You are not alone. (Guest post)
The following is a guest post from Heather K., a parent volunteer that delivers Jack’s Baskets to new families. Read her perspective of seeing families soon after they have received their child’s diagnosis and the impact of the work we are doing. Thank you, Heather.
I’d like to tell you about my experience serving my community. I am so privileged to deliver welcome baskets for Jack’s Basket, a nonprofit dedicated to celebrating the life of every child born with Down syndrome.
This is sacred work.
I don’t know how to explain what this time feels like, and I imagine any of you who have welcomed a newborn can attest to the incredible vulnerability and fragility of this space. Imagine adding to this energy words that speak to a crushing inevitability that hasn’t even been proven.
Your child will be this.
Your child will be that.
Heavy, global generalizations that leave you wondering and praying if the uniqueness of your baby will prevail against such prognostications. A time when bonding and dreaming and celebrating should be central. A time sometimes disrupted with uncertainty, fear and trajectories of a future that feels void of joy.
I join a group of mothers who show up to tell a different story, offer a different narrative if needed. We park in dirty, inconvenient parking lots and walk hospital labyrinths. We wash our hands over and over again. We navigate neighborhoods. We trudge through rain, cold, snow, sweltering temperatures, protecting a powerful gift; a simple basket that holds an invitation of welcome and support. These baskets are one part of what we bring- we also carry our own knowing, hope and celebration. You’ll find us in NICUs, hospital rooms and homes. Friday evenings or Sunday mornings- whenever the call comes that another little one has arrived. Another family to greet. Another opportunity to shape and change any negative message. We hold hands, give hugs, assure and affirm. We empathize and hold space for a new normal sinking in. We say welcome over and over again. We see the beautiful child before us and celebrate their living, their being. We bear witness to the possibility and the joy.
We try hard not to talk about medical needs or our children. This is very important. We simply bring an invitation to join us in believing in a new and promising reality. Every future, just like every child, is not the same.
You are not alone.
Your feelings are okay.
Your baby will delight and amaze you.
You know your child best.
Your child’s gifts are unique, brilliant and unfolding.
Your beautiful baby is greater than the conditions they may be experiencing.
Here are resources.
Enjoy your little one and allow this transformative journey its place.
Parenting is about meeting our children where they are. You will meet your child’s needs perfectly and powerfully. You know your child best.
We have been where you are.
You are not alone.
I have often arrived to dullness and tears. To stiff upper lips and eyes filled with fear. If my work is done, I leave behind laughter, new possibility and reimagining. Pride and delight. Deeper bonding and confidence. Welcome. At minimum, hope.
I have heard,
“You are the first positive experience we have had.”
“Is it really possibly that my baby could do this?”
“Thank you for helping us know this reality.”
“The nurse told us through the door that our baby had Down syndrome and left. We were so angry and afraid. Then you (Jack’s Basket) walked through the door.”
“I didn’t know we could hope for this. Now I do.”
If you told me three years ago this would be part of my service ministry, I would have not believed you. Now I am so grateful to know this love and experience. To be entrusted with the delicate experience of offering such gentle, loving and powerful redefinition.
Every family deserves the right to celebrate the life of their child and believe in their gifts, capabilities and unrealized potential.
Writer’s Note: Join us in changing the narrative. Jack’s Basket founder, Carissa Carroll, is dedicating her talents and vision to medical outreach. Ask her to come and talk to your medical teams, hospital social workers and clinics. Help us not arrive to families to undo the damage of a dire and often prematurely predictive prognosis of their baby’s future. To learn more, please visit. https://www.jacksbasket.org/
2 Comments
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Rosemary
Heather, if someone like you had been there when Patrick was born, I could have celebrated him every day of his life, instead of spending some of the first ones in despair!
Louise
Thank you, Heather, for this life affirming work that you do. I appreciate so much the warmth and empathy that peeks between the lines of your writing. You are truly changing lives for the better!