I have only been the mom of Bernadette for 15 months. In such a short amount of time, we have lived a lot of life. More than I ever did with my other daughters. Being a mom of a special needs daughter has brought new meaning to my own life and has shown me life through a different lens. The highs I experience seem more extreme and in the same way the lows I experience seem so much lower.
How could that be? I think for starters, the moments of celebration have been the result of tension, turmoil, and hard. Let me walk you through some memories.
The moment Bernadette was born was one of the most joyful moments I have ever experienced. She was here. She was breathing even if her skin was blue. It never crossed my mind during my other healthy typical pregnancies that there wouldn’t be a living baby on the other side of labor. It was however, a thought at the forefront of my mind when I was pregnant with Bernadette. I will never forget the appointment with one of the perinatologists who looked me straight in the eyes and told me without as much of a tender eye, that there was a high probability my baby would be a stillborn, especially if we didn’t induce at 39 weeks. I couldn’t believe the words coming out of her mouth and for the last half of the pregnancy I feared Bernadette would not even make it to delivery. Every time I heard her heartbeat I thanked Jesus she was still living. That little muffled heartbeat I heard at every appointment was one of the sweetest sounds to my soul. You could imagine that after all of that, seeing her tiny blue body and holding her for those brief few seconds was one of the biggest reasons to celebrate.
The lows followed quickly after when David and I were told Bernadette had another heart defect, an emergent one, requiring surgery sooner than we had ever anticipated. There was a pit in my stomach, one that didn’t leave for months but was especially strong in the days immediately following her birth as we headed back and forth to visits with the cardiologist. Tears were barely held back as they constantly threatened to escape at the any given second. The lows. Heartbreak. Immense sadness flowing throughout my bones as I entered into unfamiliar and painful territory as I watched my baby endure two heart surgeries and fight hard for her life in between.
The day we left those hospital walls was by far one of the greatest days of my life. Of course there was worry and fear heading home, the anxiety gripped me and threatened to never let go. She had been closely monitored for two months with specialists ready and available in less than a moments notice. I walked out, cradling her tiny body in my arms. I experienced one of the greatest joys that day. My inner most being rejoiced and celebrated as I walked her proudly through the automatic doors and buckled her into her carseat.
RSV came that spring with a vengeance and again we found ourselves in the ICU. More unknown. More waiting, watching, and praying. I found myself sliding back down into the low valleys, uncertain I would be leaving that hospital with my baby cuddled in my arms.
God is so so gracious. He held me close as I walked through those valleys. He brought comfort to my heart as I sat there unable to do anything to help her sick little body as she fought through RSV. Slowly but surely, her body began to heal.
There is a bell that hangs on the wall in that hospital. Set by the nurses station, close to the double doors, the bell is rung by parents and kids celebrating their strength as they leave. David and I had gathered our belongings from our room and with Bernadette cradled in my arms safe and sound free from all IV’s and monitors, we rang that bell. Tears streamed down my cheeks as my mind briefly flashed back to the lowest point over a week earlier when we were rushed by ambulance down to the hospital. I reached up for that cord and gently rang the bell as my lips turned upward smiling with gratitude.
Life at home was finally starting to get into a rhythm. Bernadette began her weekly therapies at home and we continued to work through feeding tubes and weans, moving onward and upward. As she began to progress, I found myself full of tears of pure joy watching her grow. Her first smiles, her first little giggles, eating purée, army crawling, sitting up. All the things babies do felt like such huge accomplishments.
What I have found to be true through this journey we are on for me is that the lowest of lows that bring painful tears and sadness are often followed by highs that bring joy and celebration and visa versa. Feeling those extremes goes both ways.
I think it can feel even more exaggerated when you know how much work goes into the success of your child. I have been learning the great importance of celebrating Bernadette’s victory moments. I know the hard work that goes into getting her to where she is at because I am the one that is putting the hard work in day in and day out. I’m the one that cries tears of pain when she won’t eat knowing how closely the doctors are watching her weight but I am also the one that cries tears of pure joy when she eats an entire pouch of puree. I’m there on the days I shrug my shoulders in defeat knowing that the physical therapist will be lucky if she gets five minutes of work in before Bernadette falls apart. I am also there the day she sits up on her own for the first time ever. And when you can look back and remember the work that has gone into her success you know how hard you celebrate.
So my friends, whether you mom typicals or those with different abilities, let’s celebrate all of their accomplishments and remember that God has created all of these beautiful children unique, according to His plan for each of their lives.
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