Fifteen years ago, a spirited baby girl, full of thick chestnut curls, entered our lives with a wail that could fill a room. When we shared her name with the doctor, he remarked, “Sophie is far too gentle a name for such a boisterous little one.”
Just six weeks later, while cradling my daughter, an overwhelming sense of dread washed over me. It was an electric sensation that surged from my heart and settled in the pit of my stomach. She wasn’t making eye contact. That alone was enough for me to realize that something was deeply amiss with my otherwise perfect child.
That moment marked a significant turning point in our lives.
I often think about how comforting it would be if the strong mother I’ve become could reach back and reassure the scared woman I once was. If only I could send a letter back in time:
Dear Sophie’s Mom,
Your instincts are spot on. There is indeed something concerning about your beautiful daughter. Many will try to assure you that your worries stem from being an anxious parent, suggesting that medication might help you relax and enjoy your family. While doctors may acknowledge your observations, they might downplay their significance.
Your journey will take you through numerous consultations and evaluations in search of a diagnosis, and answers may remain elusive. Nevertheless, believe it or not, you will still find ways to support her.
Always trust your intuition. If you sense something is off, it likely is.
Be thankful for your partner—his unwavering support will be crucial. There will be days when it feels like you two are the only ones who truly understand the challenges your daughter faces.
You will have the privilege of collaborating with exceptional educators and therapists who will aid Sophie in achieving milestones that others deemed unattainable. Their guidance will be invaluable when you encounter conflicting advice from medical professionals. You’ll need trusted voices to help you discern when to dismiss a prognosis and when to confront the reality ahead.
Those you expect to lean on may let you down. Remember, friends and family genuinely want what’s best for you and your children, but they might struggle to accept the profound challenges your daughter faces. This discomfort can lead to distancing behavior.
Understand that you, too, will undergo significant changes. Everyday worries may start to seem trivial. You might not always be the most pleasant company, and that’s okay. Allow yourself the grace to process. Seek out friendships with those who have shared similar experiences, and don’t hesitate to reach out for professional support when necessary.
Be cautious about assuming that onlookers judging you or your daughter have negative intentions. You will discover that many people are incredibly kind and empathetic. While there will always be those who lack sensitivity, you will also witness profound acts of goodwill that reaffirm the best in humanity.
Ensure your other children have opportunities for quality time with you and their father. Encourage them to share their feelings and fears. Revel in the family dynamic you create together.
Sophie is a remarkable child, with her own unique journey. Watching her develop will feel like witnessing a miracle, albeit one that tests your patience. That’s perfectly normal.
While it’s wise to plan for the future, avoid making assumptions. Sophie, at 15, is accomplishing feats that few imagined possible. The future remains unwritten.
It’s natural to feel frustration toward her at times; you’re not a saint, and neither is she, thank goodness. She will bicker with her siblings and raid the pantry for treats. Expect chaos, and embrace it. Cry when necessary, laugh whenever possible, and marvel at her achievements. Express frustration when warranted; it’s healthy for both of you.
Whenever possible, treat her like a typical child. Don’t shy away from setting boundaries. No one appreciates a spoiled child, regardless of their circumstances.
Remember, it’s not Sophie’s responsibility to fulfill the dreams you had for her. Every child, irrespective of their challenges, is their own person. Allow her the freedom to become the Sophie she is meant to be, and grant yourself the permission to embrace the family you are destined to be. Resist dwelling on “what if” scenarios; they are unproductive and will not lead you toward healing.
You will be amazed by the family dynamic that you and your partner will cultivate.
This article was originally published on Jan. 8, 2016.
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