I was running. The sun had just risen, and light was coming through the palm trees like a bit of heaven on earth.

But as I turned that corner where the invisible boundary between Santa Monica and Venice Beach becomes oh so clear, a homeless woman stumbled in front of me on the path. Her face was beautiful and she was blonde, she was even dressed up but her feet were bare and she was talking to herself. The floodgates of healing opened wide as Plumb’s “Need You Now” played loudly on my iPod.

I had to stop, catch my breath, let the tears stream quietly. For nine years ago, dear sister was lost and in trouble on these streets of Venice Beach. We got on a plane and spent days here, hoping and praying, walking and running, following and chasing, desperately trying to entice sister back home and save her from destruction. But our efforts failed, and it was six years of trauma and drama before there were any signs of hope.

For me, the wounds from Venice Beach and the six years that followed had healed as best as they could this side of heaven. That’s what I thought.

But God alone provides the right time for real healing to begin.

Two hours ten minutes of running the first day, and one hour thirty minutes the next, that’s the time I spent on the path to, through, and out of Venice Beach over a week ago.

I could have stayed comfortable in the hotel workout room, but my soul needed healing. My soul needed to see, to experience the sights and sounds of Venice Beach again, this time in a new light.

So after crossing paths with that stumbling homeless lady, I decided I would face the pain straight on. Rather than run on the outskirts of Venice Beach on the winding path, I’d run straight through. I’d stare down the store fronts forever etched in my mind, I’d look right into the eyes of the homeless residents, I’d let every image seep in and every old memory leak out as it may.

The further I ran, the more I was healed, and by the time I got back to the room I was physically exhausted, but filled with peace I would have never known had I remained safe in the hotel.

And through the healing came another message quiet, but clear  – we’re all homeless without a Savior.

As I ran, I saw glimpses of all humanity in the homeless.

Hollowed out, dried up.

Shuffling around, wandering aimlessly.

Playing it cool, putting on a happy face.

Wasted. Used up.

Seeking, hiding.

Sleeping the day away, riding the wave.

Bent over, worn out.

Abandoned. Alone.

Desperate.

Whether we’re homeless on the streets, or homeless because we have no idea where we’re going, what we’re doing, or where our real home is, we’ve all faced emptiness, uncertainty and desperation in our lives to some degree.

Perhaps all of life makes more sense in light of Easter. A God bigger and more powerful than we can even begin to imagine sent his son, Jesus, to dwell on earth as man. Perfect in every way, He lived in a land that was not his home. He experienced and therefore understands all of human life, the good and the bad. And though it’s hard to believe or even fathom since we didn’t see it happen, He died and rose to offer us redemption and perfect life in eternity. And while we’re here on earth, He heals, He directs, He guides, He offers peace and clarity, and He creates something beautiful with our lives and days – if we’re willing to listen, if we’re willing to believe, if we’re willing to follow.

It’s a gift, and we have free will to accept that gift or not. For me personally? When I find myself in the midst of complete confusion, chaos, and dissatisfaction, I remember this reality, and it’s the only thing that makes sense.

“If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.”  C.S. Lewis

 

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”  Revelation 21:4-5

Amy

Mara. Sweet Mara.

I’d heard her name many times more than once. I took note this little girl was in need. Prayers were lifted from the pulpit and there were requests for even more prayer. Her name showed up in email newsletters, and there was a benefit too. For years, these opportunities to cross paths with Mara sat at my doorstep.

But friends, I have to be honest, my eyes were not wide open to little Mara’s reality until three days ago.

For in my own pain, I could not see. Our stories had overlapped on the timeline, and I was not able to open my heart to a set of circumstances remotely similar to what I was enduring, what I had endured. In those unknown years of overlap, my own heart had been broken and was spilling out wide from six years of trauma and chaos and pain from my own sister’s illnesses. Illnesses much different than those Mara faces, but in light of God’s bigger-picture story, similar enough.

So it was not until now, just three days ago, that my heart was ready to hear who Mara really was, who Mara really is. To hear Mara’s story, to open my heart and let a flow of compassion spill out for her, is necessary now.

The story of a daughter, a sister facing a battle, facing pain that has lasted for years. A roller-coaster story of ups and downs. And let me tell you, Miss Mara has endured some big rides. From her Caring Bridge site:

Mara was diagnosed with a rare genetic disease called MPS VI in 2006. After several years of complicated ERT (treatment to help slow the progression of her disease) failed to work for her, she underwent her first BMT in 2008 in which lead to engraftment failure. After a few years later of trial and error therapy, and lengthy ICU hospitalizations the decisions was made to undergo a 2nd bone marrow transplant at the U of MN. She is currently undergoing chemotherapy to prepare her bone marrow to receive her “new cells” on Feb. 7th 2013.

