Journey

Spring 1984—Mom watched Randy after school until his parents got off work. The bus would drop him off at our little townhouse where he would spend the next few hours. Randy was a teenager with dark hair and a heavy build. Randy loved to eat the food Mom fixed for him. One day on his third helping of a dish he particularly enjoyed, he was curious to know the ingredients. When Mom mentioned “peanut butter” his eyes grew wide and much to Mom’s exasperation he exclaimed, “I can’t eat anymore. I don’t like peanut butter!”

One of Randy’s favorite pastimes when he visited us was to look through Mom’s jewelry box. She would set it out for him, and one by one he would study each piece with great care and wonder.

Randy was my buddy. Though he was sixteen and I was barely two we had a wonderful time together. I would sit on his lap and we would count together…one, two, three…Randy had a hard time getting past three, but it didn’t seem to bother him when I would count up to ten. It didn’t bother me either. Randy was my friend, and I looked up to him because he was older than me. I didn’t know that Randy had Down syndrome; I didn’t even know what Down syndrome was. I knew that Randy was nice and fun, and I loved it when he came over to play…I have no personal memories of Randy; they were lost somewhere back in the early years of childhood. I remember Mom’s stories, though, and I remember a snapshot of me sitting in my friend’s lap, an unlikely but happy duo.  

***

1995—Michael’s family only attended our church for a few years. His parents were an older couple who could have just as easily passed as his grandparents. Michael was just a little boy, old enough to walk but not yet in school. I watched him in the nursery on occasion with some of the other children. As a young teen who loved children, I looked forward to nursery duty. My biggest memories of Michael are his big brown eyes and contagious smile. I knew Michael had Down syndrome but didn’t have any clear ideas about what that meant. I knew he was a bit slower than other children and looked a bit different than other children, but I just treated him like the other children. He was a little boy, and he was adorable.

***

2000-2004—My college years. Emily worked in the cafeteria on campus. She was very short, and so I was surprised to learn she was actually a few years older than me. She worked hard, staying focused and task-oriented. If someone she was not acquainted with approached her, Emily would fold her arms, narrow her eyes and ask “Do I know you?” Emily loved the movie Grease. So much in fact, her family gave her a specially made “Pink Ladies” jacket, which she proudly sported around the campus.  Emily’s dad was a religion professor for the university. He was also very focused and task-oriented but fun, well-liked and respected by his students. Emily had her daddy wrapped around her little finger. One cell phone call from her would interrupt any class at any time. Sometimes she called just to say hi, but sometimes she called to let her daddy know her blood sugar was too high or too low, and he would drop everything to rush home and check on her. My knowledge of Down syndrome was still next to nothing. I knew I had heard somewhere that people with Down syndrome had shortened life spans, and I felt sad for the professor and his family, wondering how long they would have with Emily. My information was outdated at best.

***

December 2008—We were in MN with my husband’s family for the holidays. I was just entering the second trimester of my first pregnancy, eager to show off the beginning of my “baby bump.” Shawn and I were ecstatic and knew I carried the perfect child inside of me. During a Christmas celebration with my father-in-law’s side of the family, I met Clint. Clint was my age and was the brother-in-law of one of Shawn’s cousins. He occasionally came along for family gatherings with the Hemmingers, though this was my first time to meet him. Shawn had become acquainted with Clint several years before at a graduation event. He remembered Clint’s name and was intentional to introduce us. Though his speech was difficult to understand, we tried to make friendly conversation with him. As the day carried on, though, I noticed that Clint stayed to the side and didn’t join much in conversations or activities. He stayed close to his young niece and nephew or sat by himself. Clint was very friendly and happy to talk if someone made the initiative, so I found myself building a puzzle on the floor with the kids and engaging with Clint. Obviously touched by the fact that my husband had remembered his name and shown him kindness at their first meeting and again that day, Clint went on and on about how nice Shawn was and how much he liked him. He told me about a bit about his group home and about his girlfriend, a topic he was very proud of! Though I’m sure I missed a lot of what he said due to his unclear speech, I was happy to have a chance to be a listening ear and show him kindness. I would not be entirely truthful, however, if I did not admit that I experienced some discomfort as well. I still knew so little about Down syndrome, and some of Clint’s behaviors and mannerisms were awkward to me. Though I wanted to show love to him, at times I would find myself looking for a way to excuse myself from further conversation, at least for awhile.

