Christmas Reflections

The Christmas tree is up, the house has been decorated, and Christmas music has been playing. I love this time of year! This morning as I was getting ready, I popped in the CD The Nativity Story-Sacred Songs. One particular song, "Labor of Love," written by Andrew Peterson, really gripped my heart and brought on an unexpected flow of tears. The lyrics are powerful:

It was not a silent night. There was blood on the ground.

You could hear a woman cry in the alleyway that night on the streets of David's town.

And the stable was not clean, and the cobblestones were cold.

Little Mary full of grace with the tears upon her face and no mother's hand to hold.

It was a labor of pain; it was a cold sky above. But for the girl on the ground in the dark

With every beat of her beautiful heart, it was a labor of love.

Noble Joseph by her side, calloused hands and weary eyes;

There were no midwives to be found on the streets of David's town in the middle of the night.

So he held her and he prayed, shafts of moonlight on his face,

But the baby in her womb, He was the Maker of the moon.

He was the Author of the faith that could make the mountains move.

It was a labor of pain; it was a cold sky above. But for the girl on the ground in the dark,

With every beat of her beautiful heart, it was a labor of love.

It was not a silent night on the streets of David's town.

 

As I thought of Jesus' birth, my mind went to my own son's arrival, and the trauma surrounding that time. Though there were major complications, every resource was in place to provide him with the best possible care and to help ensure his survival. I am very thankful for all of those things. However, I was overwhelmed at the thought of my Savior being born in a cold and filthy setting, received by two exceptional young people who chose to cling to their trust in God in the midst of difficult and perplexing circumstances.

I thought of my own precious baby in my womb, so small and delicate, completely dependent on me for life by God's design. I wept as I considered Almighty God taking the form of an embryo, growing and developing over the months in Mary's womb. She felt His kicks and somersaults, and watched her body expand as life grew inside of her. The very One Who has knit each of us together in our mothers' wombs was being knit together in the womb of a peasant girl!

I thought of the cherished time that I nursed Benjamin and my anticipation of doing the same for Joelle. My heart was moved as I considered baby Jesus receiving love and nourishment from His mother's breast, His first experiences being held and comforted in her arms. The tears continued to flow as I realized even more the sacredness of motherhood, the privilege of nurturing life, and the high value this calling has in God's eyes.

I am so grateful to my Lord and Savior, Who willingly chose such a low place of humility and vulnerability that I may be redeemed. My prayer is to have a heart like Mary's, "Behold, I am the handmaiden of the Lord; let it be done to me according to what you have said..." (Luke 1:38).

 

Help that Hurts

We have all had the experience of seeing a loved one or acquaintance in emotional pain. I believe we all know the feeling of wishing we could find the right words to say to ease their suffering. I believe many of us have felt the discomfort of encountering another’s grief up close, wanting to find some way to get relief from the awkwardness of the situation. I have been on this end of relationship many times, and I know I have been too quick to share words that seemed to only hit the ground, though my intentions were good. However, through my experiences since Benjamin’s birth of being the one in pain, I believe I have learned a bit more about what truly helps as opposed to “help that hurts.”

As I have written elsewhere, Shawn and I have been the recipients of incredible support and encouragement since we began our journey of parenting a child with special needs. We have been truly blessed through the genuine love and investment by others in our lives, and we will always be thankful. However, I now want to focus on the “help” that hasn’t been so helpful. My motive in writing this piece is not to point the finger or be critical of others, but instead to create awareness on a very sensitive issue. Where to begin….

I have realized more and more over these last three years that many people tend to hold a “rose-colored glasses” view of having a child with Down syndrome. Shawn and I have cringed inside time and time again as friends or even strangers have made comments such as, “God only gives these children to special people.” “Oh, they’re all such little angels.” “God knew you could handle it.” Do I believe that Benjamin is a gift? Absolutely—just as I believe that every child born is a gift, regardless of the circumstances. I highly value human life, and I cherish my son. However, I do not feel that children with disabilities are only given to special people who “can handle it.” All around the world, children with Down syndrome and other special needs are abandoned to orphanages and institutions. Their parents didn’t feel special and instead rejected the very life they had created. I have heard that in our nation statistically 90% or more of women who receive a pre-natal diagnosis of Down syndrome choose to abort! There is no rosy notion here but a devastating reality.

As to the sentiment that all people with Down syndrome are like angels, such comments carry a bit of a sting as well. Benjamin is a delightful little boy, and I love watching his personality emerge. However, his love or happiness as an individual is not dependent on the fact that he carries an extra chromosome. He will be shaped by relationships and life experiences just like we all are, and he will be his own person with good days and bad days, joys and sorrows. We once had a friend tell us about a grown man who had Down syndrome that she had encountered at a restaurant. He was an outgoing individual, making conversation with many people. She told us, “I thought, ‘That’s Benjamin!” I knew she meant well, but it was upsetting that my son’s personhood was being directly linked to his disability, even if it was in a flattering way. We intend to raise him to value people and to walk in love, but we will not assume that his chromosomal condition will ensure his emotional disposition!

When we’ve been told that God gave us Benjamin because He knew we could handle it, I want to laugh. We are not somehow immune to pain and disappointment, and it has only been His grace and His strength that have enabled us to walk through both. The underlying message I have felt from such comments has been, “I’m glad it’s you and not me. God knows I couldn’t handle it!” Now I realize that this attitude is not true of everyone, but I hope that I’m making the clear point that having a child with special needs should not be romanticized.

Another way we have experienced “help that hurts” has been the sense that others are reluctant to acknowledge our pain, but instead are quick to give pat answers. Sometimes we have felt that our pain is not acceptable to others; maybe it makes them uncomfortable, so they give us cheery responses that only seem to undermine what we are feeling. While the intentions may be good the effects are disheartening. One example has been the grief we have experienced over Benjamin’s developmental delays. Many times I have opened my heart to another in this matter, only to receive prompt replies such as, “But he’s doing so good!” “Oh, well he’ll get there!” “Yeah, but he’s so cute!” I’ve even heard such things as, “When he does start (fill in the blank), then you’ll be sorry.” I know that my son is doing well; no one is prouder of him than his dad and me! I know that “he’ll get there,” but it doesn’t erase the pain that he’s not “there” yet. I think he’s the cutest little boy in the world, but that doesn’t diminish my disappointments over his challenges. I have NEVER been sorry when Benjamin has reached a new milestone. Each one is an occasion for much celebration and thanksgiving. Few people truly grasp the amount of work, tears, frustration and prayer that have been invested into each one.

