Monthly Archives: April 2013

The Liebster Award

So, I’ve been on hiatus for some unknown reason.  I have plenty to write about, just haven’t sat down to write I suppose.  Anywho, I actually received TWO nominations for the Liebster Award from fellow bloggers! And I decided that accepting the nominations and passing them on would be a good icebreaker (“don’t call it a comeback!” kudos if you get that)  😉 First, thank you to I can say mama and Still Playing School for nominations and your great questions! I really am touched when I receive awards from fellow bloggers and a real sense of knowing that others actually read what I write! Wooo! Plus, it makes me seem like a “real person” with my own life haha

Liebster Award

Alright, so here are the rules:

1. Answer 11 questions posed by the blogger bestowing the honor
2. Post 11 random facts about yourself
3. Pass the award along to 11 additional fellow bloggers
4. Pose a set of 11 questions to those bloggers

So, you get 22 answers since I’ll answer questions from both bloggers, but then you get 11 of everything else! haha (mostly because I’m not sure I can come up with 22 things about myself anyone really would care to know and 22 questions for anyone else to answer just isn’t fair!)

First, the questions from I can say mama:

1. Which is the first song on your playlist? Currently, it’s “Cinderella” by Steven Curtis Chapman – tearjerking father/daughter song! Helped DJ a sweet 16 yesterday, and that was the father/daughter song we had to download at the last minute.
2. Do you like to shop online or do you prefer to shop “offline”? Definitely “offline” for clothes. Anytime I buy clothes online I’m disappointed. I really need to be able to try them on. I do some online shopping for kids toys and stuff, but not much.
3. Are you a talented singer? Sadly, no. I wish I was though! Then I could be on “The Voice” and have Adam Levine and Usher fight over me! *swoon*

Tell me that's not every girls dream to have Adam or Usher turn around with a sign that says "I want you"

Tell me that’s not every girls dream to have Adam or Usher turn around with a sign that says “I want you”

4. Do you like sports? If so, what do you enjoy watching or doing the most? Yes! I LOVVVVEEE college football!! A true Texas Alumni – love my Longhorns. \\m// Hook ’em Horns!
5. Who is your favourite actor/actress and why? I have to go with Denzel Washington. There isn’t a movie of his I’ve seen that I didn’t love. He is such a great actor!
6. Which is your favourite drink? I’m addicted to Dr. Pepper!!
7. Are you superstitious? Eh, I’d have to say that I can be at times.  I used to be much worse, but I’ve “grown up” so to speak and realize a lot of it was just nonsense. (Don’t tell my grandma!)
8. Name something you are really bad at. Anything requiring musical talent.  I can’t carry a tune to save my life and I wish I could play an instrument, but all I’m good for is “Are You Sleeping” on the piano :/
9. Name something you are really good at. Writing! 🙂
10. What is your favourite thing about blogging? I love the sense of community! I love reading other blogs and forming relationships through the comments and sharing stories.  You really get to “know” people and have a genuine interest in what they have to say. It’s great.
11. What is your worst habit? Procrastination. Always has been. I wait until the absolute last minute for everything. Although, I have gotten a little bit better since Braxton came along. I really do stay on top of things to make sure he has everything he needs and all the appointments are squared away.

And now the questions from Still Playing School:

1.  How/why did you start blogging? It really was mostly to keep friends and family informed of Braxton’s progress. I got tired of making 15 phone calls answering all the same questions. Since we all are online, I felt it was easiest to just put the info out there for them to read.  It’s really turned in to much more than that. It’s like therapy for me now. I write through my emotions and frustrations. I’ve “met” some other awesome mommy bloggers and built a new little community/support group for myself
2.  Do you have any pets? We have a boxer/bulldog mix, Roxanne, but she stays with my mother-in-law for now. Our landlord didn’t allow dogs when we moved, so she’s crashing with grandma.

Totally not posed. She's the best dog ever.

Totally not posed. She’s the best dog ever.

