Time to Dream Again

It's time to dream again...

Yesterday a friend shared a video with me on Facebook titled "They Said This Girl With Down Syndrome Would Never Sing. Her Response? Stunning." This beautiful, twelve-year-old girl has overcome the common hindrances associated with Down syndrome, including low muscle tone (which affects the mouth as well), a low-pitched voice, and poor short-term memory, and has worked diligently to learn to sing. In the video she sang a beautiful song with a fairly broad vocal range and hundreds of memorized words; she even had a sinus infection while doing so! She has defied the limits that others have placed on her due to her genetic condition, and she desires to inspire as many people as possible.  As the video came to a close, I suddenly realized how desperately I was in need of this encouragement.

When you are raising a child with special needs, new layers of grief will undoubtedly emerge from time to time. Sometimes they hit as huge, crashing waves that feel as though they will pull you under. Other times you feel their impact as small ripples pressing against you as you walk through your very ordinary days. Lately, I've been experiencing the ripple effect...

I felt the ripples after Benjamin's recent bath time. I helped my big boy lay down on his towel that is almost too small for him as I dried him off and fitted him in a clean diaper. As I dressed my five-and-a-half year old, I encouraged him to assist me in the small ways that he is currently capable of doing. I found myself saying, "Benjamin, you need to learn to dress yourself. Mommy doesn't want to still be dressing you when you're ten." At the same time I wondered if I would be.

I've felt the ripples as Benjamin yells in frustration when he wants something or things aren't going his way. We have been trying to curb this behavior and encourage him to utilize the few communication skills he does have. My heart hurts for him. I know he desperately wants to communicate, and at times he probably feels so overwhelmed. I wonder when he will finally be able to speak his first word.

I've felt the ripples as I've observed his very limited interests in play, which often involve pulling the handle on his See n' Say or twirling a stuffed animal in front of him. I've felt them as he actively resists anything new, and I wonder when his play will finally begin to progress. When will he start using his imagination? When will he be willing to roll a ball back and forth for more than 30 seconds, or push a toy car, or build with blocks, or color a picture?

I've felt the ripples as I've watched my small toddler quickly passing her big brother in so many areas of development. How long will he behave as a very small child?

Sometimes the ripples are subtle enough that I don't even recognize that I've been confronted with grief again. Watching that inspirational video helped me to recognize where I've been and encouraged me to start dreaming again for my son. His present delays and challenges are not the final say in what his future will hold. His current limitations do not define his potential for growth. This seemingly endless season is just that--a season. It will pass. I've been reminding myself of how very far Benjamin has come in the last few years. I'm reminding myself of what a miracle his little life has been so far. I'm reminding myself of the many lives he's already touched just being him. I'm reminding myself of God's promises over his life. I'm reminding myself that the One who knit my son together in my womb is the God of his past, his present, and his future, and with Him all things are possible.

It's time to dream again!

 

Peers and Play

"TAG! You're it!" A gym full of four and five year olds run all around, shouting and giggling in a delightful game of freeze tag. Instead of using hands to tag each other, they wield giant foam pool noodles. The energy and excitement in the room is electric as they exert the bubbling energy that only a small child can produce. Among those running and laughing is an exuberant five-year-old named Benjamin, who happens to carry an extra chromosome. He squeals with unhindered joy as he makes his way around the gym, thrilled to be a part of the activity surrounding him. I wish I could have been there to see it!

When Benjamin returns home from school each day, I am quick to check his backpack, where his aid keeps a daily journal of his activities and behavior. A few days ago she wrote about the game of freeze tag during their gym class. She clearly communicated my son's excitement in the midst of it, commenting, "I wish you could have seen him!" My heart swelled as I envisioned my little boy taking part in a game with his peers and having so much fun doing so. Sometimes it's the little things that can be the most meaningful!

Benjamin is attending his second year of Pre-K, and he loves it so much! Next year we will transition him to Kindergarten, and we may decide to complete two years of that as well. We are letting him take his own pace, not in a hurry to push him through anything. His experiences in school, first as a three-year-old at Head Start and now as a student at a local elementary school, have been wonderfully fulfilling and relieving.