As I have experienced misdirected “help” over these past few years, I have realized more and more how many times I have been guilty of doing the same. My hope and prayer is that my experiences are teaching me to be more compassionate and sensitive when I encounter pain in others. I have learned that silence can sometimes be the greatest help. Those that have been willing to simply listen to me share the pain of my heart, without trying to “fix” me, have been the most comforting of all. There are often no “right words to say” when someone is hurting. Listen to me, cry with me, offer a hug, pray with me, and trust Jesus to heal my heart. He is the Great Physician. His words are the words that bring life and healing. Sometimes He may give you words to say, but be sensitive to His leading in this area. As I’ve written previously, we had two friends come to us with the gentle exhortation to set our hearts before Jesus to receive healing. They didn’t speak many words, only the words they felt God had given them to say. I also know that they prayed for us before ever releasing those words to us. As we took the advice to heart, we received a deeper measure of healing than a multitude of well-intentioned words could have ever offered to us. I think we should all seek to follow the wisdom of James 1:19 to “be quick to listen, (and) slow to speak…” This will truly help!

 

All I've Known is Holland

On July 2, 2012 I stood in our bathroom at 5:00 a.m. with heart pounding as I waited for the results to read on the pregnancy test strip. My heart nearly pounded out of my chest a moment later when the positive sign was revealed! In a state of shock I went and woke up Shawn, who was too groggy at first for the information to register. When he was able to take in what I was saying, he too was shocked and thrilled. After a year and a half of waiting, it felt surreal. We really are going to have another baby!

After rejoicing with me, Shawn drifted back to sleep, but I knew I would not be able to. Instead I went out to the living room to worship, pray, and reflect on this sudden change in our lives. I had known disappointment after disappointment while trying to conceive a second child. The desire had become so intense, it was beginning to consume me. In May the Lord gently put His finger in that very vulnerable place and asked me to lay my desire on the altar. The desire to have children is a good thing in and of itself, but I was so focused on my longing that it was distracting me from my walk with God. He desires that there be no other loves before Him because He created us for relationship with Himself, and He knows that no other love can fully satisfy our hearts. So, in His love He asked me to surrender my desire for a baby to Him, stop trying to make something happen, and just focus on knowing Him more. With a trembling heart I said “yes,” not knowing what all my yes would require but knowing that I want to live my life in the center of His will. The “yes” had to be reaffirmed every time the longing arose and sought to overtake my emotions, often multiple times a day. It was both a painful and liberating process, but in the midst of the uncertainty and tears of surrender, a new peace descended on my heart. My prayer of “Lord, open my womb,” had become “Lord, may Your will be done.”

Considering this recent journey He had taken me on, it was not on my screen that I would be getting pregnant any time soon. So when my period was late in coming and I was noticing some other unusual symptoms, I tried to not get my hopes up that this was a sign of pregnancy and took the test to more just rule out the possibility. I was shocked that so soon after I surrendered the desires of my heart to Jesus, He granted me those very desires. I feel like I am living in Psalm 37:4, “Delight yourself also in the Lord, and He shall give you the desires of your heart,” (NKJV).   

As I write this I am entering the 10th week of my pregnancy, and already this one feels different. I am more tired this time, which stands to reason as I did not have a small child to care for this first time around. The queasiness in 24/7 instead of off and on. My “baby bump” is emerging much more rapidly this time, and I’ve only gained a pound so far! There isn’t the clear sense of whether or not we’re having a boy or a girl like we had with Benjamin. Also this one just feels different; I don’t have language to describe how or why. The reality that I may finally be taking a trip to “Italy” is growing inside me more and more. Yet all I’ve known is “Holland.”

In some ways I feel like I will have to learn to be a parent all over again. The slower pace of Holland is what I’m familiar with. Every stage of Benjamin’s development has been so extended, and every new milestone has required so much work. Currently, he is 3 years and 2 months old and is still operating developmentally like a 10-12 month old. Picturing the much faster pace of Italy is both thrilling and a bit intimidating. I can only imagine Shawn’s and my wonder as our next baby seemingly effortlessly reaches milestones in his or her first year that Benjamin did not reach until his second or third year after months and months of intervention. I can picture joy in watching our next child’s development speed by as well as grief as we remember just how hard Benjamin had to work for the same things.

Though I will be required to have another c-section, my heart is thrilled at the prospect of being able to see my baby right after delivery and being able to hold and nurse my child within a few hours. I am in awe of the thought of being able to bring a healthy baby home at the time of my release from the hospital. I know that this experience is the norm, but for so long it has felt like a distant dream! I also realize that I don’t have a clear idea of what the first few months with a new born are really like. Benjamin was so weak from the holes in his heart that he slept away the majority of his first two months, one of those months being in the NICU. During his first month home he rarely woke me up to feed him; I had to wake him up to eat! While I know that every child is different and brings their own unique experience, I have a feeling that the differences for us will be even more keenly felt.

The arrival of our next child will definitely be a new adventure and one that I welcome whole-heartedly, with all the ups and downs that may accompany the journey! I am so happy to have another child to love, and I am so excited that Benjamin will have a sibling to grow up with. I look forward to watching their relationship unfold. I am eagerly anticipating Italy, and I will continue to cherish Holland!

Kiddie Park!

It was by far our best $5.00 investment of the summer! After the much needed rain cooled things down on Friday night, Shawn and I decided to follow through with what we’d been talking about doing all summer and take Benjamin on his first outing to the Kiddie Park. He LOVED it!

After purchasing tickets and walking around to see what rides were available, we took Benjamin to the small carriage ride. Shawn strapped him into the seat, and we were a little apprehensive, hoping it would hold him in place. He loves to lean over the side of his stroller to stare at the ground, and we wondered if he would do the same thing on the rides. Benjamin was amazing, though, and held himself upright the whole time, grinning and squealing as the ride circled around.

He and Daddy also took a turn in the mini tilt-a-whirl, though Shawn made sure the seat they were in didn’t spin as the ride went around. It was still pretty fast, though, and Benjamin wasn’t quite sure what to make of the new sensation, but he did very well.

