The Bataille Family – June 2017
This Cute little red head is Camden, you can follow his story at Camden’s Crusade on Facebook.
Camden and his family just spent a week at the Respite House and started our Kids Library which is already full of amazing books!
Camden was diagnosed with B-ALL (B Cell Acute Lymphoblastic Leukemia as well as PANS (an autoimmune encephalitis disease).
Camden is one awesome little dude and we were truly grateful to host their amazing family.
FROM CAMDEN’S MOM: I feel like we’re in a bubble. A bubble of peace and love and pure joy and no worry. Outside this bubble there are bombs going off and tears and strife, but in here it’s nice and safe and comfy. I didn’t think THIS much healing could take place DURING this storm. But it has and it will continue. Making memories to last us a lifetime and respite we so desperately needed (didn’t think we needed it this badly, but alas we did.) Some of Camden’s symptoms returned the days before we left, but we are desperately “ignoring” them in this bubble. Our gratitude to Healing Hearts Respite Foundation is abounding and we are giving back by building a library at the beach house for rainy days.
Oklahoma to the Outerbanks
In trying to figure out how to say goodbye, how do you live?
What do you pack for what some say will be your “last family trip?”
How do you get on an airplane, fly hundreds of miles, when your eyes blur with tears, making it difficult even to read the instructions to your next gate?
How do you smile and put on your game face, while everything inside you is twisted and wrenched making it near impossible to catch your breath?
You put one foot in front of the other.
You take one step at a time.
Until finally… you arrive.
To get us to that point though, I need to fill in the missing blanks.
Through, what some may call, coincidence, or even fate, several months ago a miracle began to unfold as I reached forward to answer an incoming customer call, something I do hundreds of times per week.
I have thought back to that October day many, many times over the last several months, smiling, I know there was nothing happenstance about the direction of that call.
There’s a saying I’ve heard; a coincidence is a miracle in which God chooses to remain anonymous.
I agree 100%… He used ordinary people to become extraordinary heroes to our family.
My customer was, like me, a mother. Purchasing items for her home, while making sure that the sensory challenges her child deals with would work with the fabric and textures she chose. As I listened, I honestly have to say, that I felt a drawing to her as a mother. I, too, have a child that is bothered by scratchy, uneven, textures. I felt in my spirit, to share the purchases in the same line she was considering, I have myself made, and that works well for my son.
I’m embarrassed to say; I almost stayed silent. Once, twice… not until I felt my heart prompted the third time and an opening presented itself did I speak up to share my information, that’s when I’m not certain, but I believe, this woman listening with her heart, heard the crack in my voice… or perhaps even still, she heard the breaking of my heart.
You see, as much as I love him and am concerned with every aspect of his being, my son with special needs was not what was threatening to consume me that afternoon. We had just learned that Matthew’s Daddy, my husband of more than three decades, had, according to doctors, only months to live.
In my sadness, God set into motion a gift, a plan, for our family. The caller innocently asked, “If your husband could do anything, what would it be?” As I sat for a moment pondering that question, I settled on something I knew would bring him more joy than riding a bull for 8 seconds or racing a car around a track at over 100 mph and that would be spending family time together.
Where? Now that would be a bit harder to answer, but I quickly remembered a long weekend we had spent in Virginia Beach years ago, and as I closed my eyes, I could once again picture the time on the beach… with not a care in the world, walking, chasing waves and collecting seashells. I could hear the laughter of Don mixed with the delightful squeals of our then, only son, and I knew… that’s what he’d want… another magical time at the beach.
That call, set in motion events that quickly came together as people we’d never met or most likely, would never have come into contact with, shared my husband’s story. Those people then shared and on and on, until finally, Kim Sproles, with the Healing Hearts Respite Foundation heard his story.
Over the next weeks and months, a plan came together and finally in April we received clearance from Don’s Oncologist and medical team for him to take a few weeks off from treatment. According to his Doctor, this was just what the doctor would order.