A moving video of Mara’s second bone marrow transplant on February 7, 2013, can be viewed here: http://mollyshieldsphotography.myshowit.com/maranorton

Today marks Day +27 since Mara’s second bone marrow transplant, and the best news yet came yesterday when Mara’s mom shared that “Mara is 100% grafted with donor cells!”

But friends, while this is the best news ever, this daughter, this sister, little Mara, is not out of the woods yet. For she is still in the hospital, and there is belly pain and nausea, chills and blood pressure to control. Her “adenovirus blood test from Monday came back 5x higher, and her CMV doubled again,” she is on antiviral IV medications in hopes they “will start kicking in soon, the IVIG infusions help her IGG go up to help fight, and her T cells start growing to help too.”

All the abbreviations make my head spin, and families shouldn’t have to know what BMT and CMV and IVIG and IGG mean. But Mara’s health? That’s what’s important. For the God of the Universe designed the inner-workings of all those abbreviations and all of those numbers and readings, and we can rest in confidence knowing He has Mara in His hands. For Mara is God’s story. He sent His son for us, in our suffering and in our pain, in our chronic diseased state, and He redeems, He heals, He restores. And Mara is in His hands.

But even in that glorious truth, we must not forget. Mara is not alone.

Daddy Christian and Mama Tina, Older Sister Catherine and Younger Brother Landin? These are the people that have been by Mara’s side. Her family. Mara, a sweet child of tender age, reliant on her family for care, for stability. I’ve never met Mara, nor have I met Daddy or Mama or Older Sister or Younger Brother, but let me tell you, they’re brilliant, they’re brave, they’re bold and courageous and they’ve fought a battle that’s been hard won. People can’t really grasp the breadth, the depth of little Mara’s health issues, the struggles she faces, the struggles they’ve faced, but the pit in Daddy Christian’s stomach has turned to a ray of sunshine in a matter of minutes more than once. Mama Tina has seen “glimmers of better,” and Older Sister and Younger Brother’s lives have been changed. forever.

The fact is, none of us would understand unless we stepped right into Daddy Christian and Mama Tina and Older Sister Catherine and Younger Brother Landin’s shoes. And since we can’t step into their shoes, we must, we must. also pray for Daddy Christian and Mama Tina and Older Sister Catherine and Younger Brother Landin. For these special beings have been placed in Mara’s life to care and support, to love and to nurture, and they need our assurance, His assurance, as well. For the days are hard and the road is long, but all five must know we care.

So today, thanks to Ms. Liz and Pastor Dan, and God who opened my heart at the perfect time, I fast and pray with hundreds others, in honor of Little Miss Mara and her dear Daddy Christian, Mama Tina, Older Sister Catherine, and Younger Brother Landin.

May they be healed, may they be restored. May these days seem short in light of life ahead.

Will you join us? It’s never too late. For we’re all on God’s timeline, and though we may be momentarily blinded to others’ pain because of our own, God is always ready to open our hearts at a moment’s notice, so we may lift others to His glory.

“Now, therefore,” says the Lord, “turn to Me with all your heart, with fasting, with weeping, and with mourning.”  Joel 2.12

Amy

Mara’s Caring Bridge site can be viewed and followed at: http://www.caringbridge.org/visit/norton. The family is grateful for prayer partners along the way.

Today I am honored to share with you a guest post written by a friend from my childhood, Jason Erickson. Jason’s dad sustained a significant traumatic brain injury two years ago. Since the injury, I have been following Jason’s posts on CaringBridge, and have been continually moved by their family’s faithfulness and love for one another in the midst of such life changing trials. Before I launched the blog, I asked Jason if he would be willing to guest post about his dad. Although I originally intended him to guest post months ago, Valentine’s Day seems a perfect fit.

In this post, Jason shares the heart-warming and inspiring story about his parents – their love for one another, their love for their family, their love of an Almighty God, and the promises that remain true even in the face of a significant traumatic brain injury.  Jason so beautifully reminds us that we should not “take even one day for granted with those we love and cherish most.” 

Her words and the panicked sound of my mom’s voice will forever be etched into my mind. “Jason, come quickly, your dad is hurt really bad.” These were the words that introduced me to a life-changing chapter in the life of our family. As the helicopter made its way to the parking lot of our family-owned lumberyard to airlift my dad away, I was beginning to wonder if my life had changed forever, in the blink of an eye. What I would later find out on January 12, 2011, is that my dad had sustained a traumatic brain injury from a fall while working on an overhead garage door at our business. His initial prognosis was very dim, but now, over two years later, our family has grown closer and I have witnessed first hand the covenant my parents made to each other and before God.