3.  What’s the best book you’ve ever read? Eeeek! I don’t read a whole lot anymore.  I used to devour books, but since I had to read so many for school, I never really found the time to read for fun.  I did read the “Hunger Games” series and really enjoyed those.  Not sure about “best,” but that’s the most recent!
4.  What is one thing you will never reconsider or change about yourself? Hmmm…..I’d have to say the fact that I voice my opinion.  I’m very straightforward and will speak up when needed.  Especially when it comes to my kids.  I will always, always advocate for them and make sure they know mom will stand up for them.
5.  If you are in a relationship, how did you meet your significant other? We met through a mutual friend. The 3 of us all went out to dinner and you’d never know there was a 3rd person there. Joseph and I hit it off right from the start 🙂

One of my fave pics of Joseph and I <3

One of my fave pics of Joseph and I ❤

6.  If you read my blog, how did you find it? I started following after you commented on a post on our blog!
7.  Which celebrity do you loathe? The Kardashians! Ugh, seriously, why are they even famous?! I don’t understand!
8.  What are your weekend plans? Oops, it’s the end of the weekend, but this weekend we hung out with the kiddos, DJ’ed for a Sweet 16 and visited my in-laws today.
9.  What did you eat for breakfast? I’m really not a breakfast person, so didn’t eat anything until lunchtime.
10.  When do you think you’re were happiest in your life, so far? Oh man, that’s tough.  I think every day brings new happiness and joy in my life.  There are always ups and downs throughout life, but you can always find happiness.  I still think the best days of my life are ahead of me 🙂
11.  What inspires you? Cliche as it may sound, my kids. I love how much they teach me about life and myself each and every day.  The obstacles they face and continue to overcome truly inspires me.

*whew* ok that wasn’t so bad.

11 Facts about me

1. I am addicted to Target. I swear, no matter what I go there for, I can’t get out for less than $100!

Happens every time!

Happens every time!

2. I had Lasik eye surgery about 4 years ago.  I couldn’t see much of anything, and “I can see clearly now, the rain is gone” haha jk But in all seriousness, I really can see well now.

3. 90’s- early 2000’s music is my guilty pleasure.

4. Especially 90’s- early 2000’s boy bands. Can’t get enough of N’SYNC, Backstreet Boys, O-Town…etc Yes, I still know every word and sign my heart out. In my car. With the windows up.

5. I eat wayyyy too much. Seriously! I feel like we’re always eating. As I sit here and eat this slice of delicious pizza. At 11pm! Yikes! I’m surprised I don’t weigh about 300 pounds. Keeping up with the kids keeps most of the weight at bay, I think.

6. I dabble in Graphic Design. I wish I had time to take some more classes, but I think I do alright! I designed the header for our blog 😉 I’ve also done invitations, business cards, graduation inserts…different things, mostly for family and friends. You need anything? hehe

7. I’m also addicted to Dr. Pepper! I know, I know it’s terrible for me (on top of eating pizza at 11pm) I assure you though, the kids do NOT eat as bad as I do, nor do they drink soda! Plus, if Dr. Pepper is the worst thing I’m addicted too, I think I’m doin alright

8. I should be sleeping. I find myself staying up later and later to watch “real” TV (a 6 year old is in charge of it until she goes to bed) or blog or do whatever else needs to be done for the next day (Braxton’s blend, laundry, etc) or just sit around and unwind

9. My least favorite chore is a tie between laundry and dishes.  Seriously, why is there no fold button on the dryer!

10. My Pinterest is full of funny e-cards, cheesy quotes, inspirational sayings and other things of the sort.  I know other moms are busy posting recipes and cool projects for their kids, but I’m just there for laughs haha (with the occasional pin of a cool craft for the kids I may or may not ever get around to do doing)

11. On that note, I don’t think “Pinterest Mom” really exists.  All the pictures of perfectly crafted delicious looking cupcakes and super cute crafts were in no way done by real moms with real kids hanging off their hip…there’s just no way!

