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.  

Wishing...

"I was certainly in a state! 'Clogged with wishes.' I was wishing that my wishes were what God wished, and if my wishes were not what God wished, I wished that I could wish that my wishes would go away, but the wishes were still there."

"If the yearnings went away, what would we have to offer up to the Lord?"

"My heart was saying, 'Lord, take away this longing, or give me that for which I long.' The Lord was answering, 'I must teach you to long for something better."

-Elisabeth Elliott, Passion and Purity

I'm wishing today that the deep longings in my heart would be subject to the One who longs for me. I'm wishing that my desire for Him would overshadow the other desires stirring inside of me. I'm wishing that the pain and the ache would fuel the fire of worship in my heart. Jesus, only You can truly satisfy my heart.

"Delight yourself also in the Lord, and He will give you the desires and secret petitions of your heart." (Psalm 37:4 Amplified)

To Wean or not to Wean?

It really was a big question. By the time we reached Benjamin's 2nd birthday (May 22, 2011), the question of how long I would continue to breastfeed began to surface more and more. As I've written previously, there were months and months that weaning was not an option since my son was not able to obtain and adequate amount of fluid intake from a cup. I loved nursing, but the desire for a second child was (and is) growing in me. I knew that I would probably be more likely to conceive once he was weaned and my hormones had the opportunity to re-align themselves again. Benjamin was well on the road to holding his cup independently, and we were already down to only two nursing sessions a day: first thing in the morning and right before bedtime. My sense was that these were more for comfort than anything, but it was still a difficult decision to make. The bond I had with Benjamin through breastfeeding was so precious, especially considering how hard I had to fight to be able to nurture him in this way. It wasn't something I wanted to relinquish until I felt sure of my decision, for once it was made, it would be final.

After Benjamin's birthday, we continued with our twice daily nursing sessions for the entire month of June. A little way into July, I decided I was ready to complete the weaning process. I thought the easiest session to cut first would be the evening one. So, one night, instead of nursing my son, I offered him a cup of milk in his highchair. Shawn and I wondered if he would be fussy when we put him to bed that night, but to our surprise and relief, he slept the whole night through. We continued our morning nursing sessions for two more days, but I knew that at this point he wasn't getting much milk from me anyway. On July 15 I decided to take the final step in the weaning process. Shawn got Benjamin up and changed his diaper, but instead of bringing him to me in the living room, he took our little boy straight to his highchair where I was waiting with a cup of milk. At first he cried and didn't want it. He is very much a creature of habit, and he did not appreciate this change in routine! However, when we offered him some cereal, he happily gobbled it up and then contentedly drank his milk. It was so much easier than I had anticipated! I knew my son was ready, and though there was some sadness, I was ready too. I wrote in my journal the next day "Benjamin was officially weaned yesterday. It was and is a bittersweet relief."

In the days and weeks that followed, I experienced some different emotions, but I always felt at peace with my decision. I missed the cuddle time that nursing afforded the most. For the majority of our two years of nursing, Benjamin would cuddle with me when he was done eating. I would make faces at him and give his kisses; he would make faces back and squeal with delight. However, during the last few months of nursing, this routine was already shifting. As soon as he was done, he was done, and he would begin pushing against me to get down on the floor where his toys were. He was already starting to gain a greater measure of independence, and he needed to. In fact, only 3 days after Benjamin was weaned, he started his own version of a belly crawl (more on that later)! He was quickly leaving his baby days behind him and venturing into the world of toddlerhood! I was relieved by the greater measure of freedom I had a well. If Shawn and I wanted to have someone babysit Benjamin while we enjoyed an evening out, I didn't have to be back at a specific time to nurse him. We could simply leave a cup of milk, and he was happy (most of the time)!

Benjamin continues to gain more independence in his behavior and personality. He is very much a little boy, and he is so much fun! He is still a Mommy's boy (much to Daddy's disappointment), but he is becoming more and more his own little person. I have to take advantage of what cuddle time I can get now, usually when he's sleepy, because he is a little ball of energy, eager to play and explore (as long as he knows I am close by). I'm so proud of him! He still enjoys his milk in the morning and evening, though we have since smoothly transitioned from cow's milk to soy milk, which has done wonders for his digestion. I look back with gratitude and affection for the two years of breastfeeding I enjoyed with my son as well as the good nutritional start I was able to give to him. I look forward with excitement and pride at the little boy he's growing up to be. And, to be perfectly honest, I look forward with eager anticipation to building a special bond with baby number two, whenever he or she graces our lives in the future!