The story of their marriage began on a typical fall day, for most of the world it would prove to be a very ordinary day. For a young couple, this day though, would mark their beginning. The beginning of a life together, one that would have many more ups than downs, many more smiles than frowns, and one unshakable foundation. On that fall day, October 24, 1970, I was not even a twinkle in my parents’ eyes, and little did I know how much of an impact that day in history would eventually have upon my life.

When I arrived on August 12, 1974, I was completely unaware of what had just occurred. Unaware of whose gentle hands tenderly held me, unaware whose loving eyes stared into mine, and unaware of whose hand caressed my head while whispering in my ear, “I love you.” Over the next few years, my love for these two people would grow exponentially. Initially, not even knowing who they were, to being the ones I looked to for love, support and strength.

My parents would provide all I would need growing up, including a foundation of faith. I remember growing up how important it was to show and tell how much we loved each other. I remember feeling my “love tank” fill up as my dad wrapped his arms around me to give me hug. I remember the special moments Jill, Mom, and I shared on the deck eating lunches during the warm days of summer. As I grew older, I began to admire more the relationship my parents had. Throughout my dating years, I recognized their marriage as one I would like to model my own after. Granted they were human, and their marriage was not perfect, but considering all life tends to throw at us, it was a very healthy relationship.

Growing up in our home, it was always comforting to hear my parents say that they loved each other. The love they shared was more than just words, it was nurtured and followed up by actions. Actions, not in the sense of expensive gifts, but in simple gestures of kindness – my dad scrubbing the kitchen floor at night even after a day of logging in the woods, my mom leaving supper for us when she had to work evenings at the hospital, and the fun-loving sight of seeing my dad steal a kiss from my mom as they walked into a restaurant. To some this may seem irrelevant in the greater scheme of life, but to a son and daughter, it helped provide the security needed in order to form the foundation of who we are today. Our home was a home in which two children knew beyond a shadow of a doubt that their parents loved each other, loved being together, and would stay that way until one day God would call one of them home.

Our family had the blessing of being a pretty normal family, even as Jill and I grew older and had families of our own. We all lived relatively close, so we could spend time together. Jill and I had all of our grandparents still living and we were all generally quite healthy, so life was very good.

The “normalcy” of life abruptly changed on that brisk winter January day in 2011. Initially, after the surgery to stop the bleeding on his brain, I didn’t know if my dad would live through the night, and even if he did, our family would have a new “normal.”

Since that difficult day in early 2011, my mom has not missed one day, or may I say, one opportunity to be with my dad. She has been with him, by his side each day, encouraging him, spending time with him, and making the most of what time they share together. Granted, it is not what she would have chosen for this stage of their life or their marriage. But on that fall day in 1970, her covenant before God and with my dad did not have an exit clause. As they stood in that small town Minnesota church, their promise to each other was not only for the good times, the safe times, or the easy times. It was a promise made for life, and included the words for better or worse, in sickness and in health. I’m sure they never would have envisioned this present day scenario, but then in reality, on one’s wedding day, who does envision such a tragedy?

While growing up, I admired my parents and their love for each other. Since my dad’s accident though, I still not only admire their love and devotion, but I now cherish it. I have witnessed, specifically on the part of my mom, her love for my dad lived out on a daily basis. A love that at this point, is not reciprocated in a way that she would choose, but nonetheless not prohibiting her from continuing to share it with dad. Considering the fact that my dad is still in a transitional care unit, I don’t necessarily know what my dad ponders as he is in his hospital room. We are hoping to eventually move him to a rehabilitation center, but for now he is still bed ridden and on a feeding tube. One thing I know he is not concerned with however, is the dedication and devotion of my mother. Each morning, whether sunny or snowy, when he opens his eyes he sees his bride, and each night as he closes them, he has the assurance that she’ll be there tomorrow. As a wife, she understands her need to make time for herself in order to remain healthy and “charged,” but there is always time and a place in her heart for dad.

My parents’ love for each other during this difficult time did not just happen. It is a love cultivated by many years of loving on each other. Years of loving acts that continued to bring them closer to each other, and in that, formed a bond that nothing in this world can break. As much as my parents love each other, and thus demonstrate that love for each other, that is only part of their story. On that day in October 1974, the covenant that my parents made with each other, at the same time, they also made with Christ. They promised themselves to each other, and their marriage to Him.