11 Questions for the Bloggers I nominate

  1. What is your favorite thing about blogging?
  2. What TV Show is your guilty pleasure?
  3. What song/genre of music is your guilty pleasure?
  4. Money is no object, what would be your ideal vacation?
  5. What is your favorite movie? Ok, Ok, top 3 favorites?
  6. Describe your life with a movie title!
  7. What hobbies do you have (aside from blogging!)?
  8. What talent do you wish you had?
  9. If you could be a superhero, who would you be? Why?
  10. If you had a chance to have your own reality show, what would it be about?
  11. What’s the worst job you ever had?

And finally, the blogs I nominate for the Liebster Award! [Some that I want to nominate have already received it previously, sooo may be less than 11]

Jaxson’s Journey

God’s Mercy Displayed

All That Hath Life

Coconut Speak

Baker Adventures

Heart of Hope

Uncommon Sense

Confessions of a Sleep Deprived Momma

1 Comment

Filed under Life

Some Much Needed Fun

With so much turmoil in the world and our own stressful and emotional week, I was very much looking for a distraction to keep my mind off things.  Today, we joined our amazing friends of U.R. Our Hope at Morgan’s Wonderland in San Antonio.  While I wanted a distraction and to not think about our very recent diagnosis, instead I found myself willingly talking about it with the other families and by the end of the day, I had a reminder of how wonderful our life is and the gift we have been given.

After 21 months of being undiagnosed, we had truly formed a bond with many of the families we met who were on the same journey, so they had complete understanding of what we were going through every step of the way.  In U.R. Our Hope we have a second family and a strong support group. I love our monthly meetings and getting to see everyone and how well the kids are doing and just getting to talk about everything.  Although we have a diagnosis, we’ll still be very much a part of U.R. Our Hope and they will always have a special place in my heart for helping me heal when I didn’t even realize I needed to be.

Having formed real friendships with some of the other moms, they were genuinely interested in hearing our news about the diagnosis and talking it out with me.  The more I talked about it and said everything out loud, the more my understanding and acceptance grew.  Yes, there is still a long road ahead and I still have many questions, but for now, I’m content with the answers I have.   The other moms also helped me to see the good and hope that exists within our diagnosis.  I needed that outside perspective and I’m so thankful to have gotten it today.

In addition to talking, as I watched Braxton laugh and play I was reminded of my own words to embrace this life we have been given and take it day by day.  This loving and joyful child in front of me is such a gift and he is going to write his own story.  Everything is absolutely going to be okay.

I saw so much joy today and my heart is full again.  Not just Braxton, but the smiles on all of the other kids in our group was exactly what I needed.  Braxton loved the park and we’ll surely be going again! I was a little worried at first if he’d like it or even be able to do anything, but he was able to do everything! We rode on the carousel, he got to drive a car, he LOVED the swings, we rode a train through the park, and his favorite was the Xylophones set up in the middle of the park.  Braxton definitely has the love of music in his genes.  He was in the best mood today, and at lunch time we played peek-a-boo!

I’m so grateful to have a place like Morgan’s Wonderland to take him to! It was a fantastic day!

Picture Overload from today 🙂

2 Comments

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

A New Journey Begins

After 21 months of searching, hoping, and waiting for a diagnosis, we finally have an answer! [And a whole lot of questions.] Today has been quite the rollercoaster of emotions for us all, and I’m still learning and processing all of the information, but here’s what I know now.

The official diagnosis is: Rubinstein-Taybi Syndrome. [I’ll get to the explanation in a bit.]

If you do any research, you’ll find that making this diagnosis is usually pretty straightforward, but in Braxton’s case, there were also some other factors that made finding this diagnosis somewhat difficult.

Today, we learned that Braxton has a mutation/variance in 8 different genes that we know the functions of AND contribute to his characteristics.  There are at least 20,000 genes in the human body, and current technology only really knows what about 4,000 – 5,000 of those genes do.  It’s possible Braxton may have other variances in genes that either do not further explain his characteristics or that we have no idea what that variance means.  We are now waiting for the expanded report that will tell us any information of the other genes that were tested, but for now, it may not mean much of anything until the science catches up to us.

