Today, it is an honor and pleasure to introduce you to my brothers and sisters in Haiti. Fellow human beings. Moms. Dads. Brothers. Sisters. Grandmas. Grandpas. Aunties. Uncles. Children. All of us, all of them, children of God. I am honored, their lives are honored by anyone who takes time to read this whole story. Unique in that it is the only blog post I’ve drafted completely on paper, much like a journal entry, and unique in that it is by far the longest post I’ve written besides the one about my sister. There are some stories I’m simply not willing to water down or skip over details for the sake of a reader-friendly 300-1,000 word blog post. This is one of those stories. In honor of Antonio.

I watched the sun rise over Haiti. It was Tuesday, October 16, 2012.

Our family was cruising on one of Royal Caribbean’s largest ships, Freedom of the Seas, stops at Haiti, Jamaica, Cayman Islands, and Mexico. Haiti, our first stop. Haiti, a port that especially piqued my interest when we booked. I first thought we could visit an orphanage where family friends have two babies they are adopting, only to discover the orphanage is across the island, not to be traveled in a short day. Then I thought we could sponsor a child and make a visit, only to discover that Royal Caribbean owns this private peninsula in Haiti known as Labadee, and doesn’t allow passengers to travel beyond the borders of that space for safety concerns. I’ve devoured blogs about Haiti – Ann Voskamp’s trip with Compassion International in July, this month the Help One Now bloggers in Haiti, Kristen Howerton had a little girl refer to her as “mommy” at an orphanage, a father tried giving his son to Duane Scott, Jen Hatmaker described a little girl sweeping the dirt floor. Those blogs made my heart hurt. I knew more than enough to know there was no way I was going to spend that day on a roller coaster or inflatable water toy in Haiti. We discussed and decided to forgo all shore excursions that day and instead sponsor a child in Haiti through Compassion International, spending all of our dollars at the market, directly in the hands of locals.

We got off the ship as early as we could, some of the first on the peninsula. We went all the way down to the end to the market, people begging us to come and see their items for sale. A hat for me and my daughter, bargained to $30 for the two, way overpriced (the ship sold similar hats yesterday for $10), but not worth further haggling considering what we knew about the need. A handmade sword for our son, and a mini painting, handmade easel and magnet for us. The man next door begging, pleading for us to visit, pointing out #4 on his tag. I told him we’d be back later.

Our two oldest kids’ first visit to another country and first time at the ocean, they were behaving like brats when we got to the beach that morning. I told them I was so sick of hearing them complain, I was going to write down what they said. “I hate this zipper.” “This is too rocky.” “This is the dumbest place ever.” ” Agh! I want to go to the market.” “All you guys do is sit.” “Wow mom.” With all seriousness, I reminded them that there are people on this island that might not have a thing to eat today, and they’re complaining about rocks and zippers.

My husband and I decided this was not working, so we would bring the kids back to the ship so they could partake in the day’s childrens’ activities. First, though, we were going back to the market. At first I thought the market trip might be rewarding bad behavior; now I know it was just what the kids needed.

This time, we went up on the right, past the colorful display of canvas. The first row of vendors, Max came out to greet, introduced himself, invited us in, “No obligation,” he said. “Come see. We are family.” We barely got in, plaques on the right at eye level carved with God Bless This Family and Jesus is My Boss. “You like these? Which one do you want?,” said Max. Sure, we’ll get one of these, I thought. Why not? Although I hadn’t a second to look at anything else. We bought the plaque and met the woman with Max, I can only assume his mother whose name I couldn’t understand, but she was warm and inviting and I gave her a hug and we bought a small square pot from her.

Next there was Margaret. She showed us dolls she sewed herself, oddly similar to ones we noted at Downtown Disney two days prior, only these black and red and white and so much more meaningful and authentic, ALL painstakingly hand stitched I noticed days later. We bought a doll and I took Margaret’s name. Her smile motherly and full of pride and joy over our love for this doll she had crafted.

