By: Melody Wallace
As Mother’s Day approaches, it brings about many different feelings for many different women. For some, it is the simple joy of receiving flowers or enjoying a nice meal while holding a new baby or boasting a proud belly. For others it’s receiving finger-painted masterpieces and greeting cards of adoration, all while being surrounded by loving children and grandchildren. Yet some women would not mind if this day simply vanished from the calendar for a moment. Some are wishing they could pick up the phone and call their own mothers for advice on life, love, and parenting. There are those whose greatest heart’s desire is to simply hold the title of “Mommy,” if only for a moment. This day however may be the most bittersweet for those mothers that have loved and lost. These mothers will no longer be able to hold their children on this day, but instead will cling tightly to bold color memories that are engraved in their minds and cherish them in their hearts.
Courtney VonGunten is one such mother. When you speak to Courtney you immediately see a beautiful, warm, selfless woman with an incredible love for her children and a wonderful support system. She won’t take any of the credit though. She says she owes it all to her daughter Madelyn, “She makes you a better person. She already worked her magic on me.” Madelyn Rae was born on August 20, 2007. While Courtney was still pregnant she and Madelyn’s father, Ray, went for the ultrasound to find out the sex of the baby. After “what seemed like forever,” the doctor revealed that it appeared Madelyn would be born with a cleft lip. As parents they were able to come to term with this reality and see it as something that could later be fixed. When Madelyn was born, however, their outlook changed. They were hit with an overabundance of large words and diagnoses and informed of all the things that their daughter would never be able to do. “We were devastated,” recalls Courtney after hearing the news. The main diagnosis was that of holoprosencephaly (HPE), a type of birth defect in which the brain does not divide into two separate halves during development as it should. This condition is characterized by a difference in facial features and often a cleft lip or palate. Madelyn was also diagnosed with Chromosome 18p deletion. These two diagnoses often go hand in hand, and both are known to cause a delay in development, speech, and cognitive skills. Some children with similar diagnoses never even make it out of the hospital. Her parents were informed that Madelyn would probably never be able to walk, talk, feed herself, or comprehend information.
As doctors continued to tell Courtney all of the things Madelyn shouldn’t be able to do, she consistently responded with, “But she could.” And that she did. The little girl that shouldn’t have been able to walk did. She used sign language to communicate, fed herself in a high chair, was able to turn off the light switch when asked, and comprehend more than we will ever fathom. Madelyn’s smile was contagious, even “strangers would start smiling” when they saw her. Her brother Maddox was “her biggest fan.” There were many times that Maddox would be offered an opportunity for an activity or an experience and he would turn it down because Madelyn couldn’t participate too. Madelyn was a living example of the saying that hung over her bed, “Every day holds the possibility of a miracle.” She was a miracle, each day of the five and a half years that she spent on this earth.
Although some people may have the misperception that her parents were somehow anticipating this day due to her earlier diagnosis, Courtney says, “The idea of her dying never crossed my mind. I thought, ‘She’s going to live with me forever’…and I loved that thought.” Just like anyone might imagine, getting the phone call that her daughter was gone was the worst moment in Courtney’s life. The memories of the days following are blurred with images of sleeping by her daughter in the funeral home one last time, doing her hair for visitation, and laying by her gravesite to be as close to her as possible. Those first few days were indescribable for Courtney, but Easter Sunday brought with it a new set of blessings. “I can’t describe it,” Courtney recalls, “but I knew she was going to be okay.” No longer would Madelyn have to endure the numerous injections that she received each night or the frustration of trying to communicate what her body could not interpret. Courtney has renewed strength in the fact that, “she never cried and never frowned…[I realized] she never wanted us to.”
The amount of love and support displayed for Courtney and her family over the last few weeks has been overwhelming. During visitation, the line was so long that it extended past the door. An extra room had to be used to house the overflow of “truly heartfelt gifts.” Not to mention the phone calls, Facebook posts, and inbox messages from close friends and family members, as well as perfect strangers. As far as the outpouring of support after losing Madelyn, Courtney said that you do not truly realize “how many people love you” or “how many people she touched.”
Moving forward, Courtney has gone back to work, and on with life, the best that she can. She said that sometimes people aren’t sure how to act around her and others appear more uncomfortable about the subject than she is. The blessing in all of this is that some old friendships and family relationships have been rekindled and renewed throughout this experience. Courtney believes in her heart that Madelyn is now “looking over all of us” and somehow has a hand in the good things that happen.
As far as advice for other mothers, Courtney simply had this to say, “Don’t take it for granted. Hug em’. Kiss em’. Tell em’ you love em’. You never know when you’ll get another chance.” While Courtney will be able to share this coming Mother’s Day with her 8-year-old son Maddox, Courtney will also be saving a special place in her heart to celebrate being Madelyn Rae’s mommy.