Then it was time to head for the train. This was his favorite! We found a bench and sat him between us. He laughed and clapped and squealed the whole way. A friendly passenger ahead of us noticed our poor attempts at trying to snap a family picture and offered to take one for us. Benjamin cried when the train ride was over (as he did with almost every other ride as well!) “Why did we have to stop?” I could hear him thinking.

After the train we purchased a few more tickets and went for a family ride on the carousel. We chose a bench to sit in, and Benjamin had a great time watching the scenery go by. I was sure to fix my gaze on Benjamin so as to not see the scenery go by, but I still felt queasy!

Our next stop was the little cars. Shawn found one with a high back to it and secured the lap belt over Benjamin, but it fastened so low, we were concerned again that he may flip himself out. Once again he exceeded our expectations and held himself upright for the whole ride, delighting in it the entire time!

We let him ride the carriage ride one more time and finished up the evening with another train ride. He was getting tired by this point, and I was too. I had wondered how I would do at the Kiddie Park with all the fatigue and queasiness I’ve been experiencing due to early pregnancy symptoms, but I was surprised there as well. It was actually wonderfully refreshing to take that little family outing, and my heart felt so full from the joy of watching my son’s pleasure. I look forward to future visits!

You Heard What I Said! (Part Two)

In the fall of 2011, we had a bad string of hearing aid molds. One pair never fit well, and Benjamin wouldn’t keep them in, so we had them quickly replaced. The next pair wasn’t much better. During the intervals of waiting for the new molds to come in, there wasn’t much point in trying to keep his hearing aids in much, because he was so quick to pull them out. I had hoped that a new set would be in before we left for MN to spend Christmas with family, but they didn’t make it back on time, so we left for our trip and didn’t even bother packing the hearing aids.

When we finally received his new molds in January, we still seemed to be having problems. Benjamin had always enjoyed wearing his hearing aids; why was he suddenly fighting them so much? He would cry every time I tried to put them in.  By this point it had been a few months since he had worn them consistently, and I wrestled with feelings of guilt over this fact. However, during those few months Shawn and I were noticing a new level of responsiveness in Benjamin even without the hearing aids. It was subtle things: if he was sitting in his high chair and the coffee pot started to brew across the kitchen he would turn around and look for the source of the sound. He would respond to our voices spoken softly, even if he wasn’t looking at us when we spoke. He was turning towards various noises more and more in general. Our hopes began to rise.

I brought these things to the attention of our audiologist and requested to have some more hearing tests done. She wanted to stick with behavioral hearing tests at first, but we found out during one of the first attempts that Benjamin had a build-up of ear wax in his ear. She recommended we have it cleaned out. At the end of January 2012 we had an appointment with his ENT in which he was able to extract some large pieces of wax from inside Benjamin’s ears. One of his ear tubes had already fallen out previously, and the remaining tube came out with a glob of wax. However, since Benjamin has not struggled much with ear infections, the ENT didn’t feel it was necessary to replace the tubes again.

Our audiologist works at multiple sites, and she happened to be at our ENT’s office that day, so she performed a behavioral hearing test on Benjamin with his freshly cleaned ears. She was surprised and excited by the results. He was responding in the low normal range, without his hearing aids. The next step now was to schedule another ABR.

On March 1, Shawn and I drove to The Scholl Center for what ended up being round one of Benjamin’s ABR testing. Since they had decided not to use sedation for his testing, we had to try to plan the appointment close to his nap time and hope that he would sleep long enough to test his ears. We were taken back to a little room decorated like a nursery with the lights dimmed. I held Benjamin on my lap in an oversized recliner as the young woman who would be performing the test began prepping our son for the procedure. She was very kind, interning for what was the last semester of her Ph.D. program. Benjamin, however, did not appreciate her at all and screamed and twisted around in my arms as she hooked up the electrodes to his head and  inserted the microphone in his ear. Now the challenge was to get him to sleep. She wisely stepped out of the room for a while, so I could sooth him. Shawn sat across the room from me, trying to stay awake himself as I sang “Twinkle, Twinkle Little Star” for what felt like 50 times. My angry toddler finally fell asleep in my arms. The test could begin. As mentioned previously, each ear required an hour for testing, so we knew it wasn’t likely that Benjamin would stay asleep long enough to test both ears. I didn’t think my arms could hold out that long either. As my son slept and the computer monitor charted what looked to me like nothing more than squiggly lines, we chatted some with the young audiologist, with whom we found we had some mutual acquaintances, or we sat in silence. My arms were aching and my stomach was growling before it was all said and done.

Shortly after the test on Benjamin’s right ear was completed he began to stir, and he was not happy to wake up to the same surroundings he’d fallen asleep in. We scheduled a second appointment for two weeks later to test his left ear. The audiologist was a bit hesitant to talk to us about her findings from the test. We had told her our son’s story and were honest about our hopes that God had healed him. We knew from our conversation that she was a Christian as well, and we knew she didn’t want us to be disappointed. She said that she really wanted to run the test results by her supervisor for a second opinion. However, she did admit that from what she was seeing so far, she could not find any indication of hearing loss in his right ear! We were thrilled!

Since we were already in Tulsa, and Shawn had taken the day off of work, we decided to take some time to enjoy ourselves while we were there. We headed to one of our favorite restaurants, Panera Bread, for a celebration lunch. Benjamin loves their macaroni and cheese! After enjoying a delicious meal, topped off with a steaming cup of hazelnut coffee (Benjamin drank juice!), we headed for La Fortune Park. It was a perfect day to be outdoors, and the park with its lovely walking trail, duck pond, and playground equipment, was the perfect place to be. We enjoyed the sunshine, the scenery and some quality family time as we rejoiced in our son’s good report!

Two weeks later we found ourselves back at The Scholl Center to test Benjamin’s left ear. The young audiologist quickly confirmed the results of the previous test: her supervisor had looked everything over and agreed that it looked perfectly normal! We could hardly wait for what this day’s test would reveal, especially since his left ear was the one with the greater level of hearing loss. As anticipated, Benjamin put up quite a fight again before finally falling asleep in my arms, but he eventually gave up, and the hour long testing began. The audiologist was cautious again to give us a concrete answer without running the results by her supervisor, but she did say that from what she could tell, his left ear was showing either normal hearing or only a very mild loss. Either one was a huge improvement from the moderate loss he had previously been diagnosed with! We left rejoicing in God’s goodness and power demonstrated in Benjamin’s life.

