Growing Some Love

As the Holy Spirit prompted us to celebrate Vivien’s life, I knew I needed to learn and understand more of what was in store for us. Todd had already been visiting websites, blogs, support groups and doing research, but I had only briefly looked into it. It was so difficult emotionally that I decided to set it aside until we knew for sure, rather than getting worried and worked up about it when it might not be in our future. But now that we had a diagnosis, I began in earnest. In researching, I began to be overwhelmed with the magnitude of decisions that would need to be made, should she live through birth. I will write more about some of the controversy surrounding t-18 in the medical community later. As I researched though and started opening up my heart to learn more about babies and children with t-18, God began to connect us with many parents.

We wrote a letter to our friends and family and sent it out via e-mail. Then a couple of days later we put the letter on our blog and announced it on Facebook. The response to our letter was overwhelming. People were so loving and supportive and kind. So many people reached out to us in so many ways, but one of the best was when they would connect us families they knew who had had babies or children diagnosed with t-18. I’ve spent hours messaging, talking on the phone and e-mailing parents and asking about their stories. We have learned both from those whose babies have died, as well as from those whose children are living with t-18 . In the cases of the babies who died, almost all were beautiful stories, despite the outcome and each mom spoke with fondness and love for the experience they went through, despite the difficulty.

In the cases of those whose babies have lived or are living children, I felt like truly, God was “growing some love” in my heart for these children. I will be honest, he very first time I went on a t-18 website, it was difficult to look at the pictures and know that Vivien would be different. But the more I have delved into the lives of these children and their families, the more I have grown to love their beauty. It is amazing to me, that though they can’t talk or walk, how happy they are, how interactive they are and how much joy and love the parents both give to and receive from their children. Their facebook pages are full of photos of smiling happy kids. Here are two little girls whose parents’ we've been in contact with that we've grown to love.

Lilliana (3 yrs)

Abigail (4 Yrs)

At the same time we are learning about the incredible amount of time, energy and work that goes along with a child living with trisomy 18. While there are many common issues, there is quite a range of problems that can come up. If Vivien lives, it will truly be like caring for a long term infant,with all the joys and hardships that go along with it. An infant who at her highest mental capacity will be able to reach about 18 months and will have many health needs in addition to the normal caring for a baby. There is a lot of tweaking of medicines and figuring out what works best for each child. Some of them do not ever sleep through the night although some do. In all honesty, again sometimes the “work” of it still scares me, yet at the same time, because of seeing documentaries and hearing stories on broadcasts reading blog posts and pouring over facebook groups, I know that they bring so much life and joy to a family as well.

One of the blogs that has been especially meaningful to us has been “I Will Carry You” written by Alesia Yusoko about her little 2 year old Nora. We started following her life reading the daily posts and enjoying their love for her. It was easy to fall in love with her ourselves so it was difficult to watch the journey for her unfold in the last couple of weeks when she was admitted into the hospital with many complications and died a week ago on June 3rd. The day she died as they were waiting and praying, her mother wrote on her facebook page, “Pleeeaasee pray!!” and then “Things are very very serious. God has a plan here and we have to TRUST Him NO MATTER WHAT!!!!!!! He has a plan in all of the f%;king bulls@3t of this world. I TRUST IN HIM!!!!!!!!!!!!!” For some reason the angst, the intensity of the emotional turmoil that she was going through coupled with the absolute declaration of her trust that God was at work hit me in such a strong way and made me love her, and Nora so much. Seeing how she trusted God with the depths of her pain and knowing that she could come to him in the ugliness of the moment was so beautiful to me. I know that He is trustworthy in whatever comes along with Vivien.

We have also tried to parent our kids well. They have been asking lots of questions about what she will and will not be able to do if she lives. Some that we couldn't answer we were able to ask parents and it has been wonderful to be able to receive answers. We have shown them pictures and videos of kids diagnosed with t-18 as we wanted them to be prepared. They continue to process and grieve and ask questions.

A few weeks ago I was listening online a program and there was a baby crying in the background. Silas was in the kitchen and he asked me why the baby was crying and I said it was because she needed food or she might die and they were telling us on the program how we could help. He said “oh” and then went on with what he was doing, but a few moments later he appeared in front of me. I looked at his face and I could tell he was in deep distress. I thought it had to do with a little argument he’d had with Maggie earlier, but it wasn’t. I pulled him close and asked him what was wrong and as I did, he burst into tears and started sobbing, “I don’t want our baby to die.” I held him and prayed for him and with him and told him that God is in charge and that we can pray and ask Him to let her live. He settled down and was ok, but I know that it is affecting all of our children deeply.

Lucie has taken to greeting “Vivie” as well as me when I come in and patting my stomach. It’s funny how nicknames just sort of come out and Lucie and Maggie have both called her “Vivie” often. The other day Lucie asked me to come here. She said, “I want to tell Vivie something.” She had written her a little letter and drawn her a picture. I loved it.

Todd and I are continuing to process too. I know that sometimes when I am struggling my rather idolatrous default is thinking about vacations. I know that vacations aren’t bad in and of themselves and Todd and I even took a little getaway for an overnight at a hotel sans kids in Seattle a few weeks ago thanks to the Grandparents. We don’t know what the future holds and could be our last getaway for a long time. We walked around Pike Place, visited Storyville Coffee, enjoyed writing and relaxing and talking and eating by the waterfront. My “happy place” is dreaming of where I can go. I asked Todd, “What is your happy place, or your default when you want to feel better?” He grinned at me and I should have guessed. “Cleaning the garage,” he confessed. He has been out in the garage cleaning and building and trying to make things organized. This is a very practical “happy place” – much more so than mine. We both want to get our house very streamlined and organized before Vivien arrives. But Todd has always found relaxation in yard work, building and just manual labor of sorts. Needless to say, our garage has been getting quite spotless as of late.

In the meantime as we are learning and growing in love for Vivien, for this little girl we haven’t yet met, there is a part of me that knows the more I love, and the longer she lives, the harder it will be to let her go when the time comes, whether it is many years, or just a few days. We want her to stay with us and stabilize and be healthy, but at the same time the more we invest in her, I know the more we will love her and the more difficult it will be if and when she goes to heaven.

Rick Santorum ran for president in the last election. He has little girl named Bella with t-18, who we have also fallen in love with. He spoke about how in the first few months of Bella’s life, he was sort of the rock and the strong one in the family. While everyone else was emotionally falling apart he was ok. But he realized about 5 months into her life that he wasn’t letting himself fully love her, out of fear and belief that she would die. After this realization he chose to open up his heart to love her well. She turned 6 in May and in a recent radio interview I listened to, the love and joy that that little girl brings their family and the way that he and his wife Karen spoke of Bella is so beautiful.

The problem with “growing some love” is that as C.S. Lewis says – it is vulnerable. I know that this is true and I am trying to be willing to “go there” with Jesus in my love for Vivien. I will leave you with this quote from Lewis that has been one of my favorites for years, and is more meaningful now.

“There is no safe investment. To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable” – To love at all is to be vulnerable.

Lord Jesus, let us be willing to go to that vulnerable place and love Vivien well. I know that despite the pain vulnerability brings; the love will be worth it.

Next….”Doctors, Nurses and Controversy – Oh My!”