This marks week two of Divine In The Daily’s 5-week guest post series titled Special Mamas! Every Wednesday in May, we’re honoring real-life mamas who have big hearts and stand bold and courageous in their unique mothering roles.

Last week, Jennifer Camp, blogger at You Are My Girls and mother of three from Northern California, kicked off our series with a guest post titled When Mothers Cry Rescue.

This week, the series continues with a post honoring a very special MAMA OF SEVEN, Tamara! I met Tamara and her lovely family three or four years ago. From the second I met Tamara, I recognized she was a treasure. It’s a rare occasion when a woman enters my life and I know without a doubt she could become a great friend if the circumstances were ripe – Tamara is that woman for me. Although circumstances haven’t been as ripe as I’d like, I’m not letting Tamara out of my sight. Tamara is a delight. She’s sweet, kind, gracious, loving, authentic, beautiful, relaxed, and so relatable.

Tamara is one busy mama with seven children in her care, so a standard guest post was NOT in order for this special mama! I teamed with my favorite photographer Jessica (previously featured in this post) who generously offered the family a complimentary family photo session, and asked Tamara’s husband to guide their older children in a writing exercise on “Why My Mom is Special.” So today, we present Tamara with this special Mother’s Day gift!

Elijah, age 13

Today, Divine In The Daily launches a 5-week guest post series titled Special Mamas! Every Wednesday in May, we’ll honor real-life mamas who have big hearts and stand bold and courageous in their unique mothering roles.

 I’m delighted to kick off the Special Mamas series with a guest post from Jennifer. Jennifer is a sweet woman and one of many “soul sisters” I’ve found in the blogging community. I deeply admire the way she so humbly and gracefully speaks truth with words and videos on her blog. I invited Jennifer to be a part of this series because she has an incredible gift for sharing the depths of her HEART and SOUL for women.

Jennifer, voice finder and wife of a heart-warrior, in Northern California, mothers three children, writes Loop: What You Need to Know, and leads My Girls, a group where women gather to remember the truth of their identity, in God’s eyes. You can also find Jennifer writing at youaremygirls.com and connecting at You are My Girls Community, on Facebook. She would love to have you join her there.

She looks at me with eyes that plead. “Tell me . . . tell me I’m doing okay. I need to hear it, even if I can’t believe it.”

Right now.

She feels like she runs around in circles all day. She chose to stay at home, knowing she should appreciate the choice, the opportunity. She wanted to stay close, love on her children, plunge full on into the privilege of shaping lives.

But it’s hard. And she doubts she has what it takes to do it well.

She fills out pages of applications for her son’s middle school. Her child’s potential success just ahead.  Just ahead is beginning. Just ahead is opportunity. Just ahead is fulfillment. Just ahead.

Right now.

She fills the afternoons with activities, play practice and karate, language class and piano, football and dance team. She provides her children with chances to learn—to be challenged, stimulated, curious about the world. Their success is her success. And all the running around and shuttling to and fro and being home for a few minutes before dinner time, to get homework done, is a good, full day.

Right now.

She scoops up her newborn and sways, offering comfort in a weary arm curled ‘round, her baby’s nose nestled in the warmth of white t-shirt. A two-year old sleeps in the next room, one moment flowing into the next into the next. Time stretches on like a relay race ‘round a track, the baton never passed. Seemingly in circles. Seemingly never-ending.

This day. Just this day.

Right now.

She is going on four hours of sleep but one thing she knows. This baby, this beloved, needs a mama’s heart pressed to her own. So she gives and she gives and she is weary.

Tell me, please, that I am doing okay.

Right now.

We are mothers and there is one thing, above all, that we crave: Tell me, tell me . . . it is okay to not be okay. Tell me, tell me . . . it is okay to not be fine. Tell me, tell me . . . it is okay to feel like I don’t have what it takes. Tell me, tell me . . . it is okay if I am unsure and ill equipped and fed up and, sometimes, I feel, more than anything, that I just want to run away.

It is okay.

Because while we chase down what we hope is the very best life for our children, we, at our core, need rescue.

Rescue in the staying by our child, in the night, while tears stream down and the night terrors make him scream.

Rescue in the bending low to listen close, once again, as the girls at school don’t want her included, or the grades just aren’t measuring as high as they should.

Rescue in the feeling depleted and worn down and the uncertainty about how help, in this mothering business, will come.

Yes, let us be weary and weak while confident and strong. Let us be willing to be rescued.

Right now.

We are mothers, and we hold our children close and we let them go. We are mothers, and we pour out love and fear and worry and hopes and everything we are. We are mothers, and we mother with a heart full and perfectly imperfect love when we allow ourselves to be loved, as a beloved, too.

Oh, mothers, let’s lay it down. Let’s lay down our need for control, our desire to be right, our quest to fill up our kids because we, ourselves, need to be filled. Let us be filled first, and let that be what overflows. Let us be filled first so we are strengthened in our weakness, emboldened to stay and rest rather than run. Let us be filled first so that in our being rescued we don’t run, we stay.