It took me a while to realize and process that a man had taken our bag with plaque, doll, and pot, and was guiding us to his booth down the row. He offered to carve our name on the plaque we had purchased at Max’s booth. PEDERSON, on the back. He asked if we wanted anything else, showed us his wares. The kids, likely completely overwhelmed, had not a want for anything. “Sword?” said Derby. Already got that when we first arrived. Bracelet, Max had given us one. “Nothing? You don’t want anything?” Derby said. My heart broke. All I could keep thinking was my kids want for nothing, and it is possible this man might need for everything. To want for nothing, unimaginable. I find myself embarrassed for my children, our culture of excess, of everything all around. The look on his face when the kids wanted nothing will be seared on my heart forever. My kids wanting nothing might mean him not eating today, tomorrow. He was not just sad, he was disappointed, a devastated kind of disappointment. I could see it in his eyes. A reason for payment came to my mind – I paid him for carving our name on the plaque, thanked him generously, and left, many others calling. Looking back, I realize this moment was in a complete frenzy, another state, I was barely processing what was happening. We should have stayed longer at Derby’s place.

Jocelun led us to his place. He said in reference to my son “He is my friend. I like him.” and touched my son on the shoulder, all wrapped up in his cruise ship towel. Before I knew it, Jocelun had a necklace on my son, blue and white. Yes, we would buy. I asked for his name, I could not understand so he wrote. He scratched JOCELUN on my tablet. He said again to my son “I like you. You are my friend.” Tears streamed, overwhelmed. Jocelun wanted me to take another look. I told him I had promised a man down the row we would come back to visit. Only $2 left, I wanted it to go to this man and keep my promise. Jocelun realized I was serious and said “he’s a nice man, go” as he led me to the booth.

Wilfred was his name. Friendly man. Pots 2 for $5 he said. $2 accepted for 1 when I told him that’s all we had left. I took his name, shook his hand, big smile, clearly a warm and gentle heart.

Then, the floodgates opened. A crowd of Haitian vendors behind us, around us. One had somehow gotten my daughter’s small pot and carved her name on it with hearts. “I want you to remember me too. You come back and you see me.” Josias, the name he wrote on my tablet. I snapped a photo.

Another man approached, wanted to write his name on this tablet of mine. Leiys, I believe it was, barely intelligible. At this point, I realized I had stumbled upon something. These people were not only willing to share their names, they were eager. It meant something to them, more than I could grasp. They saw me writing their names on the little tablet of paper I brought in my bag and they wanted a place on that space. To be recognized, to be known, to be called by name. Isn’t that what we all want?

My husband, family, Royal Caribbean, and future cruise-goers will also be glad to know it was at this time I realized a security guard was close by, monitoring our interactions with the vendors, although I didn’t feel in danger, not even for a second. If I had felt in danger, we certainly wouldn’t have been there or stayed.

We went back to the woman with Max to find out her name. Between the two of them, they struggled to know each letter, silent glances to each other before each letter to verify that was truly the right way to spell her name, Almagor.

Returning to our spot on the beach, my husband took the kids so I could take a break. Stood for a while. This is no place to sit on the beach. Finally I sat. Looked down. I had forgotten the bag I packed at home to give to a local at this market. I looked through the photos I had taken of the vendors we just met at the market. Was the bag for one of these? Derby. The sadness in his eyes struck me. I processed the disappointment I sensed when the kids wanted for nothing at his booth. The bag was for him, his family.

Venturing back to the market by myself, I entered by Max. Max and Margaret and Almagor approached, others swarmed around. I explained I forgot I had this bag of clothes and was bringing it for Derby, 4 booths down. A man spoke definitively “I have a baby ma’am.” I had brought two receiving blankets and gave them to him. Margaret and Almagor hovering, nearly reaching in my bag, one of them said “I need something.” My hands could do nothing but take out each item and give to those who were asking. A dress for one woman, a dress for another, a shirt and skirt for Margaret, two bananas for a man. Margaret gladly took the bag, “I need this.” If I had only known, I would have brought another bag full, or two or three.

Then, more I didn’t anticipate. The others, swarming around to see if they could get just a piece from this bag that had been emptied and now was gone, started to tell me their names, their vendor numbers, what they needed. Too many to count, too many to even be able to notice, to process. I started writing.

Alfred, #22, clothes for a 7-year-old and 10-year-old.

Antonio, clothes for his 2-year-old son. I didn’t get his number. I wish I would have.

Jackson, #19A, he pulled me aside a bit to ensure I heard his need. Men’s pants, jeans, shirts, “anything.”

