Today, I'm Tired

Today, I'm tired. I'm tired of strapping my son into his Super Stand to hold him in an upright position, especially when I think of all of the children one year old and younger who are both standing and walking, unassisted. Today I'm tired of carrying my son around so much. My arms and back ache from his 30 lbs of mostly dead weight (due to low muscle tone) and his 3 foot frame. I just want to hold his hand and let him walk by my side. Today I'm tired of hearing only gibberish from my son's mouth, when I long to hear even the simple word "Mama." I'm tired of being so limited in my communication with him. Today, I'm tired of the current limits of his play and fine motor skills. An attempt to help him color with crayons today was loudly protested. He wanted nothing to do with it. I always dreamed of the pictures my toddler would color for me that could be proudly displayed on the refridgerator. Today I'm tired of the limits in our interactive play. There is no make-believe, no mimicking what Mommy and Daddy do. When I was Benjamin's age, I loved to play pretend games. I loved to do the things the grown-ups did. I don't even know if my son has the cognitive capacity yet for creative play. When will it come? Today I'm tired of having to plan our weekly schedule around physical therapy appointments and doctor visits. Today I'm tired of feeling so isolated from the other young families we know who have "typically-developing" children. This is not to say that people are not kind and understanding; they absolutely are, but they still can't really understand what it's like. I feel like there is a gap between us that cannot be crossed. Today I'm surprised by the fresh wave of grief that hit me so unexpectedly. I wasn't prepared for the tears that began as a trickle and quickly became a torrent. I'm sure there will be more waves to face in the years to come. It's a process of healing, and often new transitions open up new wounds. Benjamin's only a few months shy of turning three. He does show many characteristics of being a toddler, but in many of his abilities, he's still stuck in the baby stage. Today I'm very tired of the baby stage, (though I still long for another one)!  Today I'm tired of not knowing what it's like to have a typical child. I've grown to appreciate Holland, but I still long to visit Italy too. Tomorrow I may feel different. Tomorrow I may be so excited and encouraged by the huge strides Benjamin has made in his development over the last several months. Tomorrow my heart may brim with pride as I watch him crawl and play and roll his ball back and forth with me. I may smile as he happily crawls to me as I say and sign "Benjamin, do you want some milk to drink?" I may applaud him as he signs "eat" before I let him take a bite of food and encourage him as I hand him his spoon, and he brings it to his mouth. Tomorrow I may laugh as I hear his contagious laughter, and he tells me in his own distinct ways, "Mommy, I love you!" There's some language that doesn't require words.  But today, I'm tired, and today my heart is hurting. But no matter how tired I may feel, I will never be tired of loving my son.

True Value

One recent morning, Shawn didn’t have time to pack his lunch before leaving for work, so I called later, offering to run one by the school for him. He happily agreed, then called back asking me to bring it by the old high school gym instead of to the middle school where he primarily works. It was the weekly practice day for the Special Olympics, and students from elementary through high school would be bused to the gym to take part in the exercises. Shawn works as a Para for a 6^th grade boy who has cerebral palsy and is wheelchair bound. He is a great kid with a delightful personality, and I love hearing Shawn’s stories each week about their interactions at school. They make a good team! I was excited that things were timed so perfectly; I had wanted to check out one of the practices since he’d told me about them a few weeks prior. I quickly put together Shawn’s lunch, got Benjamin ready and headed to the car. I couldn’t wait to meet the little boy he works with after hearing so many stories. I couldn’t wait to see all of the children and teens participating in the practice. I couldn’t wait to see Shawn proudly show off his son to the students and staff. I was eager to see how the Special Olympics practice was structured, as we have every intention of encouraging Benjamin to participate when he is old enough. I was confident that I would feel right at home in this setting. After all, I am the parent and primary caregiver for a child with special needs. Speculations can never be proven as reality, however, until they are tested, and I was to be surprised by how I scored.

Benjamin fell asleep in the car shortly before we pulled into the school parking lot. Shawn ran outside to meet us, and, since it was cold, he grabbed Benjamin and ran back inside while I followed behind with the stroller, diaper bag, and his lunch. The cold air and sudden motion woke our son up, and he was not pleased to be whisked away to an unfamiliar setting when he wanted to be napping. He was cranky from the start. Shawn’s little guy from school was waiting for us right inside. I was happy to meet him and asked him playfully, “Are you keeping Shawn in line and making sure he behaves himself?” He laughed and said softly, “No, he keeps me in line.” I liked this young man right from the start, but my heart hurt at seeing firsthand the level of his physical disability. As I held Benjamin in my arms he said, “Sometimes I miss being that small.” I was dumbfounded.  I managed a laugh and asked, “Do you remember being that small?” He quietly replied, “No,” and I wondered what would cause a 6^th grade boy to miss the dependency of being a toddler? I realized, though, that he has experienced very little independence in his life because of the complications of his condition. All he’s known is dependence.

We made our way into the gym, where most of the students were sitting on the bleachers, waiting for their turn to race, one of the first activities of the day. Most of them were excited to see a small child, and many gathered around inquisitively. Shawn proudly made some introductions and tried to walk around with Benjamin, but by this point he was overwhelmed by all the new people, the noise and the unfamiliar environment, and all he wanted was his mommy! I held him and comforted him and tried to answer the student’s questions.  A teenage girl whose speech indicated her cognitive disability kept insisting to see him again. At one point she stated she wanted to hold him, but I ignored her request, knowing it would not go well. I didn’t want to admit it to myself, but I felt uncomfortable in her presence.

