It’s Monday and Kristie’s day began before most of the world opened it’s eyes. It’s 2 a.m. and one of her two sons is ready to start his day. Kristie rubbed her eyes, dreary from numerous days of scattered sleep.
“Can I get up?” asked her youngest son Blake standing next to her bed
“Go back to bed, it’s too early.” As he wandered back to his room, Kristie knew she shouldn’t get too comfortable. She knew he would come back and he’d probably ask to go to the toy room. Several minutes later, he was back. ” Come on,” she said as she walked with him to the toy room. She laid on the couch and he grabbed his iPad. She didn’t look forward to the next four hours of interrupted sleep on the couch.
On this morning Kristie couldn’t sleep. She settled on the couch and made her best attempt but couldn’t. Instead she ended up watching her little boy. Her mind began to wonder about all the things surrounding Blake and her oldest son, Drew. She began to rehash the “what-ifs” and all the other parts of her life she tries not to think about. It’s the same inner monolog that plagued her when her oldest son Drew was born, it’s the same crushing thought that wonders what life would be like without Fragile X Syndrome. What if their two boys never had it and what if she never carried it? “What if,” she wispered to herself.
She began to wonder what their life would have been like without all the harsh looks, awful critism, and impossibly difficult days in the fifteen years since Drew was born. She recalls the worst of moments when a harsh stare was enough to make her family feel unwelcome and how a terrible comment like, “You should stop having those defective children,” seemed to cut her to her soul. She could still feel the same sting she felt fifteen years ago when it was confirmed that Drew had Fragile X.
She sleepily closed her eyes and began to dream, or maybe it was her imagination but when she opened her eyes, both of her boys stood in front of her. “Hi Mom!” They spoke with unbelievable clarity, each offering arms open wide. “Thank you,” she heard from both boys harmoniously. In her confusion she also heard, “We know it’s been hard, sorry Mommy.”
“No babies, don’t say that.” She thought she had spoke but the words didn’t come out.
“I love you.”
“I love you ”
Each boy embraced her. The very real feeling startled her awake. It was Blake. He was pushing on her arm. He wanted to watch a movie. It was 4 a.m. She got him settled again, all the while playing back the vivid vision in her head. She returned to the couch and now she really couldn’t sleep. She felt a gnawing in the pit of her stomach. If getting carried away with an impossible notion where her boys weren’t plagued with Fragile X wasn’t enough, she felt like she got a very real glimpse of it. She was very certain her boys would never fully understand the difficulties their family faced daily. The boys didn’t know life without Fragile X, it’s all they knew, but Kristie couldn’t help but wonder.
What would it feel like without the cloud of anxiety that seemed to hover over her boys. The anxiety that make daily schedules a must, especially when plans change outside the normal routine, small difficulties a big deal, and outings that often feel more like a production. The anxiety that causes fear of the unfamiliar. The same fear that causes tension between the boys and sometimes leads to physical outbursts. Most importantly, what would life be like without her own anxiety over every decision made in regard to her boys?
Kristie and her husband wanted to be prepared because they knew they could not afford take the trial and error approach to parenting. They knew they would need support and help with the decisions they would have to make for their boys and a foreknowledge of how to deal with the issues that come with Fragile X. They have attended meetings and conferences to help navigate life with their two special boys. She and her husband couldn’t simply ask, “When will Drew start school?,” they asked questions like, “What’s an IEP?” and “Will this school be able to accommodate his special circumstances?”. They couldn’t anticipate developmental milestones, they had to work hard to help the boys reach them. Each day is hard work and she and her husband often feel like they are fighting an uphill battle. They fight everyday to make life fulfilling for their boys while trying desperately to somehow fulfill their own needs. So they do wonder what would life be like if every decision didn’t feel like a thread that could pull the complex tapestry of their lives apart.
Kristie blinked heavily, “It’s six Blake, let’s get a shower.”
At this age both her boys should be taking showers independently but both boys need help as developmental delays and anxiety keep them from doing it without assistance. Soon she would have to wake Drew who is often hard to get out of bed and often difficult to bathe. After the routine of morning showers, Kristie either feels ready to approach the day or ready to go back to bed. Today was difficult. Both boys needed plenty of help and verbal cues to prepare for the morning. It felt like an entire day was packed into a mere few morning hours. Already tired and exhausted, she began to make a schedule for the day, but today was proving to be too much. She began to cry.
Drew and Blake saw her crying. Drew nudged her and said, “You’re a sad little Mama,” and stormed off but Blake stood for a moment, looked at her, and began to cry.
She couldn’t help but smile through her tears. She looked at Blake and just like any other mom, she saw her baby and wiped away his tears. But Kristie became especially grateful for this moment. There was no anxiety, schedules, or questions, just a moment where she could cry with her little boy. It was a moment when he was moved by her sadness. This small moment reminded her of a great many things.
What would she be like without Fragile X? Would the small and grace given moments such as these be as special? Would she see the world with the same set of eyes if her life wasn’t entwined with it? Undoubtedly, the disease has laced each day with challenges most families will never face, but it has also allowed life with her boys to teach her many things.
She knows patience is not given but learned. She knows even when she has felt like she has failed, there is always an opportunity to try again.
Grace is invaluable. She knows why it is needed because she knows she has needed it.
Love should be given blindly and love is not defined by another’s capacity to reciprocate that love.
“I love you Blake,” she said as he left the room. Kristie wiped her own tears, reminded of why she makes it through each day.
She has been given a gift and although she can’t help but occasionally wonder “what if”, she knows she is filling a greater purpose. Kristie is the woman God has intended her to be, a woman who serves as an example of His unending love and grace. Kristie sees the world with compassion because she has needed compassion, she has patience because she has to endlessly practice it, and she loves her family as selflessly as God wants to love each of us.
Yes, Kristie has grieved the life she envisioned for her boys, she still prays for easier days, and still desires understanding from those she comes into contact with, but with it, she has an opportunity. She knows there will be days when she will wish the world would love and accept her boys as she has but it won’t, she struggles with the inevitable bullying and dirty looks that frequently come their direction, but you won’t see her deny the blessings she has received through each of her boys. Life for Kristie and her family can be hard but they truly love the life they have been given despite the difficulty. They have been given the rare opportunity to show others that true joy comes from the foundation in which you stand.
Kristie knows that on days where she feels like she has had enough, she can still stand because she chose a solid foundation in her faith. It is faith in a God who provides the most joy in what seems to be the most difficult of situations and shines an example of His love through her life. God often uses the broken to do His best work because oftentimes the broken are already asking for His guidance through prayer. No doubt this is Kristie.
At the end of the day, she can look back and thank God she was blessed with another and thankful for the strength to endure. Soon enough the day will start again and she may be tempted to wonder “what if” but she can be assured she will remember why she wouldn’t want to be anywhere else.