The weeks prior had been brutal on Don physically, but even more so emotionally, as he struggled to keep fighting. Not wanting to give up, yet fearing, he may not have the strength to continue, this time of respite would do more for him than relieve the physical exhaustion. It would provide, quite simply a time to rest. A week to shut out the world with the treatments, surgeries, drugs, and appointments that filled our daily calendar.
As they removed his pic line and readied him with medication for our adventure ahead, I couldn’t help but wonder, what the time off would mean to cancer that was rapidly spreading?
Holding tightly to our belief, that no matter what lay ahead, God was in control. I was sure, no one other than Him, in His grace and mercy could have orchestrated the avenues that had lead us to this very moment.
Days later we flew into Virginia Beach; but our vacation would take us further south, down the coast, to Corolla, North Carolina, where a yellow house beaconed us home.
As we climbed the steps to the front door, our hearts, weary, worn, battered and bruised from the fight against the ravages of cancer and it’s treatments; we dared to take a little deeper breath, then another.
Over the next several minutes we quickly set our things inside and then did what anyone that is from land – locked areas would do… we set out to find the nearest route to the beach!
Thankfully, we quickly had our toes in the sand and the salt water breeze blowing across our faces. With each incoming wave, our bottled – up tension seemed to be carried, further and further, out to sea.
Minute by minute, we dared to keep our eyes open and take in every single moment of God’s goodness. As Don and I walked down the beach, we reached out for the other’s hand and sent up a prayer that God would use this week as a time of healing, not only physically, but spiritually and emotionally for our family. Oh, my… we got so much more than we could imagine.
Hour by hour, sometimes, even minute by minute something new unfolded and just below the surface was a new and wonderful gift, in the form of an embrace, laughter, even the wiping of a tear.
We met, as we call them, the “fabulous four” early into our trip… Kim, Hope, Melissa, and Katie, from Healing Hearts Respite Foundation. Each one on assignment, I’m certain, directly from God to speak into our lives individually and collectively as a family.
There’s no better way to get to know someone than to break bread with them, just imagine, if it’s an entire shrimp boil FEAST! As the food was heaped onto our plates, God’s love was poured out over our gathering. Before the night was over, our families formed a forever bond with these four incredible women.
The days that followed included many surprises. One, a wedding that, as little girls, we often only dare to dream. This time, it was no dream, it was instead a picture perfect vow renewal on the beach in the beautiful Outer Banks. Me, the not-so-young, bride wearing a custom – designed wedding gown, standing under an arbor of driftwood and cascading flowers, exchanging vows with the love of my life, promising that we still do… forever and always.
Healing Hearts Respite Foundation afforded us the opportunity to believe again, to hope again, to live again. We’ve learned through this journey, and the many previous medical issues with Don and Matthew, that life truly is fragile. Every day is a gift. Not always wrapped up in North Carolina sunshine… but always brighter when shared with those you love.
Each day, each hour, God used a mixture of rousing games of corn hole, North Carolina Barbeque, wild horses, pizza, seafood, salt, sand, airplane rides at Kitty Hawk, lighthouses, shopping, flying kites and the making of new friends, to begin a healing for our family.
We came home with an array, of souvenirs, but the one thing that each of us chose among our various t-shirts, sweatshirts, and key rings… was something with the saying, salt water heals everything.
That it does… when you mix it with a yellow house, sand, laughter, caring hearts and God’s love.
The Shannon Family
Graeme is 3 years old and was diagnosed with Acute Lymphoblastic Leukemia. The awesome Shannon family spent Thanksgiving 2016 at the Respite House. The family enjoyed Thanksgiving dinner provided by Tommy’s Market and a chilly ride on the Wild Horse Tour. Kelly and Ross also got to enjoy a date night at the Blue Point restaurant.