Reno, I had seen him earlier. He approached now again. “Remember me, Reno.” I wrote his name.

And Max. “Remember me. I’m the one that showed you here.”

Empty handed. Said I would do my best, but can’t promise. I remembered stories of Americans who promised they’d come back but never did. I didn’t want to be that person.

Before I left, those to whom I had given lavished me with smiles and gifts and gratitude. Bracelets, a hand painted shell, a small pot, and many “God bless you.”

Back to the beach. Husband and kids still gone. Looked up. Looked around. Still no time to sit. Walked the beach a bit. A mom rushing on the shore and so mad at her kids, a man’s fat belly, sunbathing, buffet being set. Did they know the need just beyond the arches in the market, beyond the fence that bound us in and them out? A Haitian man raked a patch of sand back to perfection.

As I thought and moved about, I was especially concerned about this man, Antonio, who needed clothes for his 2-year-old son. I knew I had none. I’d have to leave him empty handed, hopes dashed, or search and make a plea to some random mom. We were at the beach, a distance from the ship; a mom would have to give the clothes off of her son’s back or go all the way back to the ship to suitcases. This was my journey that day, not some other mom’s journey, or was it? I was confused, torn. Search for a mom with a  2-year-old  boy (there weren’t that many) and ask them to surrender part of their day vacationing with their family to meet the needs of a man I had met at the market? I couldn’t bring myself to ask even one, but kept thinking of the moms at home and how they’d all give the shirts off their sons’ backs for this toddler in need. Kept thinking of the boxes of clothes I had sitting in our basement. I didn’t even ask one mom. Two worlds collided. The reality I saw on one side, the reality I saw on the other. Could the two connect today? Was I telling myself truth that people wouldn’t want to know or didn’t care or just wanted to enjoy the beach? I think, I hope, my beliefs were flawed that day.

I do knot know. I still do not know. Not asking a mom still one of my regrets 10 days later. Why was I afraid to open eyes and hearts on that beach? Why not just one? Has a distrust of human kind grown in my heart? Why do I believe strangers want to sit on the beach in oblivion more than they want to meet someone’s most basic of needs? What does it say about my character that I assume such things about others and I didn’t even ask one? Didn’t Jesus say that whatever you do for the least of these, you do for me? Was I only partially fulfilling this command rather than wholly by my unwillingness to ask on behalf of someone in need?

Husband and children returned, I explained what I had done, listed the needs, my uncertainty about the 2-year-old clothing. My husband supported the kids and I going back to the ship where we had more. Somewhat close, but not a quick trip. Tram, lines, security, and a long, hot pier.

A pile of clothes for Alfred, a men’s outfit for Jackson, a pile of fruit for Antonio, the very least we could do in lieu of clothes for his son. (I have notable regrets about not getting more on that ship. We should have come back all hands loaded, bags and bags overflowing. Again, some of this was mere lack of time to process it all.) Security noticed all that fruit at the bottom of the bag and made us drop it in a plastic bin before we deboarded. Almost in tears, knowing I would now return empty handed to Antonio, no clothes, no fruit, nothing, I obeyed. A woman standing by said “you never know if you’re doing the right thing, do you?” Little did she know. Even my daughter knew this was bad.

We headed straight for the market. The buffet had been served while we were gone, and my husband was sitting at the beach. I was feeling a tear between these two worlds, again. Wanting, needing to help these people, knowing there was much to be done, yet also cognizant of the fact I was on vacation, precious hours together as a family, now ticking away, only a couple hours before we had to be back on the ship.

We approached. They swarmed immediately. I don’t even know how many, just swarms. So much, so fast, so overwhelming, so difficult to process it all. Alfred, Antonio, Jackson, Max, Reno and all the others were there. Alfred pulled me aside to his booth. I gave him the bag of kids clothes, he smiled, seemed satisfied.

Then Reno was there – I had seen him twice now, he told  me his name and then said “remember me,” but I became keenly aware  at that moment that “remember me” meant something much different to Reno than me. I remembered Reno, I noticed him and would remember him beyond this place, but he wanted me to remember him because he needed to be seen, he needed something and needed that to be remembered, wholly acknowledged, tended to, acted on. I hadn’t brought anything for Reno. All I could do was give him the shirt I brought for Jackson. After all, something would be better than nothing. I gave it to him, apologizing that’s all I had. He took and said “God bless you.”