In a world that is not always conducive to keeping one’s marriage a priority, He was and is the rock that my parents have built their life on. I recently heard someone say, “sometimes God allows you to hit rock bottom, in order for you to find out, He is that rock.” That fact somewhat summarizes the past couple years of my parents’ marriage. This life is not always going to be easy, and there will be times we may wonder “why?” My dad used to remind me that in this life we were never promised it would be a rose garden. It is in the midst of these difficult times though, that we hold to our faith in Him, and His plan, even though we sometimes have many more questions than answers. It is this simple act of trust that brings us peace, knowing that His plan will ultimately work out for good, if we continue to put our faith in Him. Work out for good, not necessarily on this side of eternity, but we will one day understand “why” it had to occur.

One day my parents will say good-bye to each other on this earth. One day they will hold hands one final time. When that day arrives, they will let go of each other, knowing that this though, is not the end of their story. For there is coming a day when they will be reunited again and their tears will be wiped away, never to return. A day when the Rock they built their life on here, will welcome them home for eternity. It will be on that day, that their story, will simply become a smaller part of His-story.

As Valentine’s Day is upon us again, may we each remember our closest loved ones. May we not take even one day for granted with those we love and cherish most. As we celebrate the day that celebrates love, I am reminded of a few verses.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. And now these three remain: faith, hope, and love. But the greatest of these…is love.  1 Corinthians 13

Jason Erickson

It is my pleasure to introduce you to my friend and former colleague, Nicole. I met Nicole in 2005 when she joined our early intervention team; I served as a speech-language pathologist and Nicole an occupational therapist. I felt a very natural and special connection with Nicole from the moment we met; she has such a sweet and kind soul. Today I am beyond honored to be able to share with you my very first guest post, written by dear Nicole about her precious infant son, Benjamin, who passed away in June 2011 from spinal muscular atrophy (SMA), a neuromuscular disease that is the leading genetic killer of children under two. Through Ben’s story, Nicole so beautifully reminds us that “though God can not stop all hard things, He can foresee all and interweave everything into His Divine plan to make good come of the hard stuff.”  

On September 30, 2010, my husband, Mike, and I were blessed with the birth of our fourth child, a big baby (8 lb 14 oz and 22” long) with red hair, our precious son Benjamin Michael. What an amazing moment! We had waited to find out the gender as we had with our three older girls, loving that wonderful surprise at birth, and we sure were surprised to see a big beautiful boy!

Our early days with Baby Ben were busy of course with four little ones. At the time the girls were six, almost four, and 21-months. Ben joined along in rides to school, was an audience member at dance and school programs, and observed all the antics of his sisters. A little before two months, we noticed that Ben had low muscle tone. He was not lifting his head when lying on his tummy and in fact had done better with this in the first few weeks of his life. I consulted my friend and co-worker who is a physical therapist and she provided some activities which we incorporated many times per day. At three months, I realized that Ben’s tone issues were not improving and seemed more concerning. I called to make two neurology appointments, to rule out any “scary stuff.” I called our local early intervention team to schedule an evaluation for him. I felt so strange making those phone calls, desperate for answers. I thought he might have extremely low tone (hypotonia) or cerebral palsy. I tried to prepare Mike that I thought there would be lots of therapies ahead, that he may not walk until at least 18 months. I talked with co-workers, saying I just hoped it was nothing regressive. The wait for the neurology appointments to come ticked on, and meanwhile Ben had a cold which never seemed to go away. He had noisy breathing. He had more leakage from the corners of his mouth when feeding. He also seemed to use his tummy a lot for breathing. All of these things we attributed to the low muscle tone. Our worry built as he approached four months.

A few days after he turned four months old, on Wednesday, February 2, 2011, the day began as normal. In the afternoon, Ben suddenly refused to take his bottle and was breathing with more effort then usual. We had been suspecting reflux and I heard gulps like he was refluxing. I thought I would call the doctor in the morning and talk about medicine. Mike tried to take him for a drive to calm him to sleep as we assumed the reflux was bothering him and that maybe he was getting the respiratory virus the girls had dealt with the week before. When they got back from the drive Ben had never fallen asleep and in that time he had developed a fever of 102. Mike took him to the emergency room at Children’s St. Paul while I stayed home with the girls. His breathing got more out of control and they had to put him on a ventilator. Mike called and told me about the ventilator and that the doctors were thinking there was some underlying condition going on. That is when the terror struck. As Mike’s dad stayed with the girls, Mike’s mom drove me to the hospital in the wee hours of Thursday morning, February 3. I saw my baby lying sedated on the bed, the ventilator breathing for him, so helpless. In desperation and fear, I asked the doctor, “Is there any way this is just low muscle tone?” She slowly said that she worried about a disease called spinal muscular atrophy (SMA).

