The journey

They say that it takes a village. I am thankful for our village.

I never realized how much support we have. Call it self-centered, blind, what you will, but I just didn’t realize.

Since the diagnosis, we have been taken care of by our community. We have had food deliveries and frozen meals. We have had handmade blankets and hats sent to us. We’ve received cards and flowers and potted plants. A friend sent us a huge Omaha steak package with multiple frozen meals. We’ve had offers of play dates for the girls, car rides to and from school, friends that offer to keep our kids whenever we need them. Our family members have buoyed us up with support and love.

I hate trisomy 18. I hate it with all of my soul. And yet, in what is the darkest time of my life, I have been awash in the gifts of others. So many people have done so many kind things for us. So many people know James and love him. Writing this blog has put me in contact with other families that are struggling with trisomy, with losses, with grief. I have made new friends on this journey. These are the gifts of life’s trials.

My eyes have been opened to my own shortcomings – my critical nature, my desire to control. It has shown me those things that really truly matter and those things that don’t. It has made me want to be a better person, a better friend, mother, daughter, wife.

Trisomy 18 has made me want to give to others. I want to be more generous with what we have, to reach out and help others that are grieving or suffering.

Today was my post-partum check with the obstetrician. 6 weeks almost, I cannot fathom it. It seems a year ago. I had to take the questionnaire that they give all mothers to determine if you are depressed and need help. The doctor was concerned. She said that my depression score was high. I explained to her that it was very hard to answer the questions that were asked. Do I feel hopeless sometimes? Of course I do. Do I cry? Of course I do.

I had to explain to her that these are dips in the course of a rocky road. But what I’ve realized is that even with this struggle, this pain, this anxiety – life is still so beautiful. I still get to wake up every day and see my beautiful children – all 3 of them. I still get to breathe the fresh, fall-like air into my lungs. I get to eat ice cream. I get to touch my husband. Life is a gift. Life is so beautiful – even with pain and hardship. Everything has changed and yet, nothing has changed.

Every day now, I get up and that knot in my chest is there for a brief time. Sometimes, I try to see into the murky future. My anxiety worsens. Then I take a deep breath and I remember – life is beautiful. I take each day as the gift that it is – a gift with my family – a gift of time.



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