Then Antonio – oh Antonio. “You remember me, I need clothes for my son.” I explained we had no clothes small enough and we tried to bring a lot of fruit for him, but security wouldn’t let us bring it off the ship. “I’m so sorry,” I said.

I felt so disregarding to Antonio’s unmet needs when I was pulled away by Jackson. He wanted to know what I had for him. Shirt to Reno, now all I had was a pair of shorts. They looked big for Jackson. I asked if he had a belt, he did. It will work.

And there was Max. “You have anything for me? I told you to remember me too.” Yes, of course I would always remember him, but I did not know he too intended me to remember him with something, anything tangible that he needed. “I have a son,” he said. He glanced at my backpack, I took it off and looked in. My husband’s shorts and a belt he was wearing that day, my son’s shorts and  refillable bottle of Pepsi leaking out. My son’s shorts – I had asked him on the ship if I could give those to the children in need. “No,” he said, “they’re my favorite.” “And the shirt,” I asked?” He was wearing both today, both his favorites. Two worlds collided, again. To honor my son and keep our trust, or take the the clothes off my son’s back and teach him our call to give to those in need? Could my son really process that he was giving up his favorite shirt and shorts, the ones he was wearing today, for a child he couldn’t see? Doubtful, but I was still unsure. Max clearly wanted the shorts and I even began lifting them out of the bag for him, but a man overheard and said to Max “don’t push too far, it’s not good,” clarifying for Max those were the shorts my son was wearing today. This was humbling. It felt so wrong but a little right all at the same time. Right we were honoring my son and not taking the shorts right from under him, wrong another child’s need was going unmet. I honored the elder figure who urged Max not to push and closed my bag reluctantly. It all seemed so selfish. I could have, should have just handed over the whole bag. We would have done without for a couple hours.

People still swarming all around and we were on our way out of that row, hands empty again except for the backpack. Antonio made his way forward again. “You don’t have anything for me? I have a 2-year-old. I need clothes for my 2-year-old.” I couldn’t help but think later – Who imagines themselves begging a stranger for clothes for their child? What a horrible reality. I had to tell him again we don’t have little ones (pointing to my bigger children) and how we had fruit but it was taken away. He clearly needed those clothes so bad. I told Antonio we had to leave soon, “I’m SO sorry.” NO words would suffice. “Good bye,” I said apologetically. “Good bye.” “I’m so sorry.” They wanted to know if I would be back. I said back to Haiti, probably not Labadee. “God Bless,” “Thank you,” is what I remember.

We returned to the beach. All were eating the buffet. My husband had been waiting, “perfect timing” he said. We talked about the people, what we gave, Antonio’s need for his son. My husband reminded the children that we can’t possibly help everyone, but we can hep some, and that is what we had done today. We ate, I almost became sick looking at the food, contemplated not even taking any, thinking of all the people so near in so much need. I took a burger, some fruit, an extra hot dog and two extra bananas. The hot dog I passed to a man in a band playing by the eating area, bananas later to a man lingering behind a bar near the pier, quiet desperation, waiting on survival.

I took a moment to quiet myself after lunch and enjoy the remaining moments for what they were. The beach was already clearing.

I kept thinking of Antonio still in need and how I dashed his hopes, Max, Derby too. I wanted to go back, but I was needed here now, and anything but clothes for their children would be such a consolation prize.

My children made a sand castle. A circle of castles, one in the center. I didn’t notice its beauty and symbolism until it was complete. Two clearly imperfect, my son pointed out to my daughter “those are horrible.” My daughter tore them down plus two more. Frustrated she could not fix them and make them perfect, I said quietly “Try. It won’t be perfect. Just try.” She remade all four and the creation was better than it was before. Better, not perfect.

None of this makes perfect sense to me, but as I watched the sun rise on the ship days later, still overwhelmed and tearful about the unmet needs, I realized God is in control, God has a design in mind, a bigger plan. And I want to be part of it. This? This solidified in me the desire to come back to Haiti. To do God’s work here. I have unfinished business here. My mind has already been working, dreaming up ideas, and something very specific already blazed its way to the front of my mind a day after we returned. I did notice, and I will remember.