The doctor asked me if I had ever heard of spinal muscular atrophy. I had never heard of it in my whole life, not in college studying to be an occupational therapist, not in years of working with kids with special needs, until the morning before at work. The other occupational therapist in birth-3 had mentioned a new child she was going to be working with who had SMA. I now know there is a reason I heard the word SMA that morning. As I heard it again with my baby lying on that hospital bed, I knew this was a devastating diagnosis. Those hours through the night were the hardest maybe of this whole story. Not knowing for sure,  dealing with the new realization that our baby may not live.

At 9 am that Thursday morning the neurologist came and confirmed that she believed him to have SMA, Type I. The geneticist visited on Friday and came to the same conclusion. SMA is a neuromuscular disease and is the leading genetic killer of children under two. It occurs in 1 out of 6,000 births. It typically occurs when both parents are carriers. 1 in 40 people are a carrier of SMA. When both parents are carriers, each baby they have has a 25% chance of having SMA. Generally the same type of SMA runs in a given family. SMA has 4 types; type I, which makes up 70% of SMA diagnoses, previously known as Werdnig-Hoffman disease, begins in infancy and typically infants with type 1 are not able to roll over, sit, or even hold up their heads. Ben had all the signs, and it was confirmed the next week when the blood test results came back. Ben was fighting pneumonia brought on by the parainfluenza (croup) virus. Babies with SMA are very susceptible to pneumonia. Despite our grief, we grasped onto the gift we hoped we were about to be given, more good time with our baby Ben.

Most of the doctors in the pediatric ICU thought he had a good chance of coming off the ventilator, beating the pneumonia, and going home for some more good days. The nurses in the PICU were my confidantes. They listened for hours as we kept watch over sweet Ben. The chaplain found me almost every day it seemed, talked with me, prayed with me. I asked her what it would be like when Ben went to Heaven. She described it as being a holy time, special, sacred. I began to think of it as being like a birth, something bigger than myself, something I could never do alone but God would be with me. Those days by Ben’s bedside were special to me because they were time I had with him, to hold his little hand, to sing to him, to pray and pray and pray for him.

The child life specialist was such a comfort to me. She helped give us the words for how to explain the disease to the girls, and for how to later explain the shortness of the life Ben would have. A friend connected with the national support group, Families of SMA, and found a mom whose daughter was born with SMA Type 1 and went to Heaven in 2006. She visited me at the hospital; I was so grateful for being able to talk to someone who really knew what I was going through and who had somehow managed to go on. My sister and friend planned a benefit which relieved financial worries. So many people sprung into action to help us with prayers, food, help with the girls, funds. We felt so blessed by everyone’s generosity.

Ben did come home after several weeks of getting better from the pneumonia and having surgery to place a feeding tube in his stomach. Ben had lost some skills in the three weeks he had been dealing with the pneumonia and hospitalization, and with the progression of the disease. He did not move his legs anymore, only his feet. He moved his arms from the elbows but could not use shoulder movement. Unfortunately SMA was one of those regressive diseases I had worried about. Ben came home with medical equipment (feeding pump, pulse oximeter to monitor his oxygen saturation and heart rate, nebulizer for respiratory treatments, vibrating percussor wand and cough assist machine to get mucus out of the lungs, suction machine as he had lost his ability to swallow saliva, and bipap mask which he tolerated during sleep to help with breathing). We had home nursing during the day and they, like the nurses in the PICU, were such blessings to us and to Ben, who loved them and shared many of his precious smiles with them. We had visits from the palliative care team from Children’s, including a nurse, social worker, child life specialist, chaplain, and music therapist. This team ensured comfort for Ben and for our whole family. In May, the palliative care team arranged for me, through the parent to parent program of Children’s, to meet another mom who had a baby with SMA Type 1 in 2003. She visited us, bringing food and gifts, but most importantly understanding.

We were so overjoyed to have the gift of more time with Ben, and he had so many good times! He smiled all the time and would do a silent laugh/chuckle when tickled, during peek-a-boo, or when his sister Ellie would throw his treasured balloons up in the air! He only cried when he was tired. He loved music therapy, especially the guitar. Ben loved to mouth light-weight toys that we placed in his hands, bat at Weebles toys, and knock down block towers with his little fist. He loved books and would pay attention to them for so long. He loved when Mike would take hold of his arm and pretend that Ben was punching him. He loved to play with my hair. He loved to watch the trees blow outside the living room window as he lay on his comfy pillow playing. We took many pictures and videos which are such treasures to us.

