11 months…Jack’s basket.

Jack’s basket 

I have had a chance to reflect and process Jack’s birth and the time we spent in the hospital. Many of the memories are positive ones.  But I can not forget the negative ones either. From the way the diagnosis was delivered to the awkward pregnant nurse that was assigned to my room on the last day. I felt like I had to say, “Honey, it’s okay.  More than likely this won’t happen to you.”  I told my sister that in all of the days that we had stayed there, she was the only one that acted distant and I wondered if that was how it was going to be when we left our cocoon and headed into the ‘real world’. Why would you assign an about-to-give-birth nurse to the room where the family just received this unexpected news?  Thankfully, God wrangled my emotions, and I asked her all the exciting questions about her meeting her little girl, where she was delivering, if she had other children, and sent her off with encouraging words.  Glad someone could make the situation less awkward. 

Thankfully I am able to move past the hard parts of our birth story, but I am saddened to learn that numerous families experience a traumatic way of how the diagnosis is given.  One friend said that while her husband was sleeping on the couch, they came in and told her.  Two weeks ago, I met with a mom and she explained that the minute she delivered her daughter, they brought her over to the warmer because she was a few weeks early.  Immediately after she got whisked away to the warmer, without even getting a chance to see or hold her precious baby, the nurse practitioner announced, “This baby has Down syndrome and needs to go to the NICU immediately!”  Not only did this family experience this heartbreaking event, she told me that she felt like they were treated like they had the plague.  My heart hurts hearing this and even more when I realize it’s very common.   

I was mentioning to Chris that with Jack’s 1st birthday approaching, I wanted to bring something to the hospital.  With being there for almost five days, many of the staff members expressed that Jack made an impact on them.  I am assuming many of them might wonder, what ever happened to that family…the one that got the unexpected news. My thoughts were leaning towards flowers but the more I thought about the emotions and interactions we had during our stay, I was thinking something bigger and more meaningful.  For us, for them, for families that have a child with Ds, and for a family that only God knows will be given the same news at birth…  

The day after Jack was born I had to ask for information on Down syndrome and someone came in with a white binder that was titled, Down Comforter. It was an outdated binder filled with general information on Down syndrome including delays our child will experience cognitively and physically, and a bunch of blurry medical information that scared the crap out of me. What if a family would be congratulated and presented with a gift?  What if that set the tone, a chance to celebrate a beautiful baby?

I have kept in contact with one of the staff members and I asked her if she would be willing to talk to her manager about an idea I had. To celebrate Jack’s birthday and life, I was hoping to create a basket and have it given to the next family that will get a diagnosis of Down syndrome at birth.  The basket will contain the following items: a personalized letter and picture from our family and two others that are raising their children with Ds, Jack’s favorite rattle, a couple toys from our PT (she wanted to donate a few toys after she heard of the idea…love her), and an adorable onesie for the new baby.  I know that the family might not be ready to accept this gift at first, but to hear the news, “CONGRATULATIONS” will be something they reflect and thankful for when their child steals their heart.  To get this gift and read of families thriving with children with Down syndrome, I am hopeful this will be the first of many of the unexpected blessings that their child will bring them.

I got a call back from her the next day and she said that her manager responded saying that the hospital would be honored to be able to give Jack’s basket to another family.  I asked how many babies were diagnosed last year and she reported with the number two.  So…we will be delivering two of Jack’s baskets, the day before his 1st birthday!  

As we finished the conversation on the phone…she asked, “Would you ever be interested in coming to a staff meeting and sharing a family’s perspective of receiving a diagnosis at birth?” I can not express how confidently I answered, “Absolutely, I would LOVE to do that.”