Tag Archives: faith

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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He knows the plan He has for us

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 [New International Version]

 

Several weeks ago, we had a guest pastor give a sermon at Church, and it’s only now that I’m realizing that God was speaking to me then and continues to do so now.  The sermon was about trusting God and having faith in His plan for us.

The pastor compared God (the parent) speaking to us (the child) in much the same way we as parents speak to our child.  The pastor’s example was him calling his daughter away from the television.  He asked his daughter once, she did not listen.  He called her again, she acknowledged and slowly started toward him, pausing every couple of steps to look back at the television.  He called her a third time, a little more sternly and it was only then that she hustled over to him and obeyed.  We are very much like our children when it comes to following our Father when He calls us.  When God speaks to us, we may acknowledge Him, but we also question Him and whether or not we should follow what He says.  Not necessarily to be disobedient, but because we do not have faith or the courage to make the change in that moment.

A second example the pastor shared was a moment when God spoke to him to make a career change.  He said he heard God tell him that he needed to quit his job TODAY.  Naturally, that is much easier said than done.  The pastor had a new wife and child on the way and anyone who is married will tell you, a husband coming home to his wife saying, “hey, so I quit my job today, because God told me to do it,” isn’t going to fly over too well.  Pastor did speak to his wife and they prayed and ultimately he decided not to quit his job, yet.  Long story short, he interviewed for a new job opportunity and there was another pastor in the room who stopped him during the interview and told him that he knew he [our pastor] was being disobedient.  That he knew God had spoken to the pastor but he had not yet obeyed him.  Whoa. That was God finally yelling at His child, stopping him in his tracks and telling him what he needed to do.  The pastor went home and quit his job.  Within a week, the company he had interviewed for called him back and he got a new job that paid far better than the previous one.  It was only then that he knew he should have listened the first time God spoke to him.

There have been many times in our journey where we have both felt like God was speaking to us.  It is not always about making a change, but He does or says things to us to let us know that He is right here walking right beside us.  He consistently puts people in our lives to guide us and take us exactly where He wants us to be at that point in time.  I have spoken on this before, at a time where my faith was already being tested, at a time when we had not been to Church in quite some time.  It was not too long after, that God called us to come back to Church.  Joseph called me from work and told me that he felt like God was trying to tell him something and that we needed to go back to Church.  So we did.  We went back exactly when we needed to.  We have grown so much and our faith has been restored.

I’m not saying we are spouting off Bible quotes or living a life of a perfection now, but we are trying to do better.  I am now recognizing God’s presence in our lives even in moments that seem hopeless.  I wrote at one point about longing for Braxton to speak and it wasn’t but a week later that out of nowhere, Braxton looked right in to my eyes, grabbed my face, and pulled his little mouth to my cheek to give me a kiss.  It was in that moment that I felt God telling me that if I just slowed down and paid a little more attention, I could see and feel my little boy speaking greater volumes than his voice ever could.  Braxton ‘tells me’ he loves me all the time by doing exactly what he did in that moment.  His little hands reach up to grab my cheek and he ever so softly comes forward to give kisses.  He does not have words, but God has shown me that he can speak right to my heart.

More recently, God has shown himself to us through this change in daycare that I wholeheartedly believe He called us to make.  God spoke to me through one of our therapists who recommended we make the decision to place Braxton in a daycare that could foster his growth and help him fulfill his potential.  (Dad calling his child to step away from the TV). We somewhat talked about it, and thought, “Hey we are all happy and Braxton is doing well.  And really, the extra cost is not a desirable option at this point.”  (We stayed at the TV).  It wasn’t but 2 weeks later that we learned our daycare would close.  Immediately, I thought, “Ok God, I get the message!” (Dad calling us again.)  We began calling around to different centers including the one that was originally recommended all the while trying to figure out an option to keep him where he was or even keep him at home.  (We heard dad and we’re slowly turning to him, but still pausing to look back at the TV).  When we were finally all out of options and decided to tour the center that we ultimately decided on, the choice we needed to make was clear.  I knew at that moment that if this was what was meant to be, that God would make sure everything fell in to place and help us both mentally and financially.  I put my faith in Him and trusted that he would see us through. (Thankfully we made it to dad before he had to yell at us!)

 

Happy BraxtonFinally, it has been one week at the new daycare and we are very happy with the choice we had to make.  We are all still adjusting, but Braxton seems to be very happy and his needs are definitely being met.  The teachers are still giving him time to explore and adjust, but they are wearing him out!  He’s actually taking regular naps at a scheduled time, and sometimes he can’t even wait that long!  Yesterday, the Executive Director caught me as I was leaving the daycare to check in with me to see how we were doing and if everything was going okay.  I told her we were very happy with our decision and her staff.  They are all very friendly and have communicated with me quite a bit about Braxton and getting to know him.  She told me that her teachers are absolutely smitten over him and she often has to get on to them for stopping in to visit him too often.  He’s quite possibly the hardest child NOT to fall in love with.  Having worked in a daycare, I know that all children find a way in to your heart, but there is always that one child you bond with more than others, and Braxton seems to be that child for so many.  The director also talked to me a little bit about some of the plans the teachers have for Braxton.  Sitting at the TableShe said one teacher had come to her in the morning and excitedly handed her a list of equipment she wanted for Braxton to keep him happy and comfortable.  Some of the things included a Tumbleform chair for feedings so that if he fell asleep he would still be upright and comfortable during his feeding.  I am so thankful they have already fallen in love with him and are so enthusiastic about helping him reach the potential we all know he is capable of achieving.

