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Monthly Archives: March 2019

Down Syndrome and What I Have Learned

I was 45 when my last child was born. Because of my age the doctors wanted me to do genetic testing to look for possible defects. I declined because even if the tests showed something I wouldn’t have had an abortion, so why bother. I really thought there was nothing wrong. I had had seven other children that were healthy and I knew this child was supposed to come to our home so I just thought there couldn’t possibly be something wrong. Actually, I’m really glad I didn’t know beforehand that she had Down Syndrome because I would have worried about it the entire pregnancy. I would have gone to the worst possible scenarios and possibly have felt bleak. Not knowing beforehand saved me from a lot of unnecessary anxiety.

I have always had c-sections and when she was being born I could feel what the doctors were doing so the anesthesiologist quickly put me out. Later, in the recovery room, in my hazy rousing, I could hear my husband say that the baby had Down Syndrome. This was also a blessing because my brain began to process that information. When I was fully awake I had already accepted the information and surprisingly I was calm. Mostly I think I was trying to figure out what life was going to look like now. This was really different from how I thought it was going to be and I was trying to wrap my brain around my new reality, in a little bit of a daze.

She was born in the early afternoon and that evening after my husband had gone home and I was alone, I sat there pondering the situation. I think because I was calm I was able to hear the whisperings of the Spirit. I remembered two things that had happened in the past. One, when I was 25, was a Relief Society lesson taught by a woman who had four children, three of them with major disabilities. She spoke about how she had prayed about her children and their lives she had come to understand that for some reason this was God’s will and that her children had accepted this assignment in the premortal world. Because her children had great faith and obedience they had followed the will of the Father. At the time of the lesson I had a very strong witness that what she was saying was true. So strong in fact that I wondered about why I had had that experience. Every so often I would ponder on it throughout the years, still puzzled about the depth of it.

The next experience was remembering an Ensign (April 1993, p 27) article I had read several years before. The article was about a man who was pondering about his daughter with Down Syndrome, looking for some kind of peace as to why she was born this way. While pondering he had a remarkable experience. He said that it wasn’t a vision but more like a scenario that impressed itself on his consciousness. In his mind he saw his “family” in the premortal world and our Father and came to them and said He had an assignment for one of them. He said that our Father went on to say that the one would experience earth life differently from the rest of the family and it was necessary so that they could learn how to love purely and unconditionally. The man said that the “brightest and most beautiful” among them stepped forward and volunteered. The volunteer was his daughter with Down Syndrome. He wasn’t sure that this really happened in the premortal world but the principle that he learned was important: she was Child of God and that they had much to learn from each other. I personally think experiences like this are given to us in terms we can understand and are not literal, but they teach us important truths. The truth here is that our children come to us with great faith and together we learn things that help us grow and become better than we could otherwise.

So, back to the night in the hospital when my daughter was born. These two incidents came to my mind with the thought, “these were to prepare you for her.” A great peace and sense of wonderment filled me. Everything would be okay and we would be fine. That experience with the Spirit that night taught me several things. One was that this was not an accident. For some reason this was part of the plan. She was meant to come to my family and because of her great faith she accepted the will of the Father and was born to a different kind of life. I often remind myself that she is the “brightest and most beautiful” among us even if I can’t see that right now. She can be stubborn and obviously is not perfect. Another thing I learned was that God is aware of the details of our lives and prepares us for the things that are going to happen. I was not aware that I was being prepared but that didn’t stop the preparation from happening. When she was born God had taught me what I needed to know in order to love and care for her, and accept her. I still had a lot to learn but the foundation was in place and we could go forward secure in the knowledge that we would have His help. I have also learned since then that no matter what child you have there will be difficulties, challenges and hard times. Each child is unique and comes with his or her own challenges, they’re just usually not as obvious as Down Syndrome. I have also learned there will also be joys, peace and love. Every child has the ability to bring joy to your life if you are open to it. So, having a daughter with Down Syndrome is not exactly what I expected or thought how it should be. It’s even better.

The Simplicity of Family Fun

On The Nose

In my last post I wrote about how much work there was with a family and the importance of taking time for fun. I regret not spending more time just playing with my kids and enjoying them. I do remember some fun things we did together though. It’s funny that most of these things were spontaneous and unplanned yet they are some of the sweetest things I remember doing with my children. I’m not even sure how this one started but my children loved it. They would lie on the couch with their head on their dad’s lap and he would stack cheerios on their nose. My children would line up waiