I was engrossed in one of those deep conversations with my teenage daughter—the kind of conversation that occurs between two best friends about how we live life and make choices. Ultimately it was about facing reality—a reality that includes hardship, tears and worry, and also sparks growth, fulfillment and strength.
I ventured deep into the recesses of my heart to share with my daughter my most raw experience of facing reality—an experience that drastically changed my life, and hers as well.
Ultimately, it was about facing realityI told her about the day I found out about the complications with my pregnancy, and subsequently, with the very precious baby kicking within me.
I told her about my initial feelings of fear, sadness, loss, anger, resentment, wonder, helplessness, hopelessness and pain.
I talked about how I confronted this reality at the time, and how there is a place for such deep, incredulous emotions. But, I told her, there is also a way to shift these feelings so that you can step forward in your life.
I will never forget the day that I made this internal shift, taking my tiny tiptoe of a step forward, on ground that I felt would certainly swallow me up in the depths of despair.
It was when I stood there, in the NICU ward, looking at my baby, hooked up to monitors, oxygen and constantly beeping machines, only minutes after his surgery at a mere nine hours old.
I stood there with my heart shattered into pieces, into shards with deep-cutting edges, each one a different emotion, and all of them bound together by the invisible string of a mother’s endless love.
And that is where my deeper-than-rock-bottom low raised me up.
I closed my eyes and let the tears stream down my cheeks.
Dear G‑d, I have a deal to make. Please. Please G‑d, I cried. Please help me leave this nightmare and take my baby home. I promise that I will handle this with a smile. I will be grateful for this gift, and I will show you, each and every day. I will show you that I can smile and laugh. Just please let my baby be OK.
And I did leave that nightmare behind. I saw my prayer answered with miracles. And I accepted my reality. Not a reality of despair that would take me no further than those incessant beeping machines assessing every moment of life and vitality. Rather, I accepted a reality that would allow me to really live, to love and to be grateful. A reality that would welcome blessings, laughter and growth. A reality that left those beeping machines behind.
It was a risk I took, “unplugging” myself long before we left the nightmare of the NICU ward, taking that deep, invigorating breath, and putting aside the the reality of pain to focus on what I needed to do to survive.
My teenage daughter looked at me with her deep brown eyes, and I saw her taking in each word I shared.
Our Chaim Boruch, I explained, is only as incredible as he is because of our attitude as a family. He can sit, crawl, stand, walk, eat, play and love only because we believe in him, only because we transformed our despair into the luminous, passionate and positive emotions of gratitude, faith and strength.
Where would we be if I had returned home from my nightmare in the NICU ward and turned our family life into a continuous nightmare? Where would we be if I infused our days with anger, depression, sadness and resentment?
You see, I told my dear daughter, we have a choice. We can accept reality, feel the hard, tugging emotions, and then lift up our heads, wipe our tears and smile.
Hard? Yes. Impossible? No.
My daughter smiled. She understood.
And then, after a moment of silence, she said, “Well, what’s so bad about having a child with a disability anyway?”
Hard? Yes. Impossible? No.And at that moment, I let out a breath I had taken eight years earlier, unknowingly holding it deep within my chest and lungs all that time. At that moment, I felt I had made the home run of a lifetime. I had crossed the finish line in my own endurance race.
In my daughter’s words, I received the gift of knowing that I had indeed changed my reality, not only for myself, but for my entire family, to the point that my children see more beauty and gratitude than challenge.
My eyes filled with tears, and I thanked my daughter for this gift that I didn’t even know I needed.
“My dear daughter,” I said, “now do you understand that your reality is spacious? That whatever challenges you face, there is room to feel very real, often difficult, emotions? And there is also room to choose your attitude and your mindset. To choose to work hard, to grow from challenge, and to decide who you want to be at the end of the game.”
(Author’s note: This blog post reflects my own personal experience. Raising a child with disabilities evokes many different experiences and fluctuating emotions, which all deserve to be honored and respected.)