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 my honor to introduce you to Shawna whose actions served as inspiration for this blog!

I first met Shawna at a Home & Garden show early March 2011. I was strolling through the exhibits with my family and we happened upon Shawna’s booth which featured handmade flower clips. The beauty of the flowers caught my attention. My daughter who is very much into fashion was right behind me. I remember picking up many flowers that day, gently handling each one, viewing them from all angles, admiring the artistry within each creation, and taking special note of the fabrics I found to be most beautiful. My daughter followed suit and began begging me to buy her one. Being the practical and sometimes frugal person I am, I told my daughter “no” gently but as firmly as I could, took a business card, and promised we could call Shawna if we needed flowers for my daughter’s flower girl debut at a wedding the following month. I smiled, said “thank you” to Shawna, and began walking away. Shortly after we left, Shawna came after us with flower in hand. Clipping the flower on my daughter’s boot, she said “this is for you” with a big smile. My daughter broke out in a grin from ear to ear, as did I. We thanked her for being so kindhearted and promised we would be in touch. I couldn’t believe that a complete stranger would be so kind as to give my daughter this beautiful fabric flower clip…just because she had a big heart for a little girl passing by.

Needless to say, when it came time for flower girl preparations later that month and the bride gave us free reign to find a flower for my daughter’s hair and for the flower girl dress, I embraced the opportunity! I contacted Shawna and she advised me to pick out an assortment of fabrics that would match the dress. I poured over all of the options and landed on four or five fabrics I found to be beautiful and matched the color scheme for the wedding. I met Shawna at a local bagel shop, fabrics in hand along with a picture of the flower girl dress for inspiration. For some reason, I vividly remember the large container of fabric flowers Shawna brought that day as samples. She picked up each delicate flower as if it was a masterpiece worthy of great care, just as I had earlier that month at the Home & Garden show. Ultimately, we agreed I would need Shawna to make two flowers, one large for the flower girl dress and one small one for her hair. We parted ways and Shawna promised flowers in one week.

One week later, Shawna and I met again at the bagel shop. This time Shawna had a box of flowers in hand, a beautiful gold box with silver tissue paper lining. Let me be clear. I expected Shawna to bring TWO flowers that day. Instead, she brought SEVEN. One stunning large flower for the flower girl dress, two flower trios for my daughter’s hair that were beautifully arranged miniature bouquets, one “extra” flower she “just made up quickly,” and three little purple hair clips for a cute added touch. I was absolutely stunned. As Shawna pulled each flower out of the box to show me, I could not believe that not only did she meet my expectations, but she exceeded them far beyond most people have ever been able. I remember experiencing such joy that I felt like I was on the edge of tears the whole time she was presenting me with the flowers. I noted, too, that Shawna was glowing with excitement as she shared with me her creations. It was so clear to me that Shawna had a very special gift and she did not hesitate to use it to bring joy to others’ lives. I left, flowers in hand, feeling blessed beyond belief. A week later, I experienced the joy all over again when the stylist chose one of the flowers for my daughter’s hair, and I pinned a flower on her flower girl dress just hours before she walked down the aisle.

To this day, I have kept the box of flowers in a special place in my closet. I never threw away the box because I want to always be reminded of the special gift Shawna brought to me that day. Those flowers were so much more than fabric pieced together for a flower girl’s hair and dress. They were a reminder that there is always beauty to be discovered in this world, that God has endowed each one of us with special gifts that He longs for us to share with others, and that I need to be much more intentional about seeing and experiencing the joy others bring to my life. If I enter each day having an extremely high set of expectations, I will ALWAYS be disappointed. If I enter each day asking God to give me fresh eyes to see what is often unseen, my expectations will always be exceeded far beyond what I could have imagined.

Today I challenge and encourage you…

Are you living life slowly and intentionally enough so that you can truly see people?

Do you accept the gifts others bring into your life, or do you overlook or disregard these gifts because you are too busy to notice or don’t feel worthy?

What special gifts do you possess? Are you using your gifts to make a difference in others’ lives?

We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith; if it is serving, then serve; if it is teaching, then teach; if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully. Romans 12:6-8

Amy