Within the next week, she called us to confirm that report: normal hearing in both ears! There was no concrete explanation for it, either. Over the phone she admitted to me what we already knew to be true, “It could be a miracle.” An excerpt from the official report reads as follows:

History: Parents have noticed that Benjamin seems to be responding better at home while not wearing his hearing aids. A diagnostic ABR…from 5/21/2010 showed a moderately sloping, most likely sensorineural, hearing loss in the left ear and a mildly sloping, most likely sensorineural, hearing loss in the right ear.

Impression: Tympanometry was consistent with normal middle ear function bilaterally. Diagnostic ABR results were consistent with normal hearing sensitivity in the left ear. ABR results from 3/1/2012 were consistent with normal hearing sensitivity in the right ear.

Recommendations: 1) Discontinue bilateral hearing aid use. 2) Seek ear specific behavioral thresholds to confirm ABR results. 3) Continue speech-language therapy.

Since receiving confirmation of this miracle in Benjamin’s hearing, we have shared his testimony with many people. The responses have been mixed. Some have quickly rejoiced with us, believing that our God is a miracle-working God. Others, however, have been skeptical. Some have wondered if Benjamin was mis-diagnosed with hearing loss to begin with. I can assure you, he had hearing loss, and he no longer does. A friend of ours who is a licensed speech therapist assured us that ABR test results don’t lie. Testing aside, Benjamin’s behavior over the past two years related to his hearing is proof enough. A few people have wondered if his ear canals have grown big enough to allow him to hear better. I want to laugh at this one. His ear canals are still so tiny his pediatrician has a difficult time seeing anything when he examines him. When Benjamin was first diagnosed, we were never given any hope that his hearing could improve as he grew. Quite the contrary, we were told it may deteriorate.

Jesus said, “Assuredly, I say to you, whoever does not receive the kingdom of God as a little child  will by no means enter it,” (Mark 10:15). Jesus also taught His followers to pray, “Your kingdom come. Your will be done on earth as it is in heaven,” (Matthew 6:10). There is no hearing loss in heaven. We prayed and other prayed that what was true in heaven would be done on earth in our son’s ears. And God heard our prayers. I don’t know when or how He healed Benjamin’s ears, I just know that He did it! You heard what I said!

You Heard What I Said! (Part One)

On the morning of May 21, 2010 my mom and I drove Benjamin to the Diagnostic Neurophysiology building in Tulsa for his scheduled sedated ABR (Auditory Brainstem Response) procedure. (That was all a mouthful, I know!) His first birthday was the very next day, and I could think of a hundred things I would rather be doing. Our son’s first year was full of so many hospital stays, doctor visits and medical procedures, however, that I had pretty much come to accept them as a normal part of life. And whether the results were good or bad, I was hoping that we would finally get some concrete answers that day about Benjamin’s hearing.

During his recent bout with infantile spasm seizures, he had a routine hearing test with his audiologist, a recommended intervention for children with Down syndrome, as around 50-60% of this population suffer from some degree of hearing loss. There are three possible types of hearing loss:

1.     Conductive—referring to a build of fluid in the middle ears that creates interference with the conduction of sound vibrations in the middle ear

2.     Sensorineural— referring to a damage to bones and/or nerves in the inner ear that affects the transfer of sound from the inner ear to the auditory nerve

3.     Mixed—referring to the presence of both types of hearing loss

One common characterstic for children with Down syndrome is small ear canals, which can often increase the problem of fluid retention in the inner ear and lead to chronic ear infections, which in turn can cause conductive hearing loss. The good news about this type of loss is that it is not permanent. The surgical insertion of ear tubes to allow the inner ear to drain is often all it takes to return hearing to normal levels. Sensorineural hearing loss, on the other hand, is not curable. In young children with this type of hearing loss, the damage to the inner ear is often present at birth. It is the most common type of permanent hearing loss, and hearing aids are the most common solution to help improve hearing ability.

I am not wanting to sound like I’m writing out of a textbook, but I believe some basic information about the types of hearing loss will enable me to share our story with more credibility and meaning. When Benjamin had his hearing test in February 2010, the results were not good. He was not responsive to the level the audiologist would like to see. Behavioral hearing tests, however, are difficult with small children and leave a definite margin for error, but they can assist in determining if there may be a problem. We tested again in March, but the results were not improved. In daily life Benjamin was not as responsive as we would like either. The seizures had definitely played a part in this, but we couldn’t assume they were the only reason for the delays.  The audiologist recommended us to a Ear Nose and Throat specialist for the purpose of having ear tubes inserted. The hope was that Benjamin’s potential hearing loss was conductive, and we would see an improvement after having the simple surgery.

His surgery was scheduled for the end of March. It was a simple out-patient procedure, but we still dreaded our son having to be sedated again for another operation. Hospital settings had become all too familiar. Our ENT was very helpful and kind, but he told us before surgery that Benjamin’s ear canals were some of the smallest he had ever seen, even in children with Down syndrome. He could not guarantee that he would be successful in inserting the ear tubes. Thankfully, though, the surgery was a success, but he told us that he saw very little fluid in our son’s ears. We still hoped we would begin to see improvement in Benjamin’s responsiveness, but this was not the case.

For this reason, I found myself in Tulsa the day before my son’s birthday for the ABR test. In this particular test, the child must be asleep for the entire procedure. Benjamin was given oral medication to make him drowsy, and once he was asleep, the audiologist prepped him for the procedure while my mom and I waited in a small office across the hall. She told us the test itself would take around an hour for each ear, so we settled in for the wait. In an ABR, small electrodes are connected all over the child’s scalp and a small microphone in placed in the ear canal. A computer then charts the brain’s responses to sounds sent directly into the ear. It is the most accurate hearing test for small children.

I don’t remember how long we waited in that little room, but I do remember that the time seemed to drag by. My mom had flown in for a visit earlier in the week, and I was grateful for her company. It was an early morning test, and we were both sleepy. I was anxious as well, wanting answers, but afraid of what the answers might be. When the ABR was finally finished, the audiologist came to talk with us. To my dismay, she gave the report I didn’t want to hear. According to her test results, Benjamin had sensorineural hearing loss, mild in his right ear and moderate in his left. I tried to process what she was saying and asked if there was any chance his hearing would ever improve. She gently explained that his loss was permanent, and there was a possibility it may get worse over time. I felt numb. She recommended that we have him fitted for hearing aids soon, an intervention he would need for life. An excerpt of the official report reads as follows:

IMPRESSION: The above test battery is consistent with a moderately sloping most likely sensori-neural hearing loss in the left ear, and a mildly sloping most likely SN loss in the right. (Bone conduction thresholds abnormal).