And call me crazy, but in just one week I have seen changes at home as well.  Braxton is standing  a lot more and trying to cruise around the house.  He’s been doing this ‘knee-walking’ thing where he walks at a kneel instead of standing.  He had done it quite a bit here and there, but only a few ‘steps’ and then he’d crawl.  This week, I’ve seen him try to ‘knee-walk’ much longer than usual.  Yesterday, he spent about 15 minutes chasing a toy around both walking on his knees and crawling.  Here’s a video of course 😉

 

Isn’t that awesome!? I’m sooo excited for Braxton.  It’s clear that he will walk much sooner than we think.  I can’t attribute that all to the new daycare, but I’m certain it’s been a motivator even in just a week.  Braxton is in a class with all boys who are high energy and always on the move.  Surely he is sitting back looking at them thinking, “Hey I can do that, too!”  He’s also been babbling more.  Every day this week when I picked him up he started babbling from the back seat.  I’ve even heard some new sounds.  It may be a while before I hear words, but for now I love the sound of his babbling and I love the special moments we have where he can just look at me and I know and feel his love for me.

When God spoke to me and told me this is what we needed to do, I was very hesitant.  Hesitant because of the extra money it would cost and because I didn’t want to lose the people we had grown to love so much and who had grown to love Braxton so much.  Upon touring the new facility and hearing all of the great things other parents and our therapists had to say, I felt God’s presence.  I felt Him telling me “yes, I know this is going to be difficult and maybe a little scary, but just trust and have faith in Me.  I will not steer you wrong.”  And He hasn’t.  Every day is further proof of God’s greatness and His grace upon us.  We are beyond blessed each and every day.  Part of me is picturing God sitting with his feet kicked back and looking down at me saying, “See, I told you I knew what I was doing.”

Learning to listen to God and trust in His word is sometimes hard to do, and we are still learning every day.  Much in the same way our children have to learn to listen to us and trust that we actually know what we’re talking about.  We tell them not to touch the stove because it’s hot and they will get burned, but they touch it anyway.  We give dating advice in hopes to spare them a broken heart, but they don’t always listen.  One day they look back and realize their parents weren’t crazy and knew exactly what they were talking about.  God tells us to trust in Him and the plans he has for us, but because we are still trying to walk our own path, we often fail to recognize that He knows what is best and is simply trying to guide us to the right path.

Though we walk with trepidation, our faith will not waver. We know that our future is full of hope because we do not walk this journey alone.

 

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Full of Gratitude

We are now 2 weeks post-diagnosis.

Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.

While nothing has physically changed, our mind state seems to have shifted.  2 weeks ago, our diagnosis was met with trepidation.  We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.

2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it.  When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention.  That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.

Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me.  And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey.  Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another.  I also found a Facebook Group with over 600 members.

I am repeatedly amazed at the advancements technology has made.  10 years ago, I would not have imagined getting “connected” so quickly.  I seriously don’t know how I would have handled this journey without technology.  The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.

I’ve spent the past couple weeks researching and taking in as much information as I can.  Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness.  Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it.  It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.

The reality is that most of the research is outdated.  The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless.  Every child continues to write their own story, and I have no doubt Braxton will do the same.

Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off.  And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton.  He has been babbling like crazy in the past few weeks.

You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities.  I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.

One thing I’ve confirmed is that the feeding difficulties usually DO resolve.  Many of the parents I’ve talked to say their child did not need a feeding tube forever.  Most say by 5 or 6 their child was eating very well.  Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.

I’ve also learned that Braxton’s lovable social nature will never go away.  I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.

SillyMonkey.jpg

Making monkey sounds with mommy is hilarious

I’ve also ‘met’ a woman who is in her 30s and living completely on her own.

Are these things true for all children? Probably not.  Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.

Are there still hard times ahead? Absolutely.  The lifelong battles Braxton will have to face aren’t going anywhere.

The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing.  Some days will still be more difficult than others.  Again, not every day is good, but there is something good in every day.  And for the days that aren’t so good, I hold on to hope.  I remind myself of these positive experiences of other families.  I reach out to the new support network I have to find the “seasoned” mom to help me through.  I cannot express enough how truly thankful I am to have such a network in my reach.

20130502-100553.jpg

The possibilities are endless, and Braxton intends to prove that.

So, so much gratitude.  My heart is full again.

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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. ❤

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