Monday, April 2, 2012

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!

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