***

March, 2009—Our prayer group was hosting a special speaker from out of town. The woman had her children with her, one of whom was an elementary school-aged girl with an extra chromosome. That night a testimony was given from a member of our group, who was a long time friend of the speaker, about how much she had experienced God’s love through this little girl’s affection. After the meeting the little girl came up to me, staring intently at my rounded belly. She stretched out her hand, touched me and exclaimed “Fat!” before walking away. She repeated this a second time before the night was complete. I laughed at her boldness and her innocence. However, seeing this little girl made me think of the blood test just a few months prior that indicated I had higher risk rate to have a child with Down syndrome. Not wanting the risks involved with an amniocentesis, we opted to have some specialized ultrasounds. The baby’s measurements appeared normal, and we were convinced the blood test had been a false-positive reading. I was so relieved.  

***

May 2, 2009—The chapel at the university was packed and overflowing as people filled the seats for the upcoming graduation ceremony. Shawn was out of town for a few days, so I attended alone on behalf of both of us to see our friend receive his degree. Big, pregnant, and extremely uncomfortable, I wondered if anyone would recognize my plight and offer me a seat. I finally found favor next to some acquaintances from the university and settled my tired body into the cushioned seat. As I watched the crowd around me, I noticed Emily running up the steps of the chapel in the direction of the bathroom. Her father, wearing his official graduation attire, sat on the stage with the other professors and administrators, keeping a watchful eye on his daughter, even from a distance. I wondered what life had been like for him, his wife, and their other children. My mind wandered back to January, and the brief scare that our baby would have Down syndrome. I felt my son kick inside me, and felt relieved again that I hadn’t been asked to walk that road.

***

May 22, 2009—Benjamin Lee Hemminger was born with an extra chromosome and numerous complications. I suddenly found myself thrust onto a road I didn’t want to walk, a road that appeared so dark and uncertain. Every step was shaky, and I had no sense of direction. The only thing that was certain was that this was my son, and I loved him no matter what.

***

September 26, 2010—I have been on this road one year, four months, and four days. The darkness of those early days has lifted, though there are still many steps that feel uncertain. The incredible love and joy I have in my heart for my son gives me direction, though, and the love of my Heavenly Father steadies my steps. I am privileged to be Benjamin’s mother, and it is my delight to love him. As I have reminisced today, I realize that my journey with Benjamin began before I ever knew I was on a journey. Even as a two year old in Randy’s lap, the egg that would join my husband’s seed to conceive our beautiful son was within me. In a small way Benjamin was already a part of me and has always been a part of me. In His wisdom and sovereignty, God gave me opportunities throughout my early life to see individuals with Down syndrome, though I did not recognize the significance at the time. He knows every step of my journey, past, present, and future and lovingly gives me sign-posts along the way. It’s a journey I never expected, a journey I would not have requested, but it’s a journey I will cherish every day. 

Joy in the Pain

I only logged on to check the weather. The sky looks overcast today, and I want to know how I should dress myself and Benjamin. The internet opens to our homepage of MSN. I have no idea why that’s set as our home page. Neither of us even uses hotmail. We’ve just never taken the time to change it. (Since this was written last year, we have changed it!) As the pictures come into view, a particular one catches my eye—a peaceful, sleeping newborn curled up in a basket of sorts. It reminds me of an Anne Geddes pose, though this article is highlighting a sister photography duo. There’s a link to view 24 pictures of sleeping babies. I can’t help myself and open it up, calling for Shawn to come and see. We ooh and aah over the adorable photos of newborns asleep in baskets, buckets, sarongs, or cradled in hands. I even open the short video interviewing the twin photographers as they discuss their strategies for capturing such unbelievable poses. They also discuss their new book, something about babies in a dreamland. The pictures seem like windows into another world, a world in which everything is peace, safety, and pure happiness. The video even highlights one set of customers, who so wanted to capture the first sweet moments with their newborn, they drove an extra distance to the photographers’ studio to let the sisters work their magic.