RECOMMEND:

1.     Medical management of blocked vs extruded PE tubes au.

2.     Bilateral hearing aid evaluation.

3.     Close monitoring of hearing levels due to the possibility of progressive hearing loss.

My heart sank. Did this have to be the hallmark for the end of Benjamin’s first year? Hadn’t he been through more than enough already? Our little boy had experienced more medically in one year’s time than some people do over a life time. How much more would we have to deal with? For Shawn and me it was “one more thing” to throw on top of the pile.

The following day we celebrated our son’s first birthday with family and friends. Overall, the party went well, and we were all able to enjoy ourselves. I had some anxiety leading up to the party, however. I wanted everything to be perfect, and little details were blown up big in my emotions, making me feel tense and irritable. Shawn was encouraging me to relax and just enjoy myself, but I was struggling at first to do so. Inwardly I was chastising myself for behaving this way. Today was supposed to be a day of celebration, and I wanted to enjoy it. I soon realized the root of my intensity. During Benjamin’s first year, I felt so out of control of so many things. I felt so helpless to help my son on numerous occasions. His first birthday party felt to me like something I finally had a measure of control over; something special I could do for him, and I wanted it to be perfect since so many things had been less than perfect since his birth. Recognizing where I was helped me to relax some and regain perspective. The important thing that day was that we enjoy Benjamin and enjoy our loved ones celebrating with us. The other details were secondary.

Within a few weeks Benjamin was fitted for hearing aids, and they arrived less than two weeks later. On June 17,  I drove my small son to Tulsa again, this time to The Scholl Center for Communication Disorders, to pick them up. I found it strangely ironic that this day marked the one year anniversary of Benjamin’s homecoming from the NICU. Who knew how much one year could hold! The audiologists at The Scholl Center were very kind and demonstrated to me how to insert and care for the new hearing aids. I was thankful that everything appeared to be quite simple. Benjamin didn’t put up the fuss I thought he would when they were first put in his ears. We were given a set of small fabric casings that slipped over each hearing aid and were attached to a string that could be clipped to the back of Benjamin’s shirt. This would help to ensure that they wouldn’t be lost if they fell out (or he pulled them out). I was also advised that a small strip of tupee tape on the back of each hearing aid would help hold it in place against my son’s head without any discomfort to him. In the weeks and months that followed, we discovered that we preferred to use the tape for day to day life at home and the casings for outings. Benjamin had two hearing tests that day (and/or a few weeks later at a follow up visit—my memory escapes me), one with and one without the hearing aids. With the hearing aids in place, his hearing tested close to normal levels. Shawn and I were so encouraged!

The drive home from Tulsa that day was a new experience. It was close to rush hour , so there was extra sound and activity on the highway. Benjamin screamed the whole way through Tulsa. I realized he’d never heard the amplified sounds of heavy traffic before, and the new sensation scared him. I was sad for him but excited as well!

Over the next few weeks, Benjamin adjusted to the hearing aids better than we could have imagined. It was obvious that they were helping him, and he liked having them in. He was still a long way from crawling at this point but was rolling all over the place, which did create a challenge for keeping the aids in place. However, it was rare that he actually pulled them out himself. If the molds weren’t fitting quite right, and he was getting a lot of feedback he’d take them out; otherwise they seemed to become a part of him. Shawn and I noticed a marked difference in his responsiveness as well, as did his therapist. Overall he was more alert and a happier little guy. We were so thankful!

Since children grow so quickly, Benjamin had to have new molds cast about every four months. He never did appreciate this procedure. After having his inner ears checked by the audiologist, he would have to be held down while a tiny piece of cotton with a string attached to it was pressed down inside his ear canal to protect his inner ear. Then the audiologist would fill the opening of his ear with a gooey paste that reminded me remarkably of Laffy Taffy, though I’m sure it didn’t taste the same! It had to set for a minute or two to stiffen, and when it was pulled out, it gave the exact replication of Benjamin’s ear. These molds were then sent to a lab where the actual hearing aid molds would be cast. I was able to choose from a variety of colors for the ear molds, but I always stuck with some shade of blue, though one time we did a blue and white swirl. I thought the blue brought out Benjamin’s eyes. For the hearing aids themselves, I had picked a neutral color that was the mix between a tan and a light brown. They would last for at least a few years. We had a sheet of hearing aid stickers to decorate them with, and I usually changed Benjamin’s stickers whenever he received new ear molds. I always wondered what his preferences would be for colors and stickers when he was old enough to choose himself.

The hearing aids quickly became a normal part of life, though Shawn and I never stopped asking God for a miracle in our son’s ears. We had already witnessed Benjamin’s healing from seizures, and we knew we had a miracle baby! Whenever there was the opportunity for others to pray for his hearing, we eagerly sought it out. If we went to hear a guest minister speak, we took Benjamin up to receive prayer. When we shared his amazing testimony of healing from seizures at the One Thing Conference at the International House of Prayer in Kansas City, the whole audience joined in praying for him. He was prayed for at our own prayer gatherings on a consistent basis. And, of course, we prayed over him in our home all the time. However, Benjamin couldn’t tell us if anything was happening to him, and so we just trusted that time would tell... (to be continued). 

3 Years and Counting...

On May 22, 2009 at 5:39 a.m. Benjamin Lee Hemminger came into the world. His newborn cries cut through the cold air, and my heart leaped inside me! Little did I know that it would be four long hours before I would be able to see my baby, nine tormenting days until I would be able to hold him in my arms, and four weeks that felt like a short life-time before my son would come home.

On May 22, 2012 at around 6:20 a.m. Benjamin's toddler cries came from his bedroom, announcing that he was indeed awake and ready to begin his day! He smiled big as I walked in the room. "Happy Birthday, Benjamin!" I exclaimed. "Are you three today?!" I sang him happy birthday as I changed his diaper and we headed to the kitchen for breakfast. The next few hours were filled with toys, movies, songs, clapping, kisses and cuddles.

