Max - Sam's Story

2016 began with great joy as my husband and I celebrated our first pregnancy - one that quickly ended in miscarriage on January 14th, around 7/8 weeks. I had never felt devastation, disappointment, and pain like I experienced over that next several weeks as I grieved a child I had never known.

A few months later, we were again expecting. At 12 weeks, we learned that we were having a son and that he likely had Down Syndrome. We were overwhelmed by fear of the unknown and sadness for what we thought would be a difficult life for our son. As we waited for additional scans to confirm whether or not he did have DS, we felt that we were living in a sort of in-between place. We didn’t know whether to hope for and expect a “normal” child, or if we should start preparing for a new normal we had never asked for. Around 20 weeks, we got that confirmation – our son, Max, had Down Syndrome.

Over the months that followed we began reading, researching, and preparing to be the parents of a child with special needs. And we got excited. We were genuinely looking forward to everything that Max and his extra chromosome was going to add to our life. In addition to DS, Max was diagnosed with two small holes in his heart that we monitored throughout my pregnancy.

Then, at 30 weeks, after a 3D ultrasound that I requested because I just wanted one normal ultrasound where no one talked about what was wrong with Max but simply oohed and aahed over how cute he was, we learned that he had fluid in his abdomen and severe swelling on his neck and face, a condition called hydrops. Despite the very bleak prognosis I discovered on google, our doctors were extremely hopeful that Max’s issues would be easily treatable after what would likely be an early birth.

max ultrasound

On December 27, at 34 weeks, during a routine appointment with our perinatologist we were told that was the day that we would meet our son. As we headed to the hospital, Spencer and I were anxious, excited, and trying to wrap our minds around what was about to happen. The next thing I knew, our midwife was praying over us in the room with our parents before wheeling me off for a csection.

Maxwell Spencer Martin was born at 4:14 pm and went home to be with Jesus moments later. Our sweet boy never took a breath on his own. As I laid on the operating table being sewn back up, I listened to the team of doctors try desperately to resuscitate my son. While deep grief and overwhelming sadness followed, my initial reaction upon realizing that my son would die, was strangely peaceful, a sweet gift from the Lord on my darkest day.

One of the most defining moments of that entire day was when my husband chose to go tell our families about the unexpected loss of Max. He didn’t have to; the doctors and nurses all offered to deliver the news for us, but Spencer knew that he didn’t want to miss the opportunity to lead our families into this grief with us. And as friends and extended family poured into our hospital room a little later, Spencer greeted them each with a smile, a hug, and the opportunity to hold and love on our son. As we celebrated Max’s far too brief life that night, we passed him back and forth, kissed and hugged him, and anointed his precious face with tears. I have never felt such a commingling of devastation, hope, and love as in that room.

As the mother of two children I will never watch grow up, my perspective on motherhood has been rocked. After my miscarriage, I struggled fiercely with the fact that I felt like a mom, but I had nothing to show for it. No one who passed me on the street could see my motherhood, but I felt it, deep in my bones.

And here I am again. My only experience with motherhood has been loss, but I am still a mother - a mother marked by a great love.

I will never forget the way my own mom gave words to my experience. She reminded me that as a parent, all you want in the world is for your children to be spared pain, and that you would gladly take their pain as your own if you could. Then she pointed out that Max never experienced even a moment of pain. He went from the safety and security of my womb, straight into the arms of Jesus. He never felt the effects of his health problems or the emotional strain of being different or less-than because of his Down Syndrome. Spencer and I had taken on all of his pain, while our child had been spared. In that short time, we had experienced the fullness of parenthood in a way that others never would.

Max taught us more about love, perseverance, and acceptance in his 8 months than I had learned in my entire 27 years before him. And as difficult and painful as this road is, I am thankful for the woman I have become because of my children. I am thankful for the way my marriage has grown deep roots through these storms. I am thankful that I can stand firmly on the truth of God’s goodness despite my circumstances. And I am thankful that I get to call myself Max’s mom.