I finally navigate away from the page to check what I really intended to see. The forecast today gives a high of 66 degrees with possible rain. I log off the internet and get ready for my shower, thoughts tumbling through my head. The pictures made me smile; I couldn’t help myself in the face of such pure adorableness. Viewing the photos brought a tinge of pain as well. I can’t help but think of my own newborn pictures of Benjamin, all in the NICU, with his array of tubes, wires, and ventilator. Like the pictures of the sleeping babies he too was asleep, though his was a sedated, unnatural sleep. Instead of the pink, healthy newborn skin  his was gray and ashy, followed by a yellowed tint as jaundice set in, and redness as his belly swelled bigger and bigger due to kidney failure. Instead of pictures of a baby sleeping peacefully in the parents’ arms, our pictures show us touching little hands in the NICU bed, our only contact with our son for the first nine days of his life. None of the pictures are printed. They are all still saved on the digital camera and computer. They are not the sort of photos to frame and proudly display on a wall or bookshelf. They are shots that speak of uncertainty, helplessness and pain—not the joy of a new arrival.

The thoughts and words I am now writing flow through my mind as the warm water of the shower flows over my body.  As I think and remember, though, an important realization comes to mind. The babies pictured in dreamland may appear to come from perfect families in perfect homes with perfect lives, but I know this is not the case. It can never be the case, for no family is perfect, and no life is immune from pain and troubles. I find myself wondering what the stories behind the babies might be. What is life like in their families? What struggles have they had to face? Most importantly, do they know the One who can sustain them through those troubles? I have experienced pain, but I have a Friend who’s walked with me every step of the way. I have cried many tears, but I have a Comforter who’s caught each one in bottle and considered them precious. I have had many questions, but I have a Counselor who speaks peace to my heart, even when I don’t understand.  I have felt helpless and afraid, but I have a Father who’s wrapped me in His embrace and assured me of His love and protection. Yes, I have had pain…but I know the One who enables me to discover joy in the midst of the pain. I want others to find Him as well.

God's Formula

This was originally written nearly a year ago...but we're still nursing, though not as much! : )

His beautiful eyes stare into mine as the milk begins to flow. Those big blue eyes with the delicate Brushfield spots gaze at me with trust and adoration. In between gulps he pulls back just to smile and coo. Warm milk drips down my skin, but I don’t mind. My baby just smiled at me. He lifts his chubby hand to my mouth, waiting expectantly for my kisses. If I don’t respond quickly enough, he grabs hold of my lip, eyes locked onto my own.  At almost 11 months and nearly 24 pounds, this is still his favorite part of the day; mine too. The bond that we share is precious, and I wouldn’t give it up for anything.

Some people are surprised that I’m still breastfeeding, and they certainly can’t imagine me nursing Benjamin past his first birthday. Over the months I’ve heard the subtle comments such as “Oh, you’re still nursing?” or “How long do you intend to breastfeed?” or “When he goes on the bottle…” What they don’t realize is that he’s not going on the bottle. I want to give my son the best start I can, nutritionally, relationally and developmentally. My milk is “God’s formula” as our wonderful pediatrician loves to say. Benjamin is learning to trust and to love at my breast. His tongue and jaws are gaining strength as he pulls the milk from me, all preparing his muscles for future speech.

My mother nursed my brother and me into our toddler years. I think we are the better for it. I dreamed all my life of nursing my babies. I’ve had to fight hard to fulfill this dream, harder than I ever imagined. I am going to cherish this time.

There was the month of pumping in the NICU. The lactation consultant taught me how to hook up, operate, and clean the Medela breast pump and attachments. It was the hospital grade pump, the Lexus of all breast pumps. My emotions swung back and forth between gratitude for this device that enabled me to build and maintain my supply and resentment for the sterile, mechanical hum of a machine in the place of my baby. There was the exhaustion of pumping every 3 hours around the clock while recovering from a C-section, coupled with the emotional wounds that were constantly bleeding. There was the constant bottle of water on hand—drinking, drinking, drinking. There was the ravenous appetite as more and more calories went into milk production. There was the thrill of watching the small bottles slowing filling more and more as the days went by and my supply was built up.  There was the bitter-sweetness of seeing my milk fed to my son through a feeding tube straight into his stomach; tiny amounts at first as his tiny system adjusted.  At least he was still receiving nourishment from my body. There were the first few failed attempts at nursing and the slow process of learning to bottle feed with the therapist. Breathe, suck, swallow. There was the devastation of hearing they had run out of my milk one night and had to supplement Benjamin with formula. My milk was one of the only things I had a measure of control over; one of the only things I could give to my son at that point. I cried, feeling I had failed him. My resolve to persevere with the pumping was strengthened even more.  There were the constant nagging fears that Benjamin may never breastfeed, as medical professionals reminded me of his low muscle tone and possible poor sucking reflex common in babies with Down syndrome. There was the first precious time Benjamin latched on for a moment and looked up at me with wonder and confusion in this little face. How many ways are there for me to eat? I could almost hear him thinking.