After his mid-morning snack, we loaded up in the car to head to Sooner Park. He was more than excited to go for a walk in his stroller out in the beautiful sunshine. He squealed with delight when we stopped by the creek to watch the water. He smiled big when we sat down in the grass to roll a ball back and forth and blow bubbles. He was delighted to swing in the baby swings and watch his shadow go by underneath. It was a good birthday morning!

Now he's had his lunch and is taking his afternoon nap. Tonight I will fix one of his favorite meals for supper--pancakes! We will spend some quality time as a family. As I write, I am thinking back over three years that have flown by so quickly, yet have felt like their own lifetime as well. It's hard to remember life before Benjamin. Three years ago today, though, I couldn't imagine a day like this one, yet here we are with many more days to look forward to by God's grace. In spite of the pain and difficulties we have experienced, these last three years have been the richest and most joy-filled of my life. My marriage is stronger than ever before, my walk with God has grown so much, and by His grace I am a stronger person. I have a beautiful child to love and cherish. I so delight in being a Mommy!

It's been three years and counting...counting on many more years to come, counting on many more experiences through which to learn and grow, counting on love that overflows, counting on Jesus' goodness to see us through each new day. That's reason to celebrate!

Benjamin's first day

First Birthday

Second Birthday

Third Birthday



Three Years Ago Today

Three years ago today, I sat on our living room couch feeling the discomforts of 3rd trimester pregnancy, and watched the heavy downpour through the front window. Three years ago today I considered cancelling the ultra-sound appointment with the specialist for that morning, which would require an hour long drive one way. I was confident it would be routine, and she'd tell us our baby was growing fine and send us on our way. Three years ago today I prayed a two-second prayer, asking God to stop the rain if I should go to the appointment. I was surprised and a bit disappointed when the rain stopped minutes later. I was so tired.

Three years ago today, Shawn and I drove to Tulsa under clear skies for what was to be the last of three ultra-sounds. Three years ago today our hearts sank as the specialist told us my amniotic fluid was measuring low, and she wanted to see us back weekly until the baby was born. How could we keep up with this pace when I already had weekly appointments with my OB doctor 45 minutes away?

Three years ago today, I convinced myself that low amniotic fluid wasn't too big of a deal, and though my baby may come a week or two earlier than expected, he would come healthy and whole. Three years ago today I daydreamed about holding my perfect newborn in my arms. Three years ago today, I had no idea of the nature and intensity of the journey we were about to begin in two weeks time. Even if I could have known, I probably wouldn't have believed it. Three years ago today, I still had it figured out what things would look like with our new baby (or at least I thought I did).

Now it is today, and I am reflecting back over three years that have been very different than I ever thought possible. And yet, there are still many things that are not so different. This morning I have experienced many of the typical activities for a stay-at-home mom with a young child (except for maybe Benjamin's hour in his Super Stand!) There have been dirty diapers to change and messy mouths to clean. There have been noisy toys and a busy boy. There have been kisses and cuddles, songs and giggles. Most importantly, there has been a lot of love.

Just as I could never have been prepared for how much trial we would face after Benjamin's birth, I don't think I could have been prepared either for the depth of love I would feel for my child. Oh, I knew I would love him crazy, but as any parent will tell you, I didn't really know until I got to meet him. What will the next three years hold? I have no idea, but I do know they will be full of love. This time, though, I'm going to work hard at not trying to figure it out!

This picture was taken less than a week later at our childbirth class.

Almost three years old!

Ache

How is it possible to so deeply miss someone you have yet to meet? This is an ache with which I have become very familiar. I experienced it with many tears and prayers for two years before finally conceiving Benjamin. It has been my companion once again for these past 16 months. Today my hopes of being pregnant with a second child before turning 30 were dashed. At least this time I was wise enough to wait another day before putting myself  through the heightened disappointment of another false pregnancy test. It still sits untouched in a drawer waiting for a more opportune time.

A few months ago I was driving and praying, silent tears streaming down my cheeks as I told the Lord, "I ache for my future children!" I felt Him whisper back, "I ache for Mine too." His words caught me off-guard, and my prayer that day shifted from seeking the fulfillment of my desires to seeking the fulfillment of His. If I can feel such a deep pain of longing for my children yet to be born, how much does His heart ache for His children who have yet to be born again? Father, fill me with love for the children You are longing for, and use my life to help "birth" them into the Kingdom. Sustain my heart as I wait for the blessing of my own future babies. Thank You that they already exist in Your heart.

Next Time

I pushed my sleepy, fussy son in his stroller to the check-out counter at the local consignment shop. My plan for him to fall asleep in the car and snooze while I shopped didn't go as well as I had hoped. The sleeping in the car part was perfect, but the transfer from car seat to stroller didn't go so well. Still, I was pleased with my bargain finds: a brand new ceramic picture frame that reads "Birthday Boy" and an adorable cake topper that looks like a colorful, multi-layered cake with candles. (Benjamin's 3rd birthday is just around the corner)! They both still had their original store tags. In the store I would have paid $36.00 before tax; at the consignment shop I paid a total of $5.00! That's my kind of shopping!

Any way, as we reached the counter, the lady working the register exclaimed to the other lady assisting behind the counter, "Oh look! He's a Down's baby!" She then proceeded to tell me about a little boy she knows who has Down syndrome, who we happen to know as well. Both ladies commented on how cute Benjamin is and were sympathetic to his sleepy state. I smiled and chatted with them a bit, knowing that they meant no disrespect, but I was cringing on the inside. I have never liked the term "Down's baby" or "Down's child." I feel like this type of language slaps a label on my son that places his disability at the forefront of determining his identity.

After we arrived home I thought about how I would like to handle a similar situation next time. Do I remain silent about it, knowing that the person had good intentions and was not trying to be rude, or do I find a way to gently confront and build awareness that will hopefully help them to be more sensitive to others in the future? Maybe next time I can politely reply with something like, "Yes my son happens to have Down syndrome. His name is Benjamin." I want people to see my son, not just a disability.