The Mack Family
The wonderful Mack family made their first ever trip to the Outerbanks in July 2016. Asher Mack a vibrant 4 year old boy with Down Syndrome was adopted by the Justin and Lindsay Mack from Armenia. Asher was diagnosed with Leukemia during the adoption process. Asher is an energetic and full of life little boy. The Mack family had a wonderful week of respite and family time and enjoyed the Wild Horse Tours and photos on the beach.
The Alvarez Family
Harold who also goes by “H” is an awesome 14yr old teen who was diagnosed with Osteosarcoma (a form of bone cancer). Harold and his family traveled from Connecticut in August 2016 for a once in a life time road trip. They had never taken a road trip this far before and had never visited the Outerbanks, they were all in! They had a wonderful week of memories and respite. They enjoyed the Wild Horse Tours, a fishing trip and beach photos.
The Powell Family
The Powell family spent a week at our Respite House this summer June 2016. Kelly and Carson Powell were in a near fatal car crash last year. Kelly was in a coma for 2 months and Carson who has Cerebral Palsy had a badly broken leg. Kelly continues to make improvements but she still has many limitations. Carson is doing well and is a wonderful bright teen. Older brother Clayton and dad Greg have had their hands full taking care of Kelly and Carson.
The Selig/Adams Family
This is handsome Grady. Grady entered this world as a very tiny preemie weighing 1 pound 14 ounces! A Micro Preemie as he was called. Grady had many challenges, he had a trach implanted and was in the hospital for months. During those months the family had to be trained at the hospital to prepare to take care of their boy when he returned home. Grady no longer has a trach and is a thriving 3 year old. The family had endured many struggles over the past few years and a time of respite is just what they needed.
“It was great to see Grady play like a little boy should. Thank you from the bottom of our hearts”
The Green Family
“This is our life and while it’s incredibly hard, it is beautiful. We all have broken pieces and daily struggles that can sometimes overwhelm us to the point of wanting to give up – but we are perfectly imperfect and so, so incredibly blessed.
Last weekend our family was able to get away for a long weekend to an absolutely beautiful respite house in Corolla, NC. This would be our first trip to the Healing Hearts Respite, we were so very much looking forward to this trip and had big plans to make the most of every moment! The house is just beautiful and I fell in love with the Christian focused messages and artwork in each room of the home… such encouragement and hope surrounded us.
The first day was wonderful, we went to the beach in the morning and Alex got to take his tank in the sand for the first time. Watching him drive where HE wanted to go was awesome as usually Derek or I would take turns pushing the very large and kind of awkward to maneuver beach wheelchairs. He was having so much fun with this new found beach independence and “off-roading” – I felt a little bad having to tell him to keep him off the dunes as that was the first place he headed of course! We played frisbee golf with the boys and Caitlyn entertained herself by adding sand to buckets and dumping them out. It was as close to perfect as you could get.
Alex and I took a long awaited walk on the beach (with the tank) and collected shells for a keepsake vase that Healing Hearts had given to us for our stay. We collected ‘broken shells’ and talked about a book I had read to the boys the night before, a book in the respite house called, “My Beautiful Broken Shell”. We talked about the ocean, about how it looks like it goes on forever, about Christopher Columbus, and about God. It was again, as close to perfect as you can imagine. Another moment I hope to burn into my memory forever.
The wind started to pick up, Alex was getting chilled so we headed back to where we had set up for the morning, packed up and headed back to the house.
That evening we had a photo shoot scheduled with a girl who Kim at Healing Hearts works with – Ginger at Ginger Snaps Photography – and it was something I was really looking forward to. I’ve always wanted to do a beach family photo shoot and having these pictures of our family of 5 together now seemed to be perfect. I started getting big plans for canvases for our living room with pics from this shoot – hoping they would turn out well. I imagined this picture perfect photo shoot: our kids laughing and playing on the beach while Derek and I held hands…you know, the perfect family right? All of us matching and looking…well, you know – perfect.