Then we were finally home, and there was the nipple shield to enable him to latch on. There was the struggle of holding his floppy neck steady, directing him to my breast as he rooted around, and holding the nipple shield in place. All too soon there was the second trip to the hospital for open heart surgery and the extended two week stay. Once again there was the rhythmic humming of the Lexus pump around the clock. Once again there was the stress, exhaustion, and the fear I wouldn’t be able to maintain my supply. This time there was a heightened physical ache to hold my son close to my breast again and feel the sweet release.

A few weeks later there was the second home-coming and the supplementing with bottles of milk I had already pumped while I built up my supply again. In time there were the first few awkward experiences of breastfeeding in public with my special nursing cover, complicated by the use of the nipple shield. Eventually there was the long process of weaning Benjamin from the nipple shield. When he was in a calm mood, he could latch on to my right side without the shield with some patience and coaxing. The left side seemed to create more problems. If he was in a fussy mood, he would fight and scream until I gave in and put the shield back in place. There was the excitement when he was finally able to latch on to both sides and the relief when the nipple shield was put away for good.

Today, Benjamin is a pro at nursing. He quickly latches on without my assistance, eager for the warmth and comfort of Mommy’s breast. The milk is paying off too. His arms and legs consist of delightful rolls, his tummy is big and round, and his cheeks are so plump and kissable. Strangers comment on what a cute and healthy baby he is. Healthy-that word is so special to hear. Most people appear to have no awareness of his Down syndrome. They would never guess the premature birth, the ventilator, tubes and wires. They know nothing of the jaundice, the bloated stomach when his kidneys shut down, or the home-coming with nose canules and oxygen tanks. They would never imagine the open heart surgery and slow recovery. They have no idea about the ER visits leading to the discovery of double hernias and the following surgery. They are oblivious to the onset of seizures, infantile spasms to be exact, and the six week treatment of shots. Failed hearing tests and ear tube surgery never crosses their minds. They simply see a beautiful, healthy, baby boy…which he is…my little miracle.

A Mended Heart

It was one of the most difficult moments of my life. Shawn and I stood with Majors Alan and Cheryl  (our pastors) in a hallway at St. Francis Children’s Hospital in Tulsa, OK. In a few moments two-month-old Benjamin would be taken back for open heart surgery. I held him close to my chest, while two nurses patiently waited for us to give our son some final kisses and cuddles. With an aching heart, I handed my tiny baby to one of the nurses, not knowing when I would hold him again. She looked at me compassionately and assured me, “We’ll take good care of him.” I nodded in appreciation as the tears welled up in my eyes. After we watched them disappear with Benjamin, we turned and walked the other direction to the waiting room where we would stay for the four-hour long surgery. I felt like I was in a bad dream, but I knew I wasn’t going to wake up. This was real.

