Saturday, May 28, 2016

To the Other Mom in the Waiting Room...Please Don't Apologize

Our conversation started out naturally enough. We were both sitting in the waiting room at the pediatrician's office for the Saturday morning clinic for sick children. You were there with your beautiful, 20-month-old daughter who had a rash. I was there with my precious, 10-month-old son who had a yucky sounding cough. I'm sure both of us had things we would have rather been doing on a Saturday morning, but we were making the best of it.

Waiting rooms can often be eerily silent places as people are buried in their smartphones and magazines, or as they simply stare straight ahead, avoiding eye contact with another stranger. I was pleased that you responded well to my initiative to strike up a friendly conversation. We chatted back and forth about our children and made some general small talk as we each waited for our child's name to be called,....

...but then a few simple phrases seemed to change everything...

I mentioned that our family was looking forward to celebrating my oldest child's seventh birthday that weekend. You smiled and said, "Seven? Oh, I bet he loves to help with the baby!"

Now at this point, I had a choice to make. I could smile and move on, or I could be real about the different dynamics our family experiences in this area. I love to talk about my kids, and I love opportunities to help create awareness about Down syndrome, so I decided to be real...

Smiling back at you I started to share, "Well, actually, my son has special needs..."

Before I could go further you quickly interjected, "Oh! I'm sorry!"

I'm always a bit taken aback when people apologize to me concerning my child, but I continued on.

"It's fine. He has Down syndrome, and..."

Once again you cut me off with another sympathetic, "I'm sorry!"

This time I was a little more direct...

"It's nothing to be sorry about. We love him crazy, and he has taught us so much! He's just not at a place yet to be able to help with the baby."

In response you smiled uncomfortably and busied yourself with your daughter. A moment later you picked up a pamphlet from the side table and started to flip through the pages. It was becoming increasingly clear that our friendly conversation had come to an end.

Let me first say...I am not angry with you. I believe you had no ill-intentions, and you were not trying to offend in any way. I am not angry with you, but I am saddened by your response. As I told you, the fact that my son has Down syndrome is nothing to be sorry about. If only you would have allowed me to continue I could have told you why...

I could have told you that my little boy's life is such a precious gift, especially considering that the doctors and nurses in the NICU didn't expect him to survive. I cannot imagine my life without him today.

I could have told you what a little over-comer he is after facing numerous health complications, including open heart surgery, and the fact that he is healthy and thriving today.

I could have told you what a champion he is--working so hard to reach various developmental milestones, and I could have shared with you the incredible celebration that has accompanied each one. I am so proud of him!

I could have told you about his contagious smile, his delightful laughter, and his wholehearted affection. My son carries such joy.

I could have told you about his unique personality, and some of his favorite things that include Elmo, "The Wheels on the Bus," and stuffed animal monkeys.

And yes, I could have told you about the challenges we have faced, but I also could have told you that each one has carried with it an opportunity to learn, grow, and discover the heart of God in brand new ways.

I could have told you that our journey may look different than some (then again, who's life journey ever looks the same), and that it carries its own unique beauty. I would not be the person I am today if I had not had the privilege of walking this road.

I could have told you so much...

...and hopefully your discomfort would have dissolved, and you would have been able to see that my son is not something to apologize for...he is someone of immense value--a good gift I will always treasure!

So, today, as I remember our short encounter, I bless you, and I pray that you will have opportunities in the future to truly see and know the person behind the disability. I promise you that your life will be enriched!

Tuesday, May 17, 2016

Seven Years of Swinging

In less than a week Benjamin will turn seven years old. SEVEN! The time has gone by so quickly, yet this journey into motherhood has felt like it's own little lifetime as well...

Seven years ago today I was bulging with my first baby, bone-weary yet full of anticipation. My emotions were constantly swinging with the fatigue and often chaotic hormones of late-term pregnancy and the joy of knowing I would soon meet this child for whom I had been longing. Seven years ago, though, I was still expecting an early June baby, oblivious to the roller coaster we were about to board in less than a week with an unexpected labor induction and ultimately a Cesarean birth. Seven years ago I did not know that my sweet baby would be fighting for his life from the moment he was pulled from my womb, nor that he carried an extra chromosome. Seven years ago I did not know that my swinging emotions were about to reach brand new heights of heart-wrenching pain and overwhelming joy.

Those first weeks following Benjamin's birth were full of a depth of love I never knew was possible as I soaked in the moments with my child, touching little hands and feet in the NICU crib and finally holding him in my arms after an agonizing nine day wait. Those weeks were full of a depth of pain I had not known before as well, as I watched my small son struggle for his life and tried to process what it would mean to raise a child with Down syndrome. My emotions were in constant swinging motion: I was thankful for the care he was receiving and grateful for the services in place through the Ronald McDonald House and the Hospitality House that enabled me to stay close by. I was resentful that we were in a hospital instead of home, our family separated as Shawn had to return to work in another town, and I was angry that my son was not the healthy, whole baby I had dreamed of welcoming into the world. A close friend gave us wonderful advice during those shaky weeks that became an anchor for my heart, "Celebrate your son every day."

Life eventually found its own rhythm and balance again, though I continued to ride the swing of joy and pain, grief, and celebration. I remember the first time Benjamin used a swing at the playground. He was two years old, still functioning as an infant. It was a beautiful day, and we just had to be outside. I gingerly placed him in the baby swing and began to gently push. As my little son began to swing that day, so did my emotions as I watched a small child close to his age running and playing all over the playground. I felt the pain of his present delays even as I experienced the joy of watching him so obviously enjoying this little outing with Mommy. I realized that the most important thing was that he was having fun, and I soaked in the cuddles and squeals of delight he let out as I held him close that day. 

There were more outings to the playground, some with just the two of us and some with Daddy. Benjamin has always loved the swings. On one particular outing, Shawn started snapping pictures as I pushed our little guy, and captured the perfect shot. We didn't know at the time that this picture would become a life-long favorite and the inspiration for the cover of my first book as I poured out my heart into print form to share our early journey of raising a child with Down syndrome. Knowing others were "swinging" as well in similar circumstances, I hoped that our story could offer some encouragement and comfort.

As we approach this seven year milestone in my son's life, I must say that I am so very proud of him! Benjamin has overcome more in his short life than many have over a life time. He is literally a walking miracle. I have gained more wisdom and experience in parenting him as time has gone by, but I know I have so much more to learn, and there is so much more he has to teach me. I still experience swinging emotions at times: I can feel overwhelmed by big boy diapers and the struggles of trying to effectively communicate with a child who is still non-verbal. I can still feel waves of grief hit unexpectedly with the reality of having a child with special needs and all the challenges that entails. I can confidently say, though, that the joy always outweighs the pain. The hugs, the laughter, the simplicity of my son are gifts in themselves, and I enjoy him so much. I also realize that emotions will always swing, no matter what the circumstances of life. However, truth is constant. 

The truth is that Benjamin was knit together in my womb by the God Who loves him, Who chose him, and Who has a beautiful plan for his life. The truth is that Benjamin is my child, my first born treasure, and I love him with every fiber of my being. The truth is that this sweet little boy will continue to grow and develop as the years go by, and his life is worth celebrating, on his birthday and every day!