In addition to Rubinstein-Taybi Syndrome (RTS), the test found a mutation in a gene that causes Cornelia de Lange Syndrome (CdLS). However, it turns out that I (mom) also have the same mutation in my genes, and since I’ve not had any issues related to the syndrome, it’s unlikely that Braxton is actually affected by it.   [This is one area I have a question on. Doesn’t quite make sense to me, so I’ll report back later on what that really means.] The crazy thing about this is that I’ve had multiple people contact me and ask me specifically about these two syndromes and whether or not Braxton had been tested for them.  Our geneticist mentioned CdLS at our VERY FIRST VISIT, but discounted it because Braxton wasn’t “as hairy as those individuals.” When I mentioned RTS, she discounted it because his thumbs weren’t really as broad, his nose was different, and his hearing loss was too profound to be RTS. As he got older, and the more I read, the more I saw him grow in to the diagnosis.  I truly felt in my heart it HAD to be one of these two, and lo and behold, it was. So, THANK YOU to the individuals who reached out to me and brought them both to my attention.  And thankfully, because I have researched both of them, I wasn’t completely blindsided today. I had at least heard of RTS and read up on some of the symptoms and expectations, but hadn’t committed them to memory.  [I’m working on that now, though] Braxton also tested positive for another mutation that apparently mom has that would point to Genitopatellar Syndrome, but again since I don’t have that syndrome or problems related to it, it’s not Braxton’s diagnosis.

Braxton also tested positive for a variance in 3 different genes related to hearing loss and deafness. Aha! That would be why Braxton’s hearing loss is more profound than other kids who have RTS.  For one of those genes, mom and dad both tested as carriers, which means that if we had another child, there may be some issues with hearing loss or deafness.

There were a couple other variances that were noted, but didn’t really help us any with his “clinical picture.” We also found out that Braxton has a few enzyme deficiencies which make it difficult for his body to metabolize certain medications, luckily he is not on any of them (he was on one, but not any longer), but it’s important for us to remember as he gets older.

That’s the summary on the test results. Now, back to the official diagnosis.

Our doctor gave me a folder full of articles about Rubinstein-Taybi syndrome that I’ve read and highlighted and made notes all over this afternoon. For the most part, Braxton matches a majority of the symptoms. So, what the heck is it? First of all, in almost all cases, RTS is a RANDOM mutation, meaning that most cases happen without anyone in the family ever having it before. It also means that neither mom nor dad were a carrier, so the chances of having another child with RTS are less than 1%. If Braxton were to have kids, his chances of passing it on are about 50%, unfortunately, most males with RTS do not have children.  RTS is pretty uncommon and occurs in 1 in 100,00 to 1 in 300,000 people.

RTS is characterized by several very distinct features. They include:

  • Broad thumb and great toe
  • Downward slanting eyes
  • Beaked nose (tip of the nose slants down)
  • Heavy/Highly arched eyebrows
  • High arched palate
  • Long Eyelashes
  • Small Head
  • Small jaw
  • Prominent Forehead
  • Broad nasal bridge

One of the most distinct features, is the smile.  “The grimacing or unusual smile with nearly complete closing of the eyes is almost universal.” [From an article by Raoul C.M. Hennekam on RTS]

Other signs and symptoms: (these include some less common signs, but they are ones Braxton has)

  • Eye Anomalies (tear duct obstruction, coloboma)
  • Variety of Congenital Heart Defects
  • Joint hypermobility
  • Constipation
  • Feeding difficulties
  • Sleep apnea
  • Vertebral anomalies
  • Kidney abnormalities
  • Agenesis or hypoplasia of the corpus callosum
  • Moderate Intellectual Disability
  • Delayed development of motor and cognitive skill
  • Short stature
  • Benign tumors

Many kids with RTS learn to crawl around 19 months, Stand at 29 months, and walk at 35 months.  These are rough estimates, but on average most report their kid learning to walk at about 2 1/2 years old…Braxton is almost there! He was cruising quite a bit at the dr today, so I don’t think walking is far off.