So an hour before we need to be at the beach to meet Ginger, Jacob tells me that he can’t find his picture outfit. Yes we have ‘picture outfits’ – you know the one time Mom’s get somewhat of a say as to what everyone wears. So Jacob left his at home and all he has are swimsuit trunks and sports tanks…not really aligning with my perfect daydream of this shoot. Sooo, we improvise and decide to leave a little early so we can go hit the beach shops in search of something for Jacob that somewhat matches everyone else.
Derek drops Jacob and I off so we can shop while he drives Caitlyn and Alex around in the van. Ohhh – did I mention Caitlyn decided it would be the perfect day to NOT take a nap??? So his job was to drive her around so she could sleep and my job was to as quickly as I could bring Jacob in and out of the shops in search of something that would work. We did some record shopping actually – we hit 10 stores in about 15 minutes. We ended up with a cute but way overpriced billabong hooded shirt and drove back home to pick up Alex’s black adidas pants that Jacob could wear – I figured those would work better than the plaid teal swimsuit trunks I saw and since he strongly protested the pants I found that would match but just happened to be girls’ pants, we went with Alex’s black Adidas pants. Jacob and I hopped back in the van and Caitlyn, who hadn’t slept a wink, was starting to get super unhappy with being in the van.
We met up with Ginger at the beach and immediately I could tell she was super sweet, energetic and bubbly, and just incredibly kind. I felt at ease and excited again about the photo shoot.
We got everyone dressed – who still needed to be dressed – and headed to the beach. Caitlyn loved the beach earlier that day so I figured she’d have fun again despite the lack of sleep.
Ginger had a game plan all ready to go to help the kids warm up to her…Caitlyn however had other plans and decided she did not want to be anywhere other than my arms. She didn’t want to play in the sand, nor the cute boat Ginger brought, nor with the conch shell or anything else we were trying to coax her with. She didn’t want to take pictures with Alex or Jacob, she wanted her shoes ON, then almost immediately she wanted her shoes OFF…it was going to be that kind of evening. Ginger continued to shoot the boys first and we were hopeful Caitlyn would calm down if she had some time. Very quickly my perfect daydream of our hand holding hand family was slipping away and I had NO idea what kind of pictures we would end up with.
I became a little stressed and while the boys for the most part did great and Ginger was SO patient with all of us, in my head it seemed as though we weren’t getting any pictures where someone wasn’t upset. I gave Caitlyn my phone in an attempt to snag a few pics of Derek and I together and low and behold – Elmo on YouTube never fails! After a few more pics, Alex started to get tired and we decided we had gotten all the pictures we could.
I felt the need to apologize to Ginger for our ‘crazy’ family and while she sweetly assured me it was great – I felt in my head that it was anything but that and surely she was just being nice. So that was my take on our photo shoot day.
Then, I see Ginger’s post about the photo shoot for our family and the pictures…oh my goodness…the pictures.
In awe I scroll down slowly through each of the pictures and am amazed at the beautiful faces I see looking back at me. THIS is my perfectly imperfect family. THIS is the family that God has blessed me with, I am overwhelmed at His answer to my prayers to have a family – I never knew what I’d wanted to be when I grew up – but the one thing I did want was a family and children. Yes, we can be crazy. Yes, we are broken. And Yes, we are far – oh so far from perfect – but together, all of us, we ARE perfect! Each of us fits perfectly into our family puzzle, each of us has our strengths and weaknesses, each of us has our purpose, and those strengths/weaknesses fit perfectly together to make us who we are. God has promised that as His children we will have eternal life in Heaven, He has made us perfect through His son, our savior Jesus Christ.
No matter what this life brings, no matter what we are asked to go through, THIS is my perfectly imperfect family who God has given to me for eternity – this is my family forever and ever and NOTHING, not even cancer can take that away from me. For all of these reasons and so much more, we are truly blessed.”