Our daughter Alex is 18 today. Of course it’s a monumental moment for her and one we are celebrating as parents too. Yes, it’s a little scary to think about sending her out into the world as an adult but that’s not because we don’t trust Alex. It is because we know how dangerous and painful the world can be.
People often ask us how our older girls have handled being siblings to Carly (12) whose life with disability has consumed so much attention from us and others. While we know we cannot predict what might come out in counseling when she’s 32, Larry and I have always felt a tremendous sense of privilege about raising Alex. Yes, there have been tears over pulled hair and occasional resentment about our “high maintenance life,” but Alex and Erin (who is almost 16) have embraced their sister and their lives in this family with gratitude, hope and vision.
Today, Alex is a young woman who is contagiously influencing her world in many positive ways. In fact, her growing vision for community service was a factor in her college selection for next fall.
As I take this day (and Blog space) to indulge in celebrating Alex, I hope this can be more than a mom’s nostalgic and grateful ponderings. I hope young families enduring the moment-to-moment pressures of raising their children might be reassured that our young people can grow up joyful, strong and influential leaders despite the enormous burdens that having a handicapped sibling can bring.
Alex is a well-rounded young woman who has actively engaged in her academics, athletics, the arts and her faith. From National Honor Society and competitive soccer to school and community theatre productions, band, choir, church worship leading and Bible study, Alex has maintained valued friendships and learned to keep balance even with a very busy schedule.
Alex may be best known for her enthusiastic, positive attitude and love for learning. In 9th grade she was honored with the District Award for “Taking Responsibility for Your Own Learning.” She also has a reputation for being well organized that started when she was only nine months old — she arranged magnetic alphabet letters in color categories on the refrigerator door. This still cracks me up today. She even taught herself to ride a unicycle!
Given that her youngest sister Carly has Angelman Syndrome and many special needs, Alex has grown up in a home environment that has often been physically demanding and emotionally stressful. Nonetheless, she has allowed these circumstances to stretch her. She was only 6 years old when she enthusiastically started helping with Carly’s therapies. Carly’s unexpected progress has come, in part, because her sisters were supportive, creative and persistent.
As a teenager, Alex began working a few hours each week providing respite care. It’s a challenging role to function in your own home with the same expectations given to other staff. Nonetheless, she's appreciated the opportunity and pressed on despite circumstances that were often more than frustrating.
Alex is a deeply sensitive young woman who shows great respect and compassion towards people with disabilities but, more than that, she appreciates individuals for their character and personality without being distracted or intimidated by any physical or cognitive challenges they may have. On a number of occasions throughout her school years, Alex has befriended students with special needs and even helped them in practical ways through their limitations. That kind of respect and inclusiveness comes so naturally to her that she will be a bit offended to see I’ve taken note of it here. Isn’t that the kind of generation we want to see leading the future for families experiencing disabilities — a generation that takes for granted that people with special needs are integral to a life that thrives!
Several years ago I framed a photo of each of my children and hand painted a Bible verse on the matte. I tried to select a verse that I felt reflected some fundamental characteristic about each one of them individually. I am so grateful to see daily evidence of how this verse describes Alex:
My heart, O God, is steadfast; I will sing and make music with all my soul. PSALM 108:1
Thank you, Jesus.
Happy Birthday, Alex!
We love you,
Mom & Dad
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