It started a week and a half prior on July 6, 2009. Benjamin had only been home for a little over two weeks when we took him to his first cardiologist appointment. After looking at our son’s heart through an echocardiogram, Dr. Kimberling told us it was essential that Benjamin have surgery in the near future. If his condition was not treated within 6 months, it could become fatal.  He said he would discuss Benjamin’s condition with the heart surgeons at their meeting on the 10^th, and he would get back with us. Shortly after that meeting, we received a call from his office giving us a number to call to set up a consultation with the heart surgeons. I made the call on the 13^th, expecting to set up an appointment for discussion. Shawn was at work when I called, and my father-in-law D.J. was visiting but would be leaving in the morning to head back to MN. He was out getting a repair done on our car, so I was alone in the house with Benjamin. I was not prepared for the information I received on the other line. There was not time to set up a consultation. Dr. Nikaidoh, the best heart surgeon available, would be going out of town shortly, so the surgery needed to take place that week. In the numbness of my shock, I wrote down the necessary information. We needed to report to the hospital on Wednesday the 15^th for pre-operation procedures and surgery would take place early in the morning on the 16^th. They assured me that this surgery was routine with a very low risk rate, and we could expect Benjamin to be discharged in 5-8 days. I hung up the phone, the reality started to sink in, and the tears began to fall. I wasn’t ready to have my son back in the hospital; he had only just come home. Through my tears I called Shawn and shared the news, which stunned him as well. Shortly after, D.J. returned to the house and presented me with a little Winnie the Pooh plush toy with a rattle inside that he’d picked up for his grandson. Fighting to contain my emotions, I told him what I had learned. He just listened, not knowing what to say. The next morning he was supposed to be on the road at 9:30 in the morning. Instead he held Benjamin for close to two hours, finally relinquishing him to me and heading out late in the morning.

The next day before leaving for Tulsa, I sat nursing Benjamin in his nursery, knowing this would be one of the last times I would hold him to my breast before surgery. Benjamin was only clad in a diaper, so we could have some skin to skin contact. I looked down at his smooth little chest, knowing that the next time I sat here with my baby I would see a long scar. That afternoon was horrible. Benjamin had to have blood drawn for surgery, but due to his long stay in the NICU, all of his good veins had already been “tapped.” It took four sets up people to finally get blood drawn from him. The first attempt was made by hospital nurses, the second attempt by pediatric nurses, the third attempt by a surgical assistant, and the fourth and finally successful attempt was by one of the heart surgeons herself-- she had to make incisions in his hips. Due to the small space, we were finally asked to step outside, though we could come in to hold and comfort our son between the failed attempts. While standing outside, Shawn and I held each other as the tears flowed, while we helplessly listened to our son’s unbearable screams. We were completely drained, and we hadn’t even got to surgery yet.

That night a good friend came into town and took us out for a nice dinner before we settled in to get a little bit of sleep at the Ronald McDonald house; (I couldn’t believe we were there again so soon). Before laying Benjamin down for the night, I nursed him one final time. He wasn’t allowed anything after midnight, and I knew the morning would be difficult for him. As I lay down and tried to sleep, I felt the familiar beginnings of heartburn and acid reflux that had been plaguing me since shortly after Benjamin’s birth. The late night meal and the overwhelming stress had triggered a major attack. I was up for the next several hours in misery, getting sick in the bathroom and feeling as though my chest and back were being repeatedly stabbed with blades. I cried and paced and prayed; this felt like too much to handle on the eve of my son’s open heart surgery. When the symptoms finally began to subside, Benjamin began to stir. I held a pacifier to his mouth, hoping we would fall asleep again. When Shawn took over for me, I crawled into bed, hoping to get one or two hours of sleep before we had to have Benjamin to the hospital. I was exhausted.  

After checking in at 5:00 am, we were directed to a room in the pre-surgery wing. It would be 2 hours before Benjamin was actually taken back for surgery. He was hungry and angry and screaming. In between trying to hold and comfort him and trying to listen to the nurses that came in and out, I somehow managed to doze off for awhile. Soon, Majors Alan and Cheryl arrived to sit with us through our difficult day. We were so thankful for their presence. When it was finally near time for surgery, Dr. Nikaidoh came in to meet us, speak with us, and pray with us. An elderly Japanese man in excellent health, he is a world famous heart surgeon who has traveled the world teaching his own procedures. He is also a strong Christian man, and he so encouraged and blessed our hearts as he prayed over our little boy, thanking God for His plans for Benjamin’s life. We learned later that he will not begin anything in the surgery room until he and his team pray together. We were even more blessed to learn that Dr. Nikaidoh had only been in Tulsa for less than a year. He had planned on retiring, but felt led to come to Tulsa first. We felt as though God had sent him for us!

During the four hour wait, we were kept updated on Benjamin’s progress each hour through a phone call directly to the waiting room. We were thankful for each good report. When surgery was completed, we were told we could stand in the hallway, and watch them wheel our son by to the PICU, but we would have to remain in the waiting room a little bit longer before we could go join him. As we watched the surgical team pass by, we tried to get a glimpse of our baby, almost hidden in the giant hospital bed and array of tubes, wires, and bandages. When Dr. Nikaidoh saw us, he simply pointed to heaven and said “He is good.” Shortly after, he came to the waiting room with a hand drawn diagram and explained Benjamin’s surgery to us step by step. We couldn’t have asked for a better surgeon!

