dr. Parker held another session about Mitochondrial disease and Autism.  I’m sure it was great!

U.R. Our Hope

 

 

I had to leave at lunch to help Joseph DJ a wedding out of town. Needless to say, it was a very long couple of days for me! But it was so rewarding! I was able to make a lot of new connections with other resources and other families who are also on the journey.  I definitely plan to make this conference each year! I’m so thankful to have been a part of it this year and look forward to the new opportunities that have arisen from participating.

 

 

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Reflections on the Journey

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

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

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

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

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

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

Listen here!!

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Invaluable Support

The past 19 months have been quite the journey.  Braxton is not the only who has come such a long way from that first day in the hospital.  We’ve had many physical and emotional ups and downs since day one.  Although I don’t like to discuss those initial feelings often, I think it’s important now so you can understand this post.

SAMSUNG

In those first few hours/days/weeks of Braxton’s life we were so scared and full of uncertainty, and we were also in a very “us” centered world.  It did not matter to us about the countless others who had been or were in our shoes at that time.  Every time someone said “It could be worse” I wanted to punch them in the face…Joseph usually quipped back “Yea, well it could be a lot better too.” Most people didn’t know how to respond so they just stayed silent.  (I suppose that was as effective as a punch to the face.) I’d also cringe as well meaning family, friends, and strangers who wanted us to know we weren’t alone offered their unsolicited advice or story.  In those early days we were inconsolable, no amount of advice, happy-ending story, or tears was enough.  I just wanted my son to be better. I wanted to take him home. He belonged at home. I had another child who also needed me. Why is this happening? What did I do wrong? Everyone grieves differently, and the fact that things weren’t the way we had planned or imagined them to be was certainly reason enough to grieve.  We put on a happy face, pulled ourselves together and visited Braxton daily.  For a while I think I even fooled myself into thinking “I’ve got this. No big deal, I’m good, I don’t need anyone or anything right now.” Once we were able to take Braxton home, caring for him and getting him all the treatment he needed took over my life.  My needs came well below his and often were forgotten and not met anyway, not for lack of trying, but because he needed me around the clock and there was no time (or I didn’t give myself the time) for me.  It wasn’t until Braxton was essentially “stable” that I finally began to settle down and realize that I needed to take care of myself too.  During this time, even most of my family was left out of the loop.  We didn’t tell anyone very much.  Anything that was told was on a very “need-to-know” basis.  I was certainly not as forthcoming with details as I am now in my facebook posts or blog updates.  In fact, it wasn’t until I started this blog that anyone really knew the whole story.  My own family was shocked to learn many of the details…they had no idea what I was holding on to.

Fast forward to the present, and I’ve let go of many of those emotions and I’ve come to really value the stories of others who are on a similar journey. In fact, I now seek them out myself! *Gasp* It took a very long time to finally come to terms with what was going on and to begin to adjust to what was now our life.  Once we finally settled in to a routine and we realized that Braxton was doing better than we all initially thought, the “threat” was removed and I wasn’t as “on edge” and I was able to listen to others.  I slowly began to realize that we weren’t alone and that so many people truly wanted to help us. They wanted to relate, they wanted to understand….I wanted them, no, NEEDED them to understand.  That is about the time I finally decided that I wanted to start this blog as a cathartic release for myself, but to put our story out for others to read whenever they were ready to seek out the information.  Not too long after I published the site, we were invited to join U.R. Our Hope (an organization I’ve grown very fond of that helps those with rare and undiagnosed syndromes) Our PT supervisor is the co-founder and she is the one who invited us to begin attending the monthly meetings they had.  She introduced me to families whose children had similar diagnosis as Braxton and naturally, I found this to be something I didn’t realize I needed.  That once a month lunch/dinner with people who really “get it” was extremely relieving and helpful.  It was the first time I truly felt that we weren’t alone.  I love all of my family and friends, and although well intentioned, many will never truly understand what we go through daily because they’ve not lived it.  Being able to meet families who are living it was inspiring and hearing their stories and what their kids have overcome really helped me further open up about our journey.