Esther Call 2012

On Good Friday I drove to Dallas, TX with some other ladies from our church to attend the Esther Call 2012. Women from all over the nation were called to come together to fast and pray to see the ending of abortion in America. The event lasted over 9 hours as hundreds of youth and women, young and old lifted our voices as one and cried out for mercy in our nation. Countless more were joining in around the world through the live web stream and God TV. It was a powerful time! For 21 days prior to the event, a group called Back to Life held a walk in which 39 women, representing 39 years of legalized abortion in America, marched from Houston to Dallas in what has become known as the "women's trail of tears." They started from the largest Planned Parenthood facility in Houston and marched to Dallas, where Roe vs. Wade first came into effect. Many of these women were post-abortive and have lived with the pain and regret of the child/children they lost. Some were scheduled to be aborted, but their mothers chose to give them life instead. Some have had family members lost to abortion, and some just have a burning passion to see justice for the unborn. These women shared their moving stories and were honored at the Esther Call.

The Esther Call was given its name in remembrance of Esther of the Bible. An orphaned Jewish girl, she was raised by her godly uncle Mordecai in ancient Persia, where the Jewish people had been captives for several decades and had only recently been given the freedom to return to their homeland. By the Lord's favor, Esther rose from obscurity to become queen over a nation that was not even her own. When a death decree was issued over the Jewish people living in Persia, Esther was in a position of influence to stand in the gap and fight for their liberty. She fasted and prayed, petitioning the King of Heaven before risking her own life to go unbidden before the king of Persia to intercede for the lives of her people. God's favor rested on her, and she ultimately saw deliverance for the Jews.

They gave the call for modern day "Esthers" to rise and stand in the place of influence that has been given to us by the blood of Jesus. We have access to the courts of heaven to fast and pray and petition our King, Who will grant us favor. We are also called to be a voice in our nation and to stand in the gap for an entire generation that is being silently murdered on a daily basis in the name of "convenience" and "women's rights." Our true "right" as women is to be life-givers, and this is more than just having children. We are given the responsibility and the privilege of calling forth the destinies in the generation coming up behind us. My heart breaks to think of the estimated 54 million destinies that have been lost since Roe vs. Wade, and the numbers continue to mount.

During the assembly we had intense times of worship and intercession, either corporate or in small groups. There was both personal and corporate repentance. There was an emphasis on healing the hearts of women by the grace and forgiveness of Jesus Christ and a cry to see the restoration of true identity and womanhood that has been so attacked by the culture we live in. We petitioned the courts of heaven to bring an ending to the atrocity of abortion that would usher in revival in our nation. As one voice we declared that "Children are a blessing from the Lord!" And that is true of every child!

It is overwhelming to me that, according to statistics, over 90% of women would have chosen to abort my son, had they received a prenatal diagnosis of Down syndrome. Over 90%??!!! Benjamin's life is such a gift. He was in the heart of Jesus before the creation of the world, and he has a unique calling and destiny intended for him alone. He is able to express the heart of God in a way that no one else can, and that is true of each and every person ever born. Do we really know who we are and the significance we carry? Today I am thankful for life, even as I grieve for the lives that were never given a chance. Today I am thankful for the blessing of my child and the privilege of motherhood. Today I am thankful to be a woman loved by the King.

Mr. Mobile

It felt like one of the longest waits of my life. I remember when Shawn’s dad D.J. came to visit shortly after we brought Benjamin home from the hospital the first time. He was just barely two months old. His heart surgery was only days away. Before reluctantly leaving to head back to MN, D.J. said “He’ll probably be crawling around when we see you at Christmas.” Knowing that our little son would only be 7 months old by that time and that he would experience developmental delays, I responded, “Well, maybe not this Christmas, but definitely by next Christmas!” After all, Benjamin would be 19 months old by that point. I couldn’t fathom him seeing his first birthday before he was crawling around. However, before we knew it his first birthday had arrived, and not only was Benjamin not crawling yet, he wasn’t even able to sit up without moderate assistance. We purchased him a Bumbo seat and used it as long as we could, but he was really too big for it in the first place. It’s not designed for a one year old. One year olds are typically long past the need for that type of intervention and are instead toddling around.

 I remember our first few visits to the Down Syndrome Association of Tulsa meetings during Benjamin’s first year. We saw a couple of two year olds who were up and walking around. I remember thinking, “That’s not so bad. At least we have a better idea of when he should meet his milestones.” However, we were not anticipating all of the medical complications Benjamin would face in his first few years. By the time we had reached our son’s first birthday he had faced: premature birth, extended respiratory distress, jaundice, kidney failure (all those just within the first week of life), open heart surgery, double hernia surgery, infantile spasm seizures, an MRI of his brain, ear tube surgery, and the diagnosis of permanent mild/moderate hearing loss the literal day before his birthday. (Nearly two years later, though, God would demonstrate to us giving us great joy that nothing is permanent unless He says so!) In the following year and three months he would also undergo two eye surgeries and a short stint with glasses to help correct his eyes that had been crossing horribly. His Down syndrome aside, all of these complications resulted in significant developmental delays for our son, especially the seizures. We are so thankful that Jesus healed him of these, as in time they could have caused permanent brain damage and even more extensive delays. We are still praying for the restoration of what was lost for him during those few months.

On top of these things Benjamin was born with very low muscle tone, and he was born very big. Low muscle tone is a common trait associated with Down syndrome. We have been told by more than one therapist that Benjamin’s muscle tone is on the low end of low. Upon feeling his legs for the first time, one therapist remarked, “You want to make sure we know that you have Down syndrome!” I feel like I should interject a story here with this in mind: When Benjamin was in the hospital following his open-heart surgery, Shawn and I visited a church where we had previously attended some weekend conferences. It was our first time to attend a regular Sunday morning services. As a gesture of love and welcome, first-time visitors are invited to go to a separate room at the back of the church after the service in order to receive personal prayer ministry. Shawn and I were desperate for encouragement. At one point while the ladies assigned to us prayed, one of them kept hearing the phrase “strong trunk” run through her mind. She had no idea what it meant. We knew exactly what it meant! We had already been told by medical professionals that it would be critical for Benjamin to develop good trunk support because most of the body’s movement is dependent on its mid-section. We have held on to that word for a long time!

Any way, back to his size. Benjamin weighed 7 lbs, 6 oz when he was born, in contrast to an average birth weight of 5 lbs for a full-term infant with Down syndrome. Ever since than he has  been at the very top of the Down syndrome growth charts or above them! While his bigger size may have benefited him in some ways as a new born, his size combined with his low muscle tone it has created another hindrance for mobility.