First words are usually spoken at about 2 years old and 2-3 word sentences take as long as 4 years and sometimes up to 7 years.  Some children remain relatively non-verbal.  Many of the articles I read reinforced the importance of Speech Therapy and many reported children learning sign language and having the ability to sign and speak.  Some may also use alternative technologies (like an iPad) to communicate.  I am SO extremely thankful we have a fantastic Speech Therapist on board with experience in AAC to help us on this journey.  It will be a little while longer, but Braxton should be able speak! Yay!

Another reported potty training being reached at about 5 years old.

I guess the short story is, Braxton is going to be able to walk and talk, many of the issues he may face we are already monitoring, speech therapy will be key in helping him communicate, physical and occupational therapy will continue to be necessary to help make progress, most individuals have their feeding issues resolve so he may not need his feeding tube forever, Braxton will have an intellectual disability and require special education courses when (not if) he goes to school, and he will reach adulthood and his life expectancy isn’t any “worse” than normal for any “typical” individual.

It’s a lot of information, and a lot of it seems far worse than it probably really is.  Only time will tell what our experience will really be like.  I am so thankful to have a diagnosis now. Thankful that there IS research available for it, a few support groups, and that we are already ahead of the game with many of the services he needs. Going over the “things to do after a diagnosis” and we’ve checked off most of them.  There are a couple things we need to do now that we have a diagnosis (like a sleep study to check for sleep apnea), but not anything totally life altering.

Ohhh, I left out something.  Almost all of the articles I read, noted that parents said their children were easy-going, very happy, social, and lovable babies. One said, “they have an absorbing smile that has been described in reports as ‘grimacing’, but in reality their smile radiates the love and acceptance that these children have for everyone around them.”  This is no news to us. 🙂

Please don’t feel bad, or sorry, or take pity on us.  Yes, some aspects of the syndrome are difficult to take in, but at the end of the day, Braxton is our son FIRST, a child with RTS second.  While many of the characteristics describe Braxton’s experiences thus far, he is sooo much more than a diagnosis.  Like I said before, he is an extremely happy little boy who exudes joy and brings light into all of the lives he touches.  That’s never going to stop. Today, a new journey begins. A journey full of hope and endless possibilities.

A smile full of hope and love <3

A smile full of hope and love ❤

27 Comments

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

The Difference a Day Makes

Gah, I am a wreck this week! Tomorrow, we finally see Genetics again to go over the results from our Exome Sequencing that we had sent off back in December, and I’m all over the map with my emotions about it.  Tack on following the heartbreaking story of Gavin Leong, news coverage on the explosions in Boston, trying to hire new help in my office, all while Joseph is gone at work and I don’t even know how I am able to think clearly!

Slowly, things are starting to work themselves out.  Joseph has a better idea of his work schedule and should be home soon for his regular time off so I can get a schedule going again (he’ll be here for the appt tomorrow, but then it’s straight back to work).  I finally hired a new person who I think is going to be a great fit so I don’t have to go through the hiring process yet again, and I just stopped watching the news and clicking links because my heart just can’t take anymore.

With a few weights lifted, my focus is now on tomorrow.  Tomorrow, may finally bring us long awaited answers, yet leave us with a million questions I’m sure. Spent this week trying to make sure our medical binder is in order and writing down any question I can think of should we get a diagnosis, and questions of the next steps should we NOT get a diagnosis. How great it would be if we were part of the 20% who receive answers from this test, but 80% is a big number and far more likely. I am hopeful, but preparing for both scenarios.

Tomorrow, we may find out more than we know what to do with.  We learn a diagnosis, whether this was a random gene mutation which would tell us the probability of another child (should we decide to have one) having the same syndrome, and a few other things that I can’t readily recall at the moment.  Needless to say, it’s a huge day and a very important appointment.