Some day I hope to meet all of these sisters and brothers in heaven, and I will tell them I wanted to do more that day, and we will dance, and all will be well and all the injustice will be wiped clear.

And to the critics online that say the vendors in Labadee “virtually attack,” are “aggressive,” “hovering,” and “pushy.” I wish they could experience even an inkling of truth about the people of Haiti so they would realize that “aggressive” means I really desperately need something. “Hovering” means I want you to notice. “Pushy” means I really, really need something now. Please. “Virtually attack” means I am so desperate I just need you to see me, remember me, I am a person just like you and I need so much and you have no idea how bad it is.

As for my children…they were transformed after that second visit to the market. We never brought them back to the ship for childrens’ activities. They stayed with us all day and were delightful, never again complaining. Maybe it is service that heals selfishness? After the market visit, from my daughter “Mommy, Haiti’s a nice place.” Then later she had another realization “Mom, after this we turned good. It feels good when you’re nice to others.” And hours later, “This is going to be a big remembery for us, isn’t it?” Yes it is. Yes it is.

Our family took the path less traveled back to the ship. A little platform overlooked the ocean. The ship, man-made beauty. The ocean, God’s beauty. A small boat filled with market vendors and other employees from Haiti on their way back to the village placed it all in perfect perspective. My husband noted, the boat was named “Thank God.”

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

It is my pleasure to introduce you to my daughter Elsa and her friend Hannah, two girls that represent the next generation of moms! I have had this post on my heart for months, so I am happy to be able to finally share it with you today.

Months ago, Elsa had her friend Hannah over to play. I was changing my daughter’s diaper on the floor, and Hannah and Elsa were watching me. Out of the blue, Elsa said to Hannah “Are you going to be a good mom when you get bigger?” Taken aback by this question, I responded immediately with an adamant “You girls are going to be AWESOME moms!”

I don’t remember what else I said that day, but it doesn’t even matter. The fact is that I was shocked that my six-year-old was asking her friend IF she was going to be a “good mom” someday! I couldn’t help but wonder how it was she got to this place. How is it that in our American culture, a six-year-old has been exposed to so many messages about mothering, subtly and not so subtly, that she is already questioning a friend about her future mothering abilities? And what does that say about my own daughter’s confidence in her future mothering abilities? If she’s asking her friend “Are you going to be a good mom when you get bigger?” then she is likely asking that of herself.

Whether we innately want to be “good moms,” or this message is passed through our culture, or both, I have come to despise the phrase “good mom.” And the fact that my daughter already has a sense or fear about this “good mom” concept makes me want to stand up for all the girls of the next generation and say with all clarity and conviction – let’s eliminate the notion of “good mom” once and for all!

I was a “good girl.” I can’t say exactly what constitutes a “good girl,” but I know I was one. I didn’t do much wrong and I didn’t cause much trouble, and that’s just who I was.

So when I became a mother, I naturally wanted to be a “good mom.” The only problem was that I was never exactly sure what a “good mom” was, nor am I 10 years after becoming a mother. We all have a sense of a “good mom” when we see one, and there seems to be a lot of pressure to be a “good mom.” Even before I became a mom, I had people tell me I was going to be a “good mom,” but funny thing is once you become a mom and have some real experience behind you, nobody goes around telling you if you’re actually a “good mom” or not, so you’re never quite sure how you’re doing. Yes, your instinct tells you when you’ve done something right, and you’ll certainly find out when you’ve done something wrong as a mom, but there is no concrete definition of “good mom” we can use to verify YES, I’m doing this right, or NO, I’m doing that wrong.

“Good mom.” This nebulous”good mom.”

Does a “good mom” give birth naturally, medication free? Is she a “good mom” if she has an epidural? (3,680,000 results on Google search)? What if she has a c-section? (59,100,000 results on Google search)

Does a “good mom” breast feed until the recommended one-year of age? Is she still a “good mom” if she nurses until three months and then formula feeds (6,190,000 results on Google search)? What if she only formula feeds?

Does a “good mom” make her baby’s food from scratch, boiling organic food and then milling it by hand? Is she still a “good mom” if she just buys the old fashioned jars of Gerber baby food? (173,000,000 results on Google search)

Does a “good mom” stay home full-time to care for her children? Is she still a “good mom” if she chooses to work part-time or full-time, or if she has to work full-time or nights or weekends to make ends meet (132,000,000 results on Google search)?