When Benjamin was 14 months old, he was finally able to maintain a sitting position by himself. We were thrilled! However, he was not able to get himself in and out of this position, and he was so used to being dependent on us for most things, that he wouldn’t even reach for a toy that was placed a short distance away from him. He was able to play with many of his toys more effectively, but his personal independence was still very limited. Shawn and I worked at trying to help him crawl, but it felt like he fought us every step of the way. Benjamin was never really a fan of tummy time, and that’s a nice was of saying it! He was primarily confined to his back for his first three months of life because of his medical conditions, and by that point he wanted nothing to do with being on his stomach. We tried positioning him to bear down weight on his hands and wrists, but he would just bend his elbows, collapse on the floor and fill the room with his cries of protest. Trying to position his on his knees created very similar results.

One day I saw an on-line video of a mother using a string of Christmas lights to motivate her son with Down syndrome to crawl. So, we pulled out the Christmas lights. Benjamin was very intrigued by them, but he did not appreciate the process that would follow. I would kneel on the floor and keep them just out of his reach while Shawn would bend one of Benjamin’s knees and then the other, helping him push off Shawn’s leg with his little foot to propel him forward inch by inch on his belly. Sometimes the lights were enough of a distraction to make it a few feet. It didn’t take long, though,  for Benjamin to have our little scheme figured out, and he wanted nothing to do with it!

Before we knew it, Benjamin’s second Christmas had come and gone, and there was still no indication that we would be crawling any time soon. I cried many tears over this one. Some days the grief and anger would rise up so strong. Why did my son have to have so much stacked against him? Why did this all have to be so hard for him?  He didn’t look like an infant, but developmentally he was still so much of an infant. It felt like I was getting asked questions all the time of “Is he crawling yet?” (There was one old lady at church who literally asked this almost every week). “When is he supposed to crawl?” I felt so helpless at this point, and people’s questions of concern only seemed to fuel my frustration. At the same time I was being faced with the reality that babies who had been conceived during my son’s first year were up and crawling around, even pulling up to stand, while my child was still just rolling around on the floor. I tried to step back from time to time and re-gain perspective, “He will crawl one day,” I would tell myself. “He will not only crawl, but he will walk and talk and play. This is only a season.” Oh, but how long would this season last!

Shortly before Benjamin’s second birthday, he started receiving additional physical therapy at our local hospital. We have been blessed with a therapist whose has extensive experience and who’s job is not just her “job” but her life’s passion. A few weeks after his birthday, Benjamin finally made the breakthrough of being able to get in and out of a sitting position, and a whole new world of freedom and independence opened up to him. It was thrilling in a very bittersweet way. When I had expected a toddling toddler, I had a very big boy pushing with all his might to get himself upright, but I was so proud of him! Soon he was doing it so naturally, it was hard to imagine the months of struggle that had preceded this new milestone. I continued to pray as I had for the last year and a half that my son would soon learn to crawl.

By this point Benjamin had also started pushing up some on his hands and arms, but he didn’t know how to get his knees under him. He was becoming more tolerant of having assistance in this area as we practiced holding him on hands and knees or placing him in a tall kneeling position up against low furniture with a favorite toy as motivation. We could tell he was gaining strength, and we were so encouraged! Overall he was a happier boy, and his personality was emerging more and more.

Then one typical morning, (July 18, 2011 to be exact) Shawn and I were sitting in the living room sipping coffee and reading our Bibles as Benjamin played on the floor. Suddenly, using his arms and one leg, Benjamin started moving himself forward on his belly to reach a toy that he couldn’t get to otherwise. At first we could hardly believe what we were seeing! Our son was FINALLY using a form of crawling! It was so amazing yet so surreal. We had waited and waited and waited, and it was finally starting to happen! In the days, weeks, and months that followed, he became faster and more proficient at his little army crawl. He was a different kid! His fussyness began to subside bit by bit as he took more self-initiative and embraced his new independence. It was so exciting to see! We continued to work on getting him up on hands and knees and holding him at his hip bones to help him rock back and forth. It became one of his favorite games. I would say, “Hey, Benjamin, let’s rock!” He would start to get up onto hands and knees and rock back and forth with my assistance (which he started needing less and less) as I would chant, “Rock, rock, rock! Rock, rock, rock! Rockin’ baby Benjamin. Rock, rock, rock!” He loved it!  

By his third Christmas, he was started to take a few paces here and there with a traditional hands and knees crawl before reverting back to his stomach. He also started pushing up on his hands and feet into a bear crawl position. He loved and still loves to hold his head upside down and look between his legs. It’s adorable! Since January, he has been traditional crawling everywhere, and he is fast! He is much braver than when he first started crawling, and he loves to explore the whole house. It’s difficult to keep him contained in one room for very long. He’s got places to go and things to get into! As with all of his previous developmental breakthroughs, Benjamin is crawling so naturally it’s a wonder that the wait was so long and felt so hard. There’s not a day that goes by that my heart is not warmed at seeing my son crawl around, even when I wish he’d sit still just for a little while!

During the months and months of waiting, some people would try to make me feel better by saying, “Oh, just you wait. When he does start crawling you’ll be sorry.” Those comments never made me feel better. I would usually respond, “No, I am more than ready for him to crawl. I will celebrate when he crawls, even if it means more work.” There has never been the fraction of a second that I’ve felt sorry that my son is crawling. Yes, I have had to be on my toes more, but it is worth every moment! The unavoidable “inconveniences” of a busy baby is as nothing compared to the pain of his extended delays.

Benjamin has just recently started pulling up to stand at furniture. The familiar emotions of longing for my son to crawl have transferred to a longing to see him walk. Benjamin’s third birthday is just around the corner. He is currently at least three feet tall and weighs over 30 pounds. While his crawling has saved me from having to carry him everywhere, I still have to carry him a lot. I am a tired mama! At the first baby shower we had for Benjamin, we received two small picture frames, one that reads “First Smile” and the other that reads “First Step.” They are both on display in his room, one with a sweet picture of Benjamin smiling at his daddy and the other sitting empty, waiting for the day it can be filled.  I remind myself that, just like the crawling and like so many other milestones that we have worked and worked for, Benjamin will walk, and I believe that he will walk well in time. As with the crawling, the wait feels long and hard, but it’s encouraging to know that it’s only temporary. Keep moving forward, Benjamin! Mommy and Daddy (and many others) are cheering you the whole way!