We decided that we would keep Ben at home and out of the hospital. We wanted his last days to be peaceful and at home. We chose not to do a tracheostomy tube with ventilator because we knew that given the progression of the disease for Ben, SMA would quickly take all of Ben’s movement away and we did not want him to have to stay here, stuck in a body that could not move though his mind would be unaffected. As a parent, you will do anything for your child even if it is very, very hard for you. We were willing to be without Ben physically here so that he could be free.

Ben had several respiratory infections in the spring but made it through with just increasing his respiratory treatments and antibiotics. Due to some horribly scary episodes of him turning blue and unresponsive when semi-upright in the swing or being held, he had to use a sidelying position mostly and we carried him in a Moses basket to keep his position very stable.

On June 6, 2011, Ben developed a fever and very high heart rate, with his little tummy working so very hard to breathe. We thought he might be going to Heaven and we lay next to him snuggling, praying, crying softly. That night we started giving him medicines for pain and they worked to make him comfortable. Ben did not pass that night, and slowly improved somewhat throughout that next week. After that night, Ben’s work of breathing was more than before and every few days his heart rate would get high again and he would need a dose of medicine to make it go down. He returned to playing and smiling away, our sweet happy boy.

On June 22, Ben’s heart rate became very high again and his work of breathing was so much. That night his pulse oximeter alarm went off and from then on he needed oxygen and constant medicines for pain with increases in doses. It seemed that Ben’s body just could not go on working so hard anymore. In his last days on earth, Ben slept a lot and when awake he would mostly look upward, above our faces. We feel he was seeing angels and beginning to cross over to the next world.

On June 28, 2011, at 8:45 pm with the sunset, our beautiful Benjamin went to Heaven. I was once again able to hold him in my arms as we told him we loved him, it was okay, and to go to Heaven. We felt such relief for him, to not have to work so hard to breathe and to be able to move effortlessly. It was so peaceful and we had such a distinct sense that he was no longer physically in his body.  His long, fragile body which could not sustain him, which we so loved, was now just the shell from which he had moved on.

Since our Benjamin went to Heaven, we have found comfort in reflecting on his beautiful life. A lot of life can be lived in a short time. We may never on this earth know the power of this one precious life which God saw fit to bless us with. We find comfort in feeling him with us though not physically, in knowing that he sends us strength. After Ben was diagnosed, we read Walter Dudley Cavert’s “Dragonfly Story,” about the transformation to eternal life, which can be found online. We also read Heaven is for Real by Todd Burpo, and it was very comforting to us. We found healing in making photo albums with his pictures. We created a garden in his memory using blue flowers like his eyes and the sky, white like the clouds, red like his hair and with a red maple tree. We felt good decorating his spot at the cemetery with a red stone with a picture of his precious face on it, butterfly wind chimes, a little boy angel statue, and an angel light. When visiting the cemetery, the girls blow bubbles up to Heaven, and run to collect petals which have fallen to the ground. On his birthday and on the anniversary of the day he went to Heaven, we had a picnic there and sent up balloons.

We have continued to connect with other families who have lost a child. I have connected with other SMA moms I met when Ben was alive, and both Mike and I recently met with other grieving parents at the national Families of SMA conference which was held in Bloomington this year.

We have found healing in talking with a wonderful grief counselor together. We seek out things that bring us comfort, going out for coffee (me) or golf (Mike) with friends. We go on outings with the girls, knowing that Ben is with us too, and we so often see butterflies or dragonflies right by us, which we think of as signs from Ben of his transformation to eternal life. At Christmas time, I bought butterfly hair accessories for the girls and had stuffed them in my sock drawer. One day I stepped on something in our bedroom, and somehow a blue butterfly hair clip had made its way out of the package and onto the floor! At work during my home visits, I so often see butterflies. One day at each house I went to I saw butterflies, on the dishes of a little girl as we worked on feeding, on a light fixture at another house, on wall art at another.

I now look forward to that blessed day when I am born into eternal life, greeted by my precious Benjamin’s face. Until then he will send me strength and I will make him proud as I continue the rest of my journey here.

I challenge and encourage you…

Do you understand that though God can not stop all hard things, He can foresee all and interweave everything into His Divine plan to make good come of the hard stuff? He walks right along with you through anything. He truly gives new strength, each step of the way.