Does a “good mom” send her kids to public school or private school, or does she homeschool? (2,290,000 results on Google search)?

Does a “good mom” hover over her children, supervising them every moment, making sure they are behaving properly, not getting in harm’s way? Is she still a “good mom” if she sends them outside to play and only checks on them once in a while? Or does a “good mom” play with her children and engage them during all waking hours so they can achieve optimal development? (24,600,000 results on Google search)?

Does a “good mom” prepare a homemade meal every night and include all the food groups? Is she still a “good mom” if she gets a basic meal on the table most nights and brings her kids out for fast food here and there? (2,140,000 results on Google search)?

Or how about some even more nebulous ones…

Is she a “good mom” if she gets called by her child’s principal because her child misbehaved in school? Is she still a “good mom” if she gets called two or three times?

Is she a “good mom” if she brought her child to school one day too soon after the lice treatments, and even after all the work she did, it’s discovered that the lice weren’t gone yet and have now spread to other children in the classroom? (I’m sure it’s happened thousands of times.)

Is she a “good mom” if her teen hates church when faith is the most important thing in the world to her?

Can she feel confident she is a “good mom” when her child has autism, a learning disability, attention deficit disorder, bipolar disorder, attachment disorder, some vague undetermined “not otherwise specified” or “developmental delay” or any number of diagnoses where the cause is unknown, not fully understood, and/or partially genetic, and she has therapists and doctors and psychologists reminding her of all the different ways she needs to parent her child? (Let me be clear on this one, the answer is YES.)

Listen folks. I could go on and on. This makes my head swim and seeing those Google stats makes me realize why moms have a hard time feeling confident.

The fact remains true. The definition of a “good mom” is nebulous and therefore unattainable.

Perhaps we should reframe our notion of “good mom” into something like “doing her best as a mom” or “loves her children with wild abandon even though she’s not a perfect mom.”

Give yourself some grace as a mom, extend another mom grace for her journey, and fully accept the grace God offers you every single day. I will never feel sufficient or proficient to carry out the task of mothering on my own, but I am not alone. For God says in 1 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.” Although we are not perfect human beings, nor perfect moms, and maybe not always “good moms,” we can rest in peace knowing there is a God that offers grace. And there are millions of moms, dads, grandparents, and others to provide support when we need help along the way.

So on that note, let’s ditch that old-fashioned notion of “good mom” for all the moms of the next generation.

For Hannah.

 For Lucy.

For Ingrid.

For Raegan.

For Eva.

For Annika.

For Riese.

For Haylee.

For Briana.

For Lexi.

For Ava.

For Emma.

For Julia & Lucy.

For Hanna.

My grace is sufficient for you, for my power is made perfect in weakness. 1 Corinthians 12:9

Amy

*A special thanks to all the moms that gave me permission to use their daughters’ pictures in this post.

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 with love that I introduce you to my college sweetheart and husband of 14 years, Seth.

In a room full of people, Seth tells me I am the most beautiful.

He tells me I look beautiful even when I don’t feel beautiful.

He says to our kids “Don’t you have the most beautiful mama?”

Seth offers manicures and pedicures, but being low maintenance with hair and nails, I never take him up on the offer.

At least once a year, he gives me a complete outfit from my favorite store, always more than I feel is necessary.

When our baby was days old and I was in severe pain from nursing and the kids had taken every last drop of my energy, Seth took my hand and danced with me in the hallway.

When I’m crying in fatigue or frustration, or ranting and raving because something didn’t go as expected, he listens and invites me closer.

And when I reach my end, need a break, when I need filling up, when I’m not so beautiful on the inside anymore – Seth gives me the gift of freedom to do what I need to do to become beautiful again.

My father-in-law and mother-in-law gave me money for my birthday, the only request to use it for something that makes me happy. I knew just what I wanted – to attend a Women of Faith conference where my favorite blogger Ann Voskamp was scheduled to speak. I really needed a weekend away by myself.

I found a floor level ticket on Craigslist. Cyndi promised via phone “you won’t be disappointed” with the seat. Seth, although leery of Craigslist scams, gave me permission to purchase the ticket.