When he was still a small toddler, some other stay-at-home moms and I set up a weekly play group. We  initially met during story time at the library and realized our children were all very close in age. We took turns hosting the play time week to week. Benjamin was the only child with special needs, but I was happy to give him the opportunity to be around his typically developing peers and to have the opportunity for some adult conversation during the day! Our children were still young enough that they didn't really play with each other but were content to play side by side. In reality, the other children played while Benjamin sat and watched, sometimes twirling his small, stuffed gorilla by the arm or playing with a light-up musical toy. Though I enjoyed those times, I wrestled with some insecurities as well. It was difficult to see the numerous skills that the other children had easily accomplished, especially since so many of them were still on a distant horizon for Benjamin. Sometimes my mind would wander to the future when my son would be in school, and I wondered how the other children would treat him. Would he be a target? Would he be teased all the time? Would he have many friends?

I realize that no child is immune from being teased by their peers. I experienced teasing multiple times as a child myself. I know that my son is still very early into his school years, and I recognize that he will undoubtedly have to deal with poor treatment from classmates at some point, as all children do. However, I have been so pleasantly surprised thus far at how warmly Benjamin's peers have received him. When he was attending Head Start, he would be given an enthusiastic greeting from the other children upon entering the classroom. "There's Benjamin! Hi, Benjamin!" His year-and-a-half attending Pre-K has been just as encouraging. His classmates approach him almost daily, inviting him to play. He has had notes and pictures sent home with him from other students. Last year, his classmates would often argue over who got to read a book to him. While the other children recognize that there is something different about my son, they readily accept him. In some ways, it seems that his delays make him even more endearing to his little friends.

I am so thankful that going to school is something Benjamin looks forward to each day. I'm so thankful that it is a place where he feels safe and accepted. My prayer is that this will continue as he gets older. I pray that he will be able to form meaningful friendships in time as his social skills and social awareness increase. I pray that he will grow up feeling confident in who he is. I pray that he will always feel that he is loved and valued, by teachers and peers, by friends and family, and most importantly, by the One who created him and who calls him a masterpiece!

Baby Love

"There is little Benjamin their leader..." (Psalm 68:27). I remember well the night that I felt the Holy Spirit whisper this Psalm to my heart. It was fall of 2008, and the next morning I would take the pregnancy test that would open up the world of parenthood to Shawn and me. After two years of trying to conceive and a multitude of disappointments, I was almost afraid to hope that my dream of having a baby might finally be coming true. We always desired to name our first son Benjamin. This scripture spoken to my heart brought so much encouragement. Indeed, Benjamin was growing inside of my womb, and he would be leading the way for any future children to come. While we could never have imagined the challenges and heartache we would face at the time of his birth, we also could not imagine the depth of love we would feel for our new baby boy. In the midst of the shock and pain surrounding his diagnosis and multiple health complications, our hearts felt as though they would burst with a love unlike any we had experienced before. To see Benjamin was to love him.

For nearly the next four years, Benjamin had Mommy and Daddy all to himself as we loved him, nurtured him, and came along side him to overcome the many challenges that came our way. And while the desire for more children was always present within me, I so cherished the time with my sweet son. In retrospect, I think he needed that time to have us all to himself.

 

 

Then in February of 2013, we welcomed our beautiful daughter Joelle into the world. I remember the day the ultra-sound technician announced, "It looks like you have a girl!" and my heart leapt inside of me. Holding my healthy newborn and bringing her home within just a few days brought such healing to my heart. She is such a gift to us!

 



She is nearly two years old as I write this, and she is our busy, energetic, strong-willed, and affectionate little princess! Shawn and I take so much delight in watching her personality emerge. We also enjoy watching Benjamin and Joelle together. There were some bumpy times as we transitioned from being a family of three to a family of four, but I know my children are so good for each other. Like all siblings, they demonstrate jealousy and frustration towards each other at times, but there are also sweet moments of smiles, laughter and even kisses blown. They learn from each other and copy each other, some habits good and some habits bad!  I look forward to watching their relationship develop and mature over the years.

Recently we were delightfully surprised to discover that I am pregnant with our third child! When I was expecting Joelle, it was hard to fathom being able to love another child as intensely as I love Benjamin, though I knew I would. The love I have for each of my children is unique--I love them for exactly who they are. They don't receive a portion of my love; they have the fullness of my love. As the beautiful reality is sinking in that our family of four is becoming a family of five, my heart is thrilled to consider having another precious baby to love. I am a blessed woman!