Do you live your life knowing that this world truly is temporary? I have witnessed it with my own eyes. Heaven is the ultimate goal. There my Ben is now strong and healthy, without struggle, in a beautiful eternal life and we can one day join him.

Do you make each day an expression of love to your children? Do you strive to brighten the day for others, even those you don’t know well? Do you spend your time on what is truly important?

He gives power to those who are tired and worn out; He offers strength to the weak. Even youths will become exhausted, and young men will give up. But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.  Isaiah 40:29-31

Nicole

For more information on Spinal Muscular Atrophy visit: Ben’s Caring Bridge Site and  Families of Spinal Muscular Atrophy.

 

It is my honor to introduce you to Bethchaida, the sweet girl our family recently began sponsoring through Compassion International. Although I have never met this precious child and only know her by one photograph and a few paragraphs in the child sponsorship packet we received just days ago, I can say with confidence that God led me down a straight and narrow, but very long path to Bethchaida.

Child sponsorship has been stirring in my heart since I was a little girl. Flipping through channels on television, stopping at Christian Children’s Fund commercials, listening to the bearded man tell about children who needed sponsors, seeing the need in a little girl’s brown eyes, boys in piles of trash. Told I could spend 70 cents a day on a pack of gum or 70 cents a day on food for a child, spokesperson Sally Struther’s call to action and the face of these children etched forever in my mind.

I was a child. No credit cards. No ability to make a monthly payment. Didn’t even think to engage my parents about this tug on my heart.

Through the years, time and time again, I stopped at sight of the commercials. Continually called, continually moved by the faces. At times, others even slightly annoyed that I wanted to watch the child sponsorship commercials in their entirety, asking me to turn the channel so they could find what it was they wanted to watch. I knew they didn’t understand what I saw in the faces of these children, the faces that touched the deepest parts of my soul. I changed the channel to appease them, but my heart remained with the children.

That dream, that calling, never went away.

Fast forward to adulthood. I had just joined Twitter in August 2010, and almost immediately discovered the gift of Ann Voskamp and her blog, A Holy Experience. In September 2010, Ann was in Guatemala with Compassion International blogging about sponsorship and had met her sponsored child Xiomara. I read Ann’s post How to Make Your Life An Endless Celebration, tears streaming, and my heart for child sponsorship stirred anew. The little girl inside of me, now all grown up into a mother, was still desperately longing to impact the lives of children I had never met. Powerful words from Ann Voskamp’s post that day…

“I’m the stranger who doesn’t pass by but stays with her here, and I take the bread of this moment, give thanks for it, and I give thanks that we can be broken and we can be given and this is how Christ is recognized in the world.” Ann Voskamp

and later in the post…

“On the bus taking me far away from Xiomara, I am no longer a stranger on the road and I see Christ and I am forever beautifully broken and wrecked for the poor and even my life can be given to satisfy emptiness.” Ann Voskamp

Was it by chance that a newbie to Twitter, I found Ann Voskamp among the first? Was it by chance that I felt a deep connection to Ann’s writing and she also happened to be a blogger with Compassion International? I believe not. I believe God brought me to Ann so I could be daily encouraged by her posts, and to bear fruit in my life through child sponsorship I had dreamed of for so many years.

May 10, 2012: I had been following the Compassion Bloggers in Tanzania on Twitter and read The Nester’s blog post Decorating Truths from a 15-Year-Old Tanzanian Boy. She tells of her trip to meet sponsored child Topiwo, boy with his head down in humility, smiling. The picture of The Nester meeting Topiwo was priceless and just as those children from the TV ads in the 1980’s, it will be forever etched in my mind. Psalm 23 painted outside on the entry to his handmade hut home. The Nester, subtitle of her blog “It Doesn’t Have to be Perfect to be Beautiful,” describes Topiwo’s hut as “breathtaking…humble…glorious all at the same time.” My heart was in Tanzania, overflowing with compassion for people I had never met.

Fast forward to July 2012. Ann Voskamp and her son were in Haiti with Compassion International. July 17, 2012, a post from Ann that lingered in my mind for days, The 1 Thing You Really have to Know About Your Family. Ann’s words remind me that “Faith cannot have a non-response.” She shares of 12-year-old Wesley who can’t read. Wesley with Compassion sponsor photograph and letter in hand, Ann posts about this moment…

“Attached is a picture of a couple smiling happy in Central Park. Wesley’s standing barefoot and wordless in front of a windowless shack with a photo of folks hugging happy in Central Park and how can we help where we are born in this world? This soundless howl pounds in my ears.” Ann Voskamp

I think of little ones waiting for sponsors, little ones whose only lifeline is sponsorship. I am moved to sponsor a child. Again. To serve as a source of hope, as partner with Our Creator – what more is there to life than this?