As I looked around the room, I saw many levels of disabilities. There were a few other children with Down syndrome; one in particular we had met on more than one occasion. A small number were wheelchair bound-some with limited use of their limbs and some completely invalid. There were students who had no apparent disability until they began to speak, as was the case with the teenage girl who was so fascinated by Benjamin. Due to my son’s cries, I had to leave the gym and few times to try and calm him down, but I hoped to watch some of the morning’s activities. I was able to watch Shawn’s little guy slowly wheel himself part way across the gym and then around some orange cones that Shawn set out for him. It took him a long time, but staff and students were cheering him the whole way.

I finally got Benjamin calm enough to sit on the first bleacher right inside the door, but it didn’t last long. During the few minutes we had, I watched a couple of the races, as students ran across the gym three at a time. Though many were slow and their movements were awkward, they received cheers and affirmation from the crowd, and it was evident that they were enjoying themselves. I was able to watch the little boy with Down syndrome whom we know race against two other boys, one who also has Down syndrome. He ran his little heart out and left the other two boys trailing behind. Which one will Benjamin be? I wondered. Will he enjoy the Special Olympics or will his interests center elsewhere?

I felt such a mix of emotions as we sat there. I wasn’t as prepared as I had expected to see so many different disabilities up close. I thought I would feel at home, but instead I felt misplaced and out of my element. I know Benjamin has Down syndrome; I witness firsthand the disabilities and delays that he experiences, probably more than any other person. However, first and foremost, he is my son. I know him, and I am comfortable in knowing him. I did not know these other children, and I was ashamed of the discomfort I felt in their presence. I reflected on how each one was someone’s son or someone’s daughter, loved and valued just as I love my son (if all is as it should be). I silently prayed that God would give me eyes to truly see the beautiful people filling the room. I realized that as Benjamin grows, this will in time become an increasingly familiar community to us. I wrestled some with that reality, a small tinge of grief piercing my heart. It was another reminder that life will look different with our son than what we’d once envisioned.  I wondered, What does it look like to bring the Kingdom of God to these ones? I want my heart to truly love them.  

I didn’t take long before Benjamin was wailing again, so we went and said our goodbyes to Shawn and headed home. I reflected in the car as we drove, and I’ve reflected more over the days since this experience. I’ve had many thoughts. I’ve thought about the value and beauty of a human life. We live in a culture where appearance and personal achievement is highly valued and sought after, worshipped even. In the midst of such propaganda and pressure, do we remember to simply value people?  Benjamin may never take first place in a race or any other event. He may come in dead last, even at the Special Olympics. Will either outcome or the many possibilities in between alter the level of pride and amount of value I place on my son? While there is a place for taking pride in our children’s accomplishments, I don’t want it to be based on how he “measures up” to those around him. I want my son to know that his Dad and I are full of pride for him, simply because he’s our son. I want to cheer him on with enthusiasm as he runs this marathon called life, encouraging him to do his best and to be who he was created to be.

 I also thought about how much needless emotional and mental energy I waste when I critique whether or not I’m “measuring up” to those around me. My Heavenly Father doesn’t compare me to others, so why am I so quick to compare myself? He loves me simply because I am His. I thought about how much I can learn about the Kingdom of God from the special needs community, a community comprised of so many unique individuals, each with their own beauty to offer the world. I want to see Jesus in the faces of the ones the world calls unlovely. I want to be reminded of Him in the ones the world sees as forgotten. I want to give and receive His unconditional love that is never based on performance and is only experienced through relationship. I want to value what He values.

Unconditional Love

Even though I had to give him a stern “No” a few minutes ago for throwing his cup, Benjamin crawls towards me, smiling and laughing, eager to crawl up into my lap. He is fully confident and fully expectant that he will be received with hugs and kisses. His mind is not on the recent discipline but on the love he knows his mommy has for him. He comes to me at any time of the day, no matter what is happening or who is around, wanting and expecting my attention and affection. . . and he gets it. Benjamin doesn’t analyze his behavior over the day to determine whether I will receive him or whether I will hold him at arm’s length. He doesn’t try to find ways to “earn” back my favor after being disciplined. He approaches me with laughter and with joy, or with tears and the desire for comfort; either way he is confident he will be received with love and acceptance. 

This morning Father God ministered to my heart through the simplicity of my sweet son. As I love my son, I get a small glimpse into the heart of a loving God. As I write this, I am listening to the live webstream from the International House of Prayer in Kansas City. The worship team has just broken into spontaneous song. A young woman sings "What a Father You are! You never reject us or turn us away. Though our fathers and mothers reject us, You never turn us away." I'm listening, Daddy! You are speaking! I cannot conceive of ever rejecting my son. Yet, my love is still an imperfect love. There are wounded fathers and mothers in this world who do reject their children, whether intentionally or unintentionally. In my imperfection, Benjamin will probably experience feelings of rejection from me at some point in time, though that is never my desire. But not so with Father God. His love is perfect, unconditional, and constant. Love originates in Him and finds its ultimate fulfillment in Him. It does not stand to reason that my love and delight for my son could be greater than the Father's love and delight for me. It does not stand to reason that He would give me affection for "good" behavior and withhold it for "bad" behavior. His heart is always for me; His affection is always extended to me. Like Benjamin, though, I have a part to play. I must be willing to come to Him with simple trust and love, confident that I will be received. I will be loved.