The Comparison Game

In the comparison game, no one ever really wins. If I come out feeling better than, it only feeds an unhealthy pride. If I come out feeling less than, discouragement and self-pity are right around the corner. Either outcome brings greater bondage, not greater freedom. Neither outcome brings me closer to the heart of Jesus. Knowing this first-hand, why am I so quick to slip into this deadly game again and again? This morning I found myself in the familiar struggle…

Shawn and I have been trying (unsuccessfully so far) to conceive a second child for a year’s time now. We tried two years for Benjamin. The disappointments of those two years were very painful. The disappointments of this last year have been as well. Then, a few days ago I had an unexpected and frightening attack of the same nature as the gall bladder attacks I was suffering from prior to my surgery last October. I didn’t think that was even possible, but there I was getting sick in the bathroom and screaming in agonizing pain on the floor while Shawn raced to get Benjamin ready so he could drive me to the ER. It also happened to be the day that my menstrual cycle was scheduled to start, so before I could be treated, they had to run a pregnancy test. I wrestled back and forth with my emotions as we waited for the results. I so long to be pregnant again, but I also wanted to be able to take some pain medicine and have the CT scan run on my stomach to find out what in the world was going on with my body. The results were negative, and the medical staff continued in treating me. The CT scan revealed no problems with my appendix (one of the initial fears) and no evidence of stones in the duct connecting my liver to my intestine. The ER doctor concluded that I must have a build-up of “sludge” (a highly medical term I know) in the duct from my liver to my intestines, which actually consists of several microscopic stones. So, I was instructed to continue a low-fat diet, take the pain medicine left over from my surgery as necessary, and call my surgeon on Monday (tomorrow). He can look at the results of my CT scan and decide what steps need to be taken next. Sigh…

This morning the disappointment of another false pregnancy test, coupled with the unexpected medical complications was really weighing on my heart. Before I knew it, I was playing the comparison game. Why do so many women, who may not even be trying to get pregnant, conceive so easily while we continue to try month after month? Why do so many women give birth to healthy baby after healthy baby when our son has had so many complications? Why am I fast approaching my 30^th birthday with only one child when there are so many women younger than me who already have multiple children? Why am I having the medical complications I do when I’m living a healthier lifestyle than many of the people around me? It appears to be only another road block in my desire to conceive. What about the countless unborn lives that are murdered daily in the name of “convenience” and “freedom of choice?” I so want to bring a new life into the world and cherish that life as a precious treasure from God. I also long for the experience of raising a “typically developing” child who will naturally achieve new milestones without the intensity of intervention, work, and tears that we have and are walking through with Benjamin. What would it feel like to bring home a healthy baby after a safe delivery? Why is that the expected norm for so many and still only a distant dream for me?  Pretty soon I was in an emotional tailspin. I knew where I was going and that it wasn’t helping me at all, but it was a struggle to come up and out.

 During our worship at church this morning we sang about the cross of Jesus Christ and the immense love He demonstrated to us. As I sang and played my guitar, I pictured Jesus’ passion in my mind’s eye and thought, “How can the One who poured out His life blood in love for me, not be trusted with every aspect of my heart and life?” I reminded myself of something He gently spoke to my heart a few months ago, as I poured out my longing to Him for a second child:

Do not waste this time but fill your heart with the oil of intimacy. Cherish this time and be content in Me. It is My gift to you.

I know that when our second child comes, the busyness and demands on my time will significantly increase. I know that the one on one attention I’ve been able to give Benjamin has been so valuable, especially in light of his many delays. I know that the time I’ve already had to fight for to get alone with Jesus has been a gift.  He is inviting me to go deeper into His heart during this season of waiting. Even the uncertainty of my medical condition can be a place to lean into Him more. The comparison game robs me of these truths. In the comparison game the attitude of my heart accuses God, (though I may not say it with my mouth) instead of trusting Him. It lies to me that He is unjust, that He is withholding good from me, that He doesn’t care. I know these things are not true, but how quickly my emotions can be drawn in this direction if I do not take my thoughts captive and bring them back to Jesus.