Tomorrow, things could be completely different. We could have a reason behind all of the issues little man has had to face so far and an idea of what the future could bring.  Do kids with this syndrome talk? How is their cognitive ability? Likelihood of childhood cancer? Other health issues we need to watch for? Soo many questions.  I know that only time will tell and there is really no way to predict the future, but some preparation would be helpful.  Knowing now what to prepare for and how to help my son and how to help my daughter understand, all things I may actually have some ideas about tomorrow. Hey, we might even have to change the name of our blog?! Living with ___ syndrome??? (Hopefully I’ll come up with something better than that, but my creativity is a little bogged down at the moment)

You know what won’t happen tomorrow? He won’t magically be cured. He won’t take off running and talking. (That’s coming, but not tomorrow.) Nothing about his treatment is going to change.  He is still going to need all of the therapies that we thankfully already have in place.    All of the doctors we already have on board will remain the same.  We may even add a doctor, and the diagnosis may even help the other doctors prepare their treatments better, but they will remain the same.  We are so fortunate to already have a fantastic team of doctors and therapists.

So, why does a diagnosis even matter? On paper, it matters. For insurance, it matters.  For services, it matters.  “Unspecified genetic syndrome” only gets you so far, and to lose any of the doctors, therapies, and services we have would be detrimental.  Braxton has come so far and is doing so well and an official diagnosis would only ensure that he continues to get the treatment he needs.  Some guidelines and expectations would be nice to have as well.  Another big thing would be more support groups.  Being able to find a group of other parents going through the exact same thing.  Being able to see how their children are doing. Having a “seasoned vet” help me when I have questions.  Has anyone reached adulthood with this syndrome? Those kinds of things would be great to know to inspire more hope for us, to help me through the bad days. Knowing that despite everything, it’s all going to be okay.

Most importantly, tomorrow, I’m not going to love my son any less. He isn’t going to be some completely different person. He is going to continue to make progress and exceed expectations.  He is going to be the same joyful, lovable little boy that brings light into all of the lives he touches.

Braxton and big sis <3

Braxton and big sis ❤

Tomorrow, everything could be completely different, yet exactly the same.

3 Comments

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

The Power of Community in Blogging

In the past few days, I’ve witnessed something truly amazing in light of probably one of the most horrific stories I’ve read to date.  I recently started following Chasing Rainbows after seeing her blog nominated for Parent’s Magazine’s mommy blogger awards.  Her son is also undiagnosed, so I felt an immediate connection.  As I read through her pages and her posts, her writing really drew me in, and I’ve been following ever since. Her blog was nominated for the “Blog Most Likely to Have You Reaching for the Tissues,” and trust me, you’ll want to have tissues (an entire box) handy when you head over there to read her last few posts.

On Wednesday, I noticed a facebook update from Kate (Author of Chasing Rainbows) that said her son, Gavin, was being airlifted to the hospital because he stopped breathing. My heart fell.  Many families of children with special needs spend far too much time in the hospital due to their child’s illness.  I said a prayer for her and hoped everything would be okay and followed closely for more updates.  Fortunately, for us, Braxton *knock on wood* hasn’t given us too many scares.  The last time he did, he had a 4 day hospital stay due to pneumonia and just that short time was extremely difficult for me.  Watching him literally turn blue and being put on Oxygen is something I never want to see again, but that doesn’t even begin to compare to what Kate is going through.

Late Wednesday, errrr early Thursday actually, Kate updated her blog with this post. She had throughout the day posted updates on her son that he had suffered multiple cardiac arrests and was in critical condition.  After reading her post, I could barely breathe.  The day started out with Gavin waking up with terrible allergies. As their morning progressed, Gavin worsened very quickly.  By the time she got him to the local ER he had had a seizure and gone in to cardiac arrest.  They got him “stable” enough to airlift him to a better equipped hospital. I was baffled.  Allergies.  Something we all deal with. Something Braxton himself struggles with.  Poor kid is always so congested.  He is also undiagnosed, just like Gavin.  Although Braxton doesn’t share all of Gavin’s symptoms, in my heart, I feel like this could have been my kid. It could have been any of our kids.  Syndromes, both diagnosed and undiagnosed, compromise a child’s ability to fight off infection the same way a “typical” child can, but for the undiagnosed child it’s even more difficult because doctors don’t know how to help the child.  Some children with particular syndromes respond better to different treatments…sometimes there is not a “one treatment fits all cure” for illnesses, it very much depends on the child’s system as to what will work.  Not knowing the full story on a child makes it extremely difficult to ensure proper treatment.  This is one of those realities that I try so hard not to think about, but I know it’s something that could happen.