There is nothing like the stretching, the fear, the desperation filled with terror of unknowns as we parent. There is nothing like the vulnerability, the stretched-wide open heart, the beating, bleeding mess we become when the responsibility to mother well feels so heavy we feel we will surely break. We can barely manage to live lives of strength, fearlessness, confidence ourselves.

We often still feel like children and now we are entrusted to raise our own. We have hearts broken and healed, beating fast with expectation for what is around the corner. We love our children more than anyone could have ever explained to us is possible.

So we must remember that we have been rescued. And because we have been rescued we have what it takes to be in the right now for the someday. What if we were less focused on the somedays, the what-ifs, the fears and worries of raising our children? Could we then, possibly, slow down? Could we then, possibly love them in this present?

If we have been rescued from the burden of needing to have parenting all figured out, perhaps we are free to enter the right now with our children and love them from our own rescued, free heart?

As mothers, let’s accept the invitation to love in the right now.

Because we are rescued.

Because we are not alone.

Because loving in the right now does not mean rescuing our children, too.

 Jennifer Camp

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

Today it is my pleasure to introduce you to Shannon O’Donnell, a writer I recently connected with online! This week, Shannon launches her book Love’s Memory: The Scotts of Mountain Ridge Book One, which she describes as “a story of one woman’s journey to wholeness.” I’ve had the pleasure of reading Shannon’s book this week. Half way through the book, I realized this work of fiction very closely resembles the real life stories I like to tell on this blog – seeing through God’s eyes, listening to His promptings, inspiring, sharing hope and encouragement, believing our lives can be redeemed at any moment. In Love’s Memory, Valerie finds herself in a set of circumstances less than ideal. Valerie meets an older woman named Bessie who follows God’s promptings and takes Valerie under her wings. Bessie, as Shannon shares, is “a praying warrior…strategically placed in the path of [Valerie], and eventually her husband. Once again, God’s love and power is demonstrated in an undeniable and glorious way.”

Please welcome Shannon O’Donnell as she guest posts about a woman who encouraged her to write. And make sure to check out her website for more information on her book, links to purchase Love’s Memory through Amazon, and an opportunity to receive some amazing gifts! 

One of the most gratifying things to a writer is having a great story to tell. The thrill of penning thoughts, emotions and imagination into a tale, I suspect, is similar to a runner winning a race—that moment when a splash of endorphins hits his nerves, sending the signal surge forward. When writing, I call this experience the “writer’s high.” It’s that moment when everything falls into place, when your fingers can’t type fast enough, when the juices are in full swing and a good story is birthed.

I loved writing my story Love’s Memory: The Scotts of Mountain Ridge Book One. I loved my characters. The Scott family is fictional but their story is not uncommon to many today. Broken hearts, broken dreams, broken relationships are common to all of us. Who hasn’t felt the sting of rejection, of disappointment, of betrayal from ones we love? That’s life…and the lessons we learn through it are what make our life worthwhile or unbearable. The theme of my story is forgiveness. How well we learn to forgive will determine the degree of happiness that we experience in day to day living.

My favorite character in Love’s Memory is Bessie. I think everyone who reads my book either has a Bessie in their life or wishes they did. In fact, the world needs more Bessies. The world, especially the Christian world, lacks mature Godly mentors. I dedicated my book to one such Bessie in my life: Mrs. Mitchell.

I was fourteen years old and still quite a stranger to my new Nebraska home when I met Mrs. Mitchell. I had been an air force brat and lived in six different homes by the time I was thirteen. My father retired and at age thirty-nine moved his family to a small but beautiful town in Northeast Nebraska. My English and history teacher was a lovely woman that I called Mrs. Mitchell. Not only was Mrs. Mitchell an incredible teacher who was able to keep this restless teenager enthralled in her lessons, she was a lover of God.

A revival had broken out in a small Methodist church that year. Mrs. Mitchell was a member of it. I remember her wearing a cross necklace of nails to school during that time. I was intrigued by this ardent display of  faith. I wasn’t a religious person. My family attended church but God was never spoken of at home. But I remember hanging around Mrs. Mitchell’s classroom with other students after school and asking her questions about God. She listened with a smile on her face, and always referred us to the Bible for answers.

It was also at this time, at a parents-teachers conference, that I overheard her tell my parents that I would write books ones day. She then turned to me and nodded, “You will.” I remember the feeling of wonder that filled me at those words. Me? Write a book?

The next year I found myself in a different building. I was in high school now. Mrs. Mitchell was busy with a new group of students down the road in the Middle School. The revival had simmered to a slow burn. Life was status quo, you might say.  But seeds had been planted in me and over the years, other Bessies entered my life; watering those seeds, fertilizing them here and there, until they blossomed into a passion for God and for the written word.

I haven’t seen Mrs. Mitchell for years. But one of my greatest joys will be when I am able to present her with a copy of my book Love’s Memory, autographed by me, but dedicated to her. I am grateful to Mrs. Mitchell and pray that I may become a Mrs. Mitchell to many before God calls me home.

Shannon O’Donnell

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.