Life’s trials and disappointments can come from many sources. There is an enemy of our souls who is out to steal, kill and destroy. There are the consequences of our own poor choices or the poor choices of people in our lives. There is the discipline of the Lord, which He uses to draw our hearts back to Him if we have strayed away or to mature us in our walk with Him. Whatever the source of the suffering, though, Jesus desires to use it all to bring us to a place of greater intimacy with Him. He always has the end in mind; He sees past the temporal and into eternity; surely He can be trusted with every facet of our lives!

Will I recognize the gifts of God in my life when they come packaged in a way I did not expect or request? Will I be thankful for and receive His gifts when they look different from what I wanted? Do I believe that I have a better handle on what my life should look like than my Creator, who knows all and loves me without reservation? Will I still hope in His promises when everything around me seems to be screaming the opposite? Will I genuinely trust the One who left heavenly glory to identify with my own weakness and brokenness and to pour out His life for me that I may be made whole?  

I’m so thankful that Jesus is not surprised by my emotional struggles. He is not offended by my weakness when I find myself slipping into the comparison game--again. He is patient and tender towards me in my brokenness, but He is not content to leave me there. He is inviting me to life and freedom, though I must choose to respond. Some scriptures went through my mind this morning as I wrestled through my emotions:

Shall the clay say to him who forms it, ‘What are you making?’ Or shall the handiwork say, ‘He has no hands?’ (Isaiah 45:9b NKJV)

After the risen Jesus prophesied to Peter about the martyr’s death he would face to glorify God, Peter looked at John…

Peter, seeing him, said to Jesus, “But Lord, what about this man?” Jesus said to him, “If I will that he remain till I come, what is that to you? You follow Me,” (John 21:21-22 NKJV).

Lord Jesus, give me grace, whatever the path may look like, to follow closely after You.

Before my surgery, unbeknownst to me, Shawn took several pictures of family and friends holding up similar signs. After my surgery he surprised me with a homemade slide show set to music. I loved it!

Someday

Someday Benjamin will learn to stand. Someday he will be able to walk next to me, holding my hand instead of being carried everywhere. Someday he will be able to run to his Daddy when he comes home from work. Someday he will be able to say “Mommy” and “Daddy;” he will be able to articulate words and form sentences to communicate his thoughts and feelings. Someday he will be able to feed himself without assistance. Someday he will no longer need diapers. Someday he will have developed the necessary motor skills to throw and catch a ball, to go down a slide, to ride a tricycle, to color a picture, to make a simple craft, etc. Some days the longing for “someday” is more deeply felt than others. Today has been one of those days…

This morning we had an appointment at the local health department with Benjamin’s audiologist to have casts made for new ear molds for his hearing aids. This is never a pleasant process. I have to hold his arms down and keep his head as still as possible while she examines his ears one at a time. After examining an ear, she pushes a small piece of cotton with a string attached to it down deep into the ear canal. She then fills the ear with a soft putty. This has to stay in place for a few minutes while it hardens to create a cast of Benjamin’s inner ear. These are then sent in to a lab that will make his new molds, which we will hopefully be able to pick up in a few weeks. My son hates this process. He doesn’t like things (other than his hearing aids, and on some days that’s still questionable) in his ears, and he struggles the whole time. Being held down makes him angry, and by the time the whole process was complete, he was a mess of tears and snot. I was hopeful that our next activity would be a welcome distraction and cheer him up.

The local health department hosts monthly play groups, each highlighting a different theme. Today they were holding their Christmas play group, with multiple crafts, snacks and a free book from Santa Claus. I had been planning for a few weeks now to take Benjamin, hoping he would enjoy being around other children and gaining some new experiences. The audiologist walked us down the hall to the center of the activity. My son was still teary-eyed, and the commotion of the busy play group seemed to only add to his distress instead of capturing his interest. As I carried him around, examining the different craft options, he continued to fuss and cry, and I felt like all eyes were on me (though that may have just been in my head more than anything). All of the tables were being manned by students from the local technical college.