My journey to child sponsorship continued, slowly but surely narrowing in on Haiti.

A die hard fan after two cruises with my husband, I have been looking forward to an upcoming cruise our family will be taking with Royal Caribbean. Months ago when booking, I guided us to an itinerary that included 3/4 destinations to which we had never been, one being Haiti.

As I began thinking through our day ashore, I remembered a family friend who is in the process of adopting two children from an orphanage in Haiti. Following their visits closely on Facebook, I have been very much drawn to their story, the children, that orphanage in Haiti. I had hoped to take a day trip to the orphanage, only to discover upon further research it was on the opposite side of the island, not to be traveled to and from in just eight short hours onshore.

I thought this would be the perfect opportunity to sponsor a child through Compassion International and our family could take a day trip to meet the child – only to discover that our cruise ship would be docking at a private peninsula in Haiti, passengers not allowed to travel beyond a fence because of safety concerns. So close, but so far away.

July 22, 2012. I had come to accept the fact we were not going to be able to visit the orphanage or a sponsored child, but it had been just days since I read Ann Voskamp’s posts about Haiti and I was still having a hard time justifying a carefree day ashore in Haiti. I searched the Royal Caribbean website for shore excursions and got excited about a cultural tour only to discover upon booking that it is not being offered on our sailing. Still searching, I read deeper into the Haiti shore excursion reviews, generally glowing reviews, stating how beautiful the land is, how pristine the beaches, how great it was that Royal Caribbean provides a buffet for passengers on the beach; spattered here and there were heartfelt comments about passengers’ desires to positively impact the people of Haiti beyond the fence. In an effort to make a difference onshore, one passenger brought extra clothes and gave them to people at the market, another shared bananas with a man in the market who gobbled them up in seconds.

How was I going to travel to Haiti knowing there were babies at the orphanage, children I read about on Ann Voskamp’s blog, people in need of so many resources? And me and my family – unloading from the luxurious cruise ship on vacation, sunning on the beach, dining at a buffet. How do these two worlds reconcile? How do I reconcile these two parts of my heart that seem so conflicting? Is the God that created in me a love for cruising, for travel and special time with my family, for meeting people and seeing new places the same God that created in me a desire for child sponsorship, a passion to help people, a longing to make a lasting impact on others’ lives? How, truly God, am I to reconcile these two worlds?

After discussing all of this with my husband, we decided that we would forego all shore excursions in Haiti, and would instead sponsor a child through Compassion International.

I fully expect that my heart could tear in two that day. I fully expect that I will pray for peace that day, to sit on the beach knowing there is such poverty beyond the fence. I fully expect to be drawn to the markets so I can experience just a taste of the rest of Haiti – meet people, look into their eyes, engage them in conversation, admire and purchase the beautiful creations they have fashioned to support their families.

I also fully expect that I will be spending a lot of that day praying for the people of Haiti. And one of the people our family will pray for that day in Haiti and many days and years ahead will be our sponsored child, sweet little Bethchaida. Four-years-old, living with her father and mother, responsible for making beds and cleaning, father and mother sometimes employed as farmers, 4 children in the family, above average performance in preschool, and regularly attends church activities. A sweet face that captured our attention as we scoured the Compassion website for children waiting for sponsorship.

Bethchaida’s photograph was flagged because she had been waiting 182+ days for a sponsor.

Why it took me this long to find Bethchaida I do not know, but I feel confident that God always knew this was the path.

Little Bethchaida, as we begin this journey together, I pray that you are nourished with food, clothed in protection, bathed in love and care, with the things you need not just to survive, but to thrive. I pray that you discover your creator God and His son Jesus, who died so that you could be saved and live with Him for eternity in the beautiful paradise called Heaven, where there will be feasts and singing and days filled with joy and peace. Where we will dance together, hand in hand, you and me and all of your little friends. Sisters in Our Creator, for eternity.

One more thing I am compelled to note…if you look at the photographs and regularly read posts from Compassion Bloggers, you know that even amidst the poverty, there IS joy, there IS peace, there IS beauty, there IS love, there IS hope for things to come. These things cannot be purchased, but are treasures bestowed on us by God.

Do you feel called to sponsor a child? It’s just $38 a month. There are children waiting for a sponsor at Compassion International.

For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:35-40. 

Amy

*A heartfelt thank you to The Nester and www.picturesofpoverty.com for giving me permission to use your photographs.