In addition to this tangible support, I’ve sought out many virtual support sites, facebook pages, blogs, and articles.  I’ve joined so many virtual groups and met some really amazing families from all over and I cannot speak enough about how much this has helped.  NOW, the stories from others who have it worse or have been where we are and how they got through it is so meaningful to me.  NOW, I want to hear all of these things, I want to read as much as I can…I want to know we’re not alone.  The stories are all so inspiring to me and if someone feels the same about us, I’m humbled and glad we could be that for you.  One of the online groups I’ve really taken to is “Mommies of Miracles” which is probably the largest virtual support group around for mothers of children with special needs.  Their facebook page is extremely active and you can literally have questions answered within minutes whereas answers from doctors can take hours or days. (Of course, for most things you should really consult a doctor, but MoMs helps to give you ideas or questions to ask the doctor right away) MoMs also has regional groups you can join and of course I’ve joined the Texas Mommies of Miracles and have been able to “meet” and “talk” to mothers from all over the state.  We’re all on the same journey, trying to do what is best for our kids.

I often speak about Braxton’s happy demeanor and how easygoing he is, and to some it seems out of character for a child who has “gone through so much” to be so happy, but one thing I’ve learned from MoMs is that ALL of these children are happy.  Sure, some may have more mood swings than others or have a crying hour..err hours? but those moments of just pure happiness from our children is a true miracle.  They are just like any other child who needs love and attention.  They have REAL feelings just like any other child.  They are all so easy to love and bring light in to all of the lives that they touch.  Recently, the admins for Texas MoMs put together a slideshow of all the Texas Miracles and as I watched it, I couldn’t help but smile from ear-to-ear.  The pure joy on these childrens faces is so inspiring.  Despite their struggles, despite their challenges, they all know love and happiness and it is now displayed for all the world to see. I’d like to share the slideshow with you.  I hope that these smiles inspire you to fight on despite whatever struggle it is that you are facing.  No matter how big or small, remember these smiles.  If these kids can smile through some of the toughest struggles, you too can get through anything that you are facing.

 

I am ever so thankful for all of the invaluable support we’ve received from day 1.  If you happened to be around at day 1, we probably weren’t very nice, and we’re sorry.  For anyone who has offered a story, a congrats, a share, a ‘like’, words of encouragement, prayers, well wishes, a hug, a personal message…we thank you.

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Happy Saturday!

A happy Saturday it has been indeed!! The kids were both wide awake at 7:25am and mom never stood a chance.  I definitely miss sleeping in, but waking up to the cutest smiling faces takes the sting out of being up so early.  We played laying down in bed for a little while before we actually got up and moving. Because, no matter how cute those smiles are, this mom isn’t jumping out of bed at 7:25am!! Hahaha

We did meet up with the U.R. Our Hope group at Iron Cactus for some delicious lunch and great conversation about this journey we are all on.  I love the support that we have from friends and family, but it really is something else when you can talk to people who share your experiences. It was really nice to talk to other people and meet other kiddos in our boat.  We also got to see our Speech therapist and Physical Therapist’s supervisor. They’re so wonderful. I love them so much and they genuinely care for Braxton. I love people who work with kids and actually have a passion for the kids and aren’t just present for a paycheck. I’m so fortunate.

Welp, my football game didn’t go so well to say the least. Time got away from us at the restaurant and I missed the entire game. It was probably for the best haha Upset about the loss, but not nearly as much as I would be if I had seen the game!

We got home and spent the afternoon playing at home and watching some TV. It’s so fun to be able to interact with Braxton. I love that he can respond and play with us. Rain has been off and on all day, so looks like it’s dinner time and then we’ll cuddle up and watch a movie until bedtime. I hope the rain doesn’t spoil our plans for tomorrow!

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