When we finally were able to join our son, we weren’t quite prepared for what we saw. A large tube came out of his chest, draining excess blood from the surgery site. He was hooked up to so many tubes and wires—so many more than he had in the NICU. He was on a ventilator again and heavily sedated. We were told he would be on the ventilator for a day or two. However, due to complications with fluid retention and pulmonary hypertension, Benjamin remained on the ventilator for another nine days. His 5-8 day projected stay extended to a two week stay. It was a long two weeks. During the height of his fluid retention, we could hardly recognize our son; he was so puffy. My arms ached to hold him again, almost more intensely than they had the first week after his birth. I know knew what it felt like to hold him close to me, and I longed to hold him again. Though I wrestled with some guilt for not staying in the hospital with Benjamin, Shawn and I decided it would be best to stay in the Ronald McDonald house a block away, so I could get rest. I was exclusively pumping again, and I had to have rest to be able to maintain my supply of breast milk. The days were long and lonely as Shawn had to return to work and he was not able to come up to be with us every day, though he came as often as he could.

I filled the days with talking to my son, reading books, watching HGTV, and visiting with the PICU nurses and other families who had children in the PICU. The nurses and doctors were so loving and intentional with Benjamin. They clearly explained answers to all my questions and even offered information when I didn’t ask any questions. One day I had some surprise visitors from a local support group called “Mended Little Hearts of Tulsa.” They brought a gift bag and offered encouragement. Their visit was like a breath of fresh air. We also received so much love and support from family and friends, just as we had during Benjamin’s NICU stay. We were surrounded with reminders of God’s love.

Benjamin was finally well enough for his second home-coming on July 29, 2009. His chest scar healed beautifully, and he was such a bright-eyed and alert baby compared to his constant sleepy state before his surgery. The reports from his follow-up appointments with his cardiologist have been good. There is no reason to believe he will ever need another surgery. His heart has truly been mended!

A few months after we brought Benjamin home from surgery, some wonderful friends came over to talk with Shawn and me. They lovingly shared, “You have both been so wounded. You need to be intentional to seek healing for your hearts, so you don’t get stuck in this place.” Their words resonated deep inside us both; we knew what they said was true. We were existing day to day, numbed by our pain, confusion and disappointment. We had not lost our faith in God, but we weren’t moving forward either. So, we took our friends’ advice to heart and began to position ourselves before God, asking Him to heal us. We poured out to Him our emotions—anger, confusion, grief, fear, etc., knowing He was big enough to handle it all. We attended some weekend classes offered at a church in Tulsa on healing the heart and mind. Most importantly, we set aside at least a few nights a week to be still in the Lord’s presence. We would pop in a worship CD, lay on the furniture or floor and just “soak.” Often, it felt as though nothing was happening. Sometimes we would fall asleep. But, bit by bit, our hearts began to come alive again, and the thick fog began to clear.

Sometimes we would experience powerful things as we waited in the Lord’s presence. The most significant for me happened one night as I lay on the couch and listened to the worship CD play. Suddenly the image of handing my baby to the nurse before surgery flooded my mind, and I felt the rawness of the pain again. In my heart I prayed, “Jesus, where were You in that moment?” In my mind’s eye I suddenly saw myself handing Benjamin to Jesus, and He carried him back to surgery. My heart was overwhelmed, and as the tears flowed, I felt the sting of the memory begin to fade. The guilt I felt for not being with Benjamin 24/7 surfaced again as well, until I heard the Holy Spirit whisper to my heart, “I never left his bedside.” Oh, how good my God is! He is full of compassion and so intimately aware of everything that concerns me.  He loves my son so much more than I ever could, and the knowledge of His constant care for Benjamin has brought so much healing to my heart! In the natural, my son has a “mended little heart.” In His patience and love, Jesus is in the process of mending mine. I know He is faithful to complete what He has started, and I am confident that He will never leave my side.

"For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord."--Romans 8:38-39 (NKJV)