The following is a guest submission from Elizabeth Mayfield. Her experience with Caleb and the gifts she realized are reminders to us all of what is really important.
“On June 2, 2008, our family’s lives changed forever. We received news that our son had a chromosomal abnormality. We were told that he either had Trisomy 13, 18, or 21. The doctor informed us he had pleura l effusions, a possible VSD, a possible bowel defect, and on his left hand, he only had a thumb. As we left, we were told that if it were 13 or 18 that it would be fatal. I do not think anyone has prayed so hard for the diagnosis of Trisomy 21, but I knew he had a better chance with that diagnosis. On June 12, we received the diagnosis of Down Syndrome with a balanced translocation between chromosomes 1 and 14. I cried for joy, but at the same time I was scared to death but I knew he wold be fine.
My husband and I decided on the name Caleb Michael. the meaning of Caleb is “faithful” and Michael means, “who is like God.” We have a son named Joshua and wanted the name Caleb to go with it. When I first found out I was pregnant I wanted a ‘J’ name, but when we found out his health issues, I didn’t care what his name was. I just wanted him to be okay.
As the summer went on, there were appointments with cardiologists and neonatologists to prepare us for what was to come after his birth. My way of dealing with all of this was to educate myself to the fullest so I could e the best Mom I could before him. I was on the internet, talking to other families with children with Down Syndrome, and reading books. I felt like I had a little control over my life when I was doing that. One of the books I enjoyed reading was ‘Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.’ It told of all the positive things a child with Down Syndrome can bring to your life. As I read the book, I was encouraged. Yes, life would not be easy but the good seemed to outweigh the bad. I couldn’t wait to get my ‘Gift.’
On August 18 I went for a doctor’s appointment and ultrasound. I was told everything seemed to be fine. He weighed in at a little over four pounds and his heartbeat was good. The doctor checked the fluid around his lungs and was a little concerned. He said he would talk to the specialist and see what he thought. On August 21, I noticed his movement being a little less than normal but not a whole lot different, that night I felt very little. The next morning I called the doctor and was told to come in. Caleb was born by c-section later that morning; he lived about twenty minutes. His body had filled with fluid and his heart could not keep up. Our family spent the rest of the day holding him and saying goodbye. I will hold those memories for as long as I live.
After the funeral and the weeks that followed, I felt cheated out of my ‘Gift’ that he was going to bring our lives. The more I thought about it, he did bring us many gifts in his short life. Here are only a few.
Acceptance – I had accepted what he was going to bring to our lives and embraced it with open arms. We have had many people comment on how well we handled the diagnosis, my response to them was, ‘What choice did we have, he is our son.’ We love him as much as our other two children. We accepted Caleb as perfect in our eyes, maybe not in the worlds, but in our hearts and mind, he was beautiful and perfect. He was also taught us to accept people who are ‘different.’ We would want people to do the same for him.
Compassion – I will never see a person with Down Syndrome (or other disabilities) and not feel my heart tug. I feel for their struggles as well as their accomplishments. I will do whatever I can for Down Syndrome as my gift back to Caleb. I will also always feel my heart tug when a family loses a child, whether it is miscarriage, stillbirth, or a death. I have been in two of the three situations and I know where they have been, what they are feeling, and what they will be going through. It is the hardest road I have traveled in my life, and I wouldn’t wish anyone to have to travel it.
Faith – We were praying that Caleb would be healthy and whole. The way it happened was not what we wanted or expected, but in Heaven he is healthy and whole. By faith, we will see him again and what a wonderful time it will be. He has made me realize how much my faith gets me through. Without it, I could not go on.
New Friends – I have met many new people through the Down Syndrome Association, from wonderful caring nurses, to people in my SHARE support group. Without him, I would never have met these wonderful people. Not only have I made new friends, but I also realize who my true friends are. Friends who supported me in my decisions about Caleb, and welcomed him with open arms.
Perspective – I used to worry about how clean my house was, or getting all the things done on my ‘list.’ Now, I realize that it will always be there. It doesn’t matter if it’s done today or tomorrow. The small stuff means nothing; there are more important things in life. I try not to let little things bother me anymore, because they really aren’t that important.
Strength – I realized I am stronger than I have ever imagined. Some days I am stronger than others, but I can and will get through this.
Love – love for a child who was with us for only a short time. He will be loved forever. I take comfort in knowing that the only thing he knew was the love we felt for him.
My Children – I realize now more than ever how much of a miracle they are. With now knowing about the translocation of chromosomes we now know we had a 60% chance of miscarriage with each pregnancy. We had experienced three miscarriages and now Caleb. I know our two living children are miracles and I thank God for them.
These are just a few that I can think of now, but I’m sure Caleb will continue to bring us gifts throughout our lives. I thank him for what he gave us and will continue to give us.
We love you Caleb
Mommy, Daddy, Joshua, and Jenna”
The Down Syndrome of Greater St. Louis can be checked for more information, support, and resources.