Read through each of the posts on her blog for the full story, but sadly, Gavin was pronounced brain dead earlier this evening and Kate and her husband had already made the decision to pull him off life support if that were the case (brain dead) and donate his organs to help other children in need.  The strength and grace with which Kate has been able to write through this tragedy completely baffles me.  With every post, I have heart wrenching sobs, and I want it all to not be true.  This woman has already suffered so much in her life after multiple miscarriages and the birth of her daughter at 5 1/2 months only to lose her shortly after, and now this.  But still, her faith, her courage, her strength….it defies all odds.

The amazing thing from all of this, is the power of community in blogging.  I found her blog the same way I do many others. I seek out the information, read other peoples posts, read the comments, follow the links to the blogs, bookmark them, check in on them every so often, ‘like’ them on Facebook…the same as many others do.  Many of us who blog, write without holding back.  Our entire heart and soul is all there on the screen for you to read.  I feel like I really know so many complete strangers because of their writing.  When they hurt, I hurt for them too, when they are happy, I celebrate too…the community is truly amazing.  The past few days I have really witnessed this from Kate’s story.  I first saw another popular special needs blogger, from Love That Max, share Kate’s update and offer her prayers.  Then I noticed several other bloggers I follow on Facebook also share her updates.  With every share, Kate gained new followers, new readers, new prayers…I saw her facebook ‘likes’ go from under a thousand to over 6,000 in just days.  All of these people whom she’d never met, were pulling for Gavin, praying for a miracle, praying for her strength, praying for his little brother.  We’re all right there with her, and although we can’t even begin to fathom the pain Kate is going through first hand, we are all heartbroken for her yet have hearts full of joy that Gavin is now set free.  Kate said it best,

Today has truly been the worst day of our lives.  But it’s also been an unexpected gift. Our beautiful first born son was set free.  Now he can talk.  He can run.  He is healed.

To have that clarity, completely astounds me.  I’m not sure I could think that if it were me.  Losing my son without answers is one of the things that terrifies me.  But it’s true, all the things he couldn’t do here on Earth, he can now do in “Heaven’s House” (as Brian, Gavin’s little brother calls it).

Kate, Gavin and her husband, Ed. May the Lord continue to bring you strength and peace through the unthinkable. Thank you for sharing your son with us...  Image from Chasing Rainbows

Kate, Gavin and her husband, Ed. May the Lord continue to bring you strength and peace through the unthinkable. Thank you for sharing your son with us…
Image from Chasing Rainbows

The blogging community (and thousands around the world) pulled together for Kate in her hour of need and will continue as her family grieves and heals from this loss.  It is through this tragedy I’ve learned how connected we all are. I’ve realized the gift I have through writing.  I don’t write to become famous. I really don’t. I don’t write for pity. I write for my own therapy.  My own way of expressing myself in a way I never thought I could.  If any one person comes across my blog and through my writing can be inspired or given hope along their own journey, then that’s truly a gift to me.  As a community, we have the power to lift others, to help them along their journey by sharing on our own, and the ability to share others’ stories in their time of need.  In spite of this tragedy, I’m thankful to belong to such a community.

Tonight, I held my children a little longer as I put them to bed.  Kissed their cheeks and told them how much I loved them, because tomorrow is never promised.  I thanked God that despite our own struggles, our children are doing well. And I prayed for Kate & her husband, and the countless other parents who won’t get to kiss their kids goodnight tonight.

May you rest in peace, sweet Gavin, and know that your story lives on and continues to inspire us all. ❤

3 Comments

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