So three days ago, Seth got up, packed the car, loaded three kids, and was off to his parents’ house.

And so began my weekend. The gift. From Seth: The gift of freedom to attend the conference and do whatever it was that helped me feel all was right with the world again.

The gift of being lost in time…laundry, finances, phone calls, putting toys back in their place, organizing files, email, getting ready for the day without kids at my feet. Five hours.

Lost in time so much I forgot to research how long it would take to get to the conference. The trip was 1 ½ hours longer than I thought! If things went perfectly, I would arrive a half hour before the event would start.

One hour into the drive, I hit road construction, driving 5-15 mph for at least 45 minutes.

The gift of accepting what was. It was ok if I arrived late.

The gift of freedom to run in and out of Jimmy John’s, kid-free.

The gift of a quiet drive by myself, the open fields, the windmills. The wind at my back.

The gift of free choice, flipping through radio stations, stopping at songs that spoke to my heart and soul. Jesus Take the Wheel by Carrie Underwood, I Can’t Make You Love Me by Bonnie Raitt, Amazing Grace by Chris Tomlin, too many to count.

Car says I have 20 miles of gas and sign says I have 15 miles to Des Moines. I’m not sure I can make it. I fill, just enough to get me there. Isn’t that the way it’s been?

The gift of time. I arrive at the hotel at 6:49, event starts at 7:00.

The gift of learning to trust my intuition, again. Cyndi was not a Craigslist scammer. The ticket was real!

The gift of accepting a table prepared for me. Opening the curtain to see a full arena, beautiful music overwhelming, down a long flight of stairs to the floor level, tears welling up in my eyes as I was led to my seat by one, two, three people, transferring my care along the way up to the 4^th row, front and center. My seat did not disappoint.

The gift of laughter. Ken Davis made me laugh so hard I cried. I can’t remember the last time I did that.

The gift of Sheila Walsh’s words “Can you imagine if every day you believed the God of the Universe loves you just the way you are?”

The gift of a beautiful voice in CeCe Winans.

The gift of a quiet room, a bed to myself.

The gift of putting my feet up.

The gift of pizza delivery to my hotel room.

And the next day…

The gift of Liz Curtis Higgs’ words “You are beautiful, right now, as you are, to this God.”

The gift of Christine Caine’s unflinching desire for us to proclaim “Today, I’m going to step into the purpose and power of God.”

The gift of finding myself reflected in a woman I had never heard of before today, Angie Smith. My fears, my dreams, all reflected in her on stage.

The gift of being seen. The original purpose of my journey, to see Ann Voskamp speak, now more than fulfilled, I walked as quickly as I could to the autograph area. I was 31^st in line of 35 allowed to photograph and autograph with Ann. My heart was racing, grateful I made it in time. I grabbed the attention of a stranger and arranged for a picture of me with this Ann whose blog has spoken to my soul for two years. Just 3-4 people from meeting Ann, we got word they were shutting down, “only two more.” Ann had to go. I saw the guard approach, I saw Ann’s panic, I saw her heart turn to us remaining in line, looking at each one of us, eyes full of disappointment she could not greet us then smiling in a resigned, apologetic sort of way, cupped her hands with gratitude uttering “thank you,” waved, and turned away with the guard. It took me a while to realize I had welled up with tears of disappointment; I was distracted with amazement and gratitude that those of us left in line were acknowledged so whole-heartedly. Though I did not get to meet Ann, my eyes were fully open in that moment to see deep into her heart. Moments later, Ann on stage, I realized the pull she must feel between her heart and current reality, her book One Thousand Gifts on the New York Times Best Sellers List a crazy number of weeks.

The gift of authenticity accepted in Selah’s Amy Perry. Her story and then song through tears, moving the audience to ovation.

The gift of feeling like I could be me.

And on the way home, I stop at Boondocks USA gas station with only 23 miles of gas remaining. And this time I fill up, and I am filled up.

And when I got home….

The gift of hearing God speak quietly to my heart as I walked in the door – now write it out, live it out. I did, and I will.

Thank you Seth, my dear love of my life, for giving me the gift of this weekend. This gift of freedom, of time, of renewal and refreshment, of remembering who I am and who I want to be, of drawing closer to God, so I can be the wife and mama I want to be.

Amy

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.   1 Corinthians 13: 4-7