I decided to start at a table to make a pasta necklace, with dry noodles painted red and green. I awkwardly held Benjamin, trying to talk to him about the craft as I slid noodles over a covered wire. I finished it quickly, and the students helped to secure it around my son’s neck. He was not impressed. Within 5-10 minutes he managed to rip it off, scattering noodles on the floor. Some of the pieces were broken in the process, and his necklace found it’s final destination in the trash can. Sigh…

After making the necklace, we headed over to a play corner that was really designed for babies, but I hoped a musical toy would calm him down and hopefully alter his crabby mood. It was not to be. Benjamin pushed away the toy I tried to entice him with and continued to cry, while a baby about a third of his size sat and played contentedly. I started lifting him up over my head and kissing his tummy which scored me some smiles and giggles, but it was short lived. As soon as our little game was over, the fussing resumed.

We made our way to another table where you could make a candy cane with a pipe cleaner and red and white beads. We didn’t even begin this one. Benjamin tried to dump all the beads on the floor, but we caught him in time, and he continued to throw his fit. I awkwardly excused us and headed to the side of the room to chat with a few of the coordinators, explaining the effects of his audiologist appointment. It was during this time that the pasta necklace met its demise. They were understanding, and I knew I didn’t have to justify my son’s behavior, but I was feeling both disappointed and embarrassed.

My next idea was a trip to the bathroom to give him a brief change of scenery. This appeared to  work, until we re-emerged into the play group room and Benjamin began to cry again. Now, at this point I should have got us bundled up and headed home. I had so been looking forward to this morning, though, so I held on to the hope that something would capture his attention, and we could make a fun memory together. I decided to sit down with him for a few minutes so he could just observe things from a safe place and chatted with the woman beside me. I was waiting for a spot to open at a craft table where we could make an ornament and a Christmas door hanger using foam stickers. When a chair opened up, we headed that way. I was hoping Benjamin would enjoy placing stickers, but he had no interest and continued to fuss while I quickly made him an ornament and a door hanger and tried to talk to him about it step by step.

At this point I knew there really was no use in staying. I did want to get him a free book from Santa, and while we waited for one child to finish up, I took my son to a station where a young woman was hot-gluing pom-poms onto popsicle stick snowflakes to make Christmas ornaments. Each child could pick out the colors they wanted. Benjamin was slightly interested in pulling handfuls of pom-poms out of the bags, but his idea was to then throw them on the floor. He had tried to throw multiple things on the floor by this point and had succeeded with some, including the door hanger Mommy was working on and his right hearing aid. The young woman quickly finished his ornament and handed it to me. I was happy that Benjamin at least played a part in picking out the colors, even if it was by default.

We headed over to Santa’s corner, and his helper presented my son with a small book. He asked us a bit about our Christmas plans and tried to get Benjamin to give him a high-five. My son just looked at him not knowing what to think and continued his complaints. I knew I had kept us there too long. We got our coats on, I strapped Benjamin in his stroller, and we made our way for the door. As we crossed the room, I looked longingly at all the small children happily making crafts and walking from table to table. I knew many of them were probably close to my son’s age, some older, some younger. I felt so alone. “Well, we tried,” I said to one of the coordinators as we reached the doors. She encouraged me “That’s all you can do,” and gave me a flyer listing dates and themes for future play groups. I thanked her and we went on our way.

I felt such disappointment in my heart as we drove home. I recognized some of my own selfishness too. Did I want the experience for my son’s benefit or for my own? When he didn’t respond in the way I wanted him too, I was upset. He hasn’t reached the “somedays” I dream about yet, and I can’t make him get there on my time-table. Today I’ve been reminding myself that while it’s ok to look forward to the “somedays,” I don’t want that longing to rob me of the ability to enjoy my “todays.” I want to cherish every season of my son’s life, knowing that there will be joys and frustrations, victories and obstacles all along the way. The “somedays” I dream about now will some day be only distant memories, and new “somedays” will appear on the horizon. There is treasure to be found in today, though, and wisdom to be gleaned if I keep a teachable heart. All of my “todays” and all of my “somedays” are given as a gift to prepare me for the great “Someday,” when my faith will truly be made sight, and I see my Jesus face to face. I want to live in anticipation of that “Someday,” and I want to raise my son to do the same. His disability is but for a moment; his wholeness will be for eternity.