By Cindy Fisher
I have often wondered whether my marriage could survive having a child with special needs. It must be a strain on a family. However, when I heard that Chris and Jodi had Alea, this is going to sound weird, but it felt right. If any family was going to be able to help one of God’s choices spirits, it would be the Garners. They are such positive people, and they have two older girls who could be of great comfort to their parents and little protectors of Alea. I can already see the older girls ready to go to battle against any other kid who may say something mean to sweet Alea as she grows older and enters school.
Maybe you’re like me, and basically the only exposure to Down syndrome you’ve had has been seeing a Down syndrome child in the halls of the public school you attended or through a movie or television show.
These next set of questions are harder to ask, and probably harder for Chris to answer.
How long after Alea was born did you realize there was something different about the way she looked? Did you suspect it was Down syndrome?
First of all Cindy let me thank you for the kind words.
When Alea was born it was kind-of chaotic in the delivery room. Right after she was born I went to take her picture and realized that we had left the camera in the car. I ran out to get it. I returned to snap the picture and found the nurses all busy around her. They were worried about the way she was breathing. I snapped a picture, and they rushed her out of the room.
I made sure Jodi was okay, I then went down to check on her. I walked in the door to the nursery and walked over towards her. Her head turned towards me, and she opened her eyes. I knew right then. It wasn’t super obvious, but it immediately entered my mind; “She has Down syndrome.” I asked the nurses if everything was okay, and they confirmed that it was. I dismissed the thought that had entered my mind.
It took them a week to confirm it. When I would go in to see her in the hospital, I would talk myself out of her diagnosis. It is kind-of silly looking back on it now. I would tell myself that her eyes were still swollen from delivery (which they were). I would tell myself that since she didn’t have the simian crease in her hands she didn’t have it. It was an interesting week mentally. I fought those thoughts even though I knew full and well I loved her beyond measure.
Take us through those moments after you were informed that Alea had Down syndrome. Was it similar to a grieving process: Denial, anger, bargaining, depression, and then acceptance? Have you found that your mind goes through this cycle many times, even now?
Jodi and my mom had gone to see Alea at the hospital before my mom went back home after helping us for a few days. They walked in and Jodi was on the phone with someone. My mom had that look on her face. The look you get after hearing bad news. I asked her what was wrong, and she just looked at Jodi and said Jodi could tell me. I asked Jodi to get off the phone. It seemed like it took her forever. I asked her over and over. In reality it was probably a minute, and I was probably a little rude. Once she got off the phone, she told me the nurse practitioner had told her it was time to just accept the fact that she had Ds and to move forward. The results weren’t back, but it was time to accept it. She said there was certain care that Alea needed, and they couldn’t move forward with it until we understood and accepted that she had Ds. The way we were told still bugs me a little, especially because there never was any change in her care or urgent procedures that needed to take place.
I felt fear, I guess. Anger probably. I know I was angry at the nurse practitioner and I channeled all of my anger into that. My frustration was evident as I asked my mom and Jodi how they could know without the test results. At that point EC came in and asked what was wrong. When we told her she said, “So. I will still love her.” I then went to my room and cried for a few minutes.
Soon after that I had to take my mom to Salt Lake to meet my brother who would be taking her back to Idaho. After a while of driving in silence, I hit a point that embarrasses me the most looking back. I said to my mom, “At some point the Lord needs to figure out that Jodi has been through enough.” Ugh. So ya, I guess you could say I was mad.
I don’t really liken it to grieving, although it probably is the same. After the initial 24 hours or so it wasn’t a constant process. There were moments where it would hit me, and I would feel that fear or worry for Alea, but they were only moments. I still worry for her, but it is different now. Not sure how to explain.
In a letter I wrote to my family I said, “The hardest thing for me with this diagnosis, is that people may feel sad or sorry for us. This is not the time for sorrow; we have had our share of sorrow. This is a time to celebrate this new life that has come to our home to teach us to be more Christlike.” We deal with grief on a daily basis for people who are no longer with us, so maybe that is why it is difficult for me to compare the feelings of uncertainty we feel with Alea to feelings of grief.
Who did you seek out first for emotional support after learning about Alea?
I sought out Jodi. She is such a strength. After Jodi, I probably sought the advice of my parents. I have been that way since I was young, and they always have sound advice. I have been blessed with goodly parents.
Tell us about some of the people who have helped you look at the situation in a new light, or who has been a guiding help for your family? What has been some good advice or counsel you have received concerning Down syndrome? What new insights have you had that you could share with us?
This is a difficult question to answer. It amazes me the immediate support we received and continue to receive from other parents with children who have Down syndrome. I have a cousin who has Down syndrome. I called my aunt or she called me in the days soon after Alea was born with some sound advice. Everyone who has experience from similar situations has always said that these kids bring so much joy.
It is like anything that is new, though. I served a two-year mission for the LDS church. I remember getting out on my mission with the other 180 young men and women assigned to Belo Horizonte, Brazil, with so much energy, excitement, and perhaps unrealistic expectations. Others who were more seasoned looked at me, I am sure, thinking, “He will learn.” Plato once said, “Wise men talk because they have something to say; fools, because they have to say something.” Being a new parent of a child with Down syndrome, I worry about being in that stage where I have to say something. The entire purpose of this blog is to raise awareness for Down syndrome, but I do worry that those seasoned parents are wondering if I just have to say something.
As far as enlightenment, I think I have gained the most from my ever-evolving world view. As a member of the LDS church, we believe that kids with special needs are God’s most choice sons and daughters. If you stop and think about it, that is quite an honor. I have also been working on a master’s degree for the last year and a half in mental health counseling. The program has helped me be more accepting of all people and of my circumstances, whatever they may be. There have been two books I have recently read that have helped improve my world view. Both Ekhart Tolle’s The Power of Now and Michael Robinson’s Believing Christ have influenced my thinking about the life that presents itself to me each day.
What statement or expression do you wish people would NOT say to you when they learn your child has Down syndrome? What generally was people’s reaction when they heard about Alea’s condition?
“Oh, I am sorry.” That is the worst reaction. For some reason at first I hesitated to tell people, because I was afraid of their reaction. I am not that way now. It will be a challenge for Alea, but it is not something she did wrong. It doesn’t make me mad that people say that; they are doing their best, and I know I didn’t know what to say. For the most part, people congratulate us and cite an experience or two of the wonderful interactions they have had with people who have Down syndrome.