Today, I am so excited to introduce you to my childhood friend’s mom, Barb, who has stolen my heart with her homemade pickles since I was a little child!

Today, insights on living from two anonymous elderly women. The first, a woman I met months ago at Target. The second, a woman I met four days ago at Cub Foods. I wondered and ruminated over the first encounter for months, but it only made sense in the context of the second. Some learnings take months, even years to unfold. Had not my heart and eyes been open, this story, this lesson, would not be.

It was spring. I entered Target, baby heavy in the infant carrier wrapped around my elbow. It was no usual day. Yes, the week had been hard. There were things happening I didn’t understand. Things that made me cry, things that made me want to hide in a bubble, things that weren’t working. I had come to Target with a heavy heart, misunderstood, humbled, quieted. I wanted things right with the world again.

I walked to the string of carts just inside the door, like any other day. I noticed an elderly woman getting a cart in front of me, cane transferred from hand to cart. Baby and carrier in my left hand, I pulled at a cart to loosen it from the string of others. Got it. Started moving it forward and slightly to the right, but realized the front wheel of my cart had hit this elderly lady’s foot.

Shocked my sense of body space had failed, “I’m so sorry ma’am, I didn’t see your foot there,” I said.

“Didn’t you see ME there?” said this elderly woman in a tone shaming to my ears.

“I’m really so sorry, ma’am. I didn’t mean to do it, I didn’t realize I was so close to you.” I pleaded, on the verge of tears.

“You don’t have to be so cross with me,” she said. “You look so cross.”

Knowing in my heart I had been misunderstood, I apologized again, trying with all sincerity to make her understand I was NOT cross, but was very sorry for this mishap. To this day, I’m confident she did not understand, did not believe what I had to say. She thought I was cross and that I was a rude young woman in a hurry. As she departed, I wanted so desperately to chase after this woman and explain my heart away until she understood it all. But I didn’t. I just milled and milled, then finally had to talk about it with someone because this had cut to my core.

I spent the last seven months trying to make sense and make good of this incident. Out and about, I took time to really see seniors, acknowledge them, engage them in conversation. Maybe I just needed my eyes opened to the elderly, I told myself.

And then there was Saturday when all the pieces came together.

An elderly lady appeared from behind as I paid. I wasn’t expecting to meet this saint of a woman in the checkout line at Cub Foods. Warm, inviting jewel tones, pink lipstick, silver white hair, an unforgettable smile, and kind eyes that had seen much. She noted the cashier’s light, asking “Are you supposed to be closed? I see you turned your light off since I got in line.” Young man explained he was going on break once we were through. Elderly lady exclaimed “Oh good, you really need a break to take care of yourself. Good for you.”

She turned towards my children who were obediently packing bags of food as I had asked, smiled at them, then at me. I saw her notice and was intrigued by this woman. I felt comfortable to share I was proud because they stayed up really late at a sleepover the night prior and could be behaving much worse considering it was almost bedtime. As she passed with her two or three items, she so sweetly commented to my children, “I would be much worse off if I stayed up that late! You two are doing very well helping your mom. You have a great night.”

Sweet. Kind. Compassionate. Full of grace. A woman that notices, a woman that takes time to look deeper into the hearts of others. Not to mention as beautiful and poised as a woman could ever be. That’s who this elderly woman was and I was honored to have met her even for just a couple minutes.

And this time? This time, I wanted to chase after the woman and tell her how wonderful she was and how she was full of such grace and beauty, and how I admired everything about her in just a couple minutes of experiencing who she was. But I didn’t. I sat with it and thought how stupid it was to have left my camera at home and reveled in how magnificent this encounter had been, how it so strongly contrasted with my experience at Target months ago.

And so it is. We have a choice about how we will be in this world. We can fill others’ carts or empty them. We can choose to be a victim, leaving others feeling unsure, as if they failed or did something wrong. Or we can choose to be a warm, lovely ray of hope in this world, encouraging, noticing and loving others, and always full of grace.

May the elderly woman at Target experience acknowledgment and love from those in her circles, and may the elderly woman at Cub Foods continue to bring joy into others’ lives just as she did for me that day.

As for me, I need to surround myself with people that build me up, care for me, and love me for who I am.  May I not live life as a stressed out victim, but with grace and peace and love and joy, so others may see the light in me.

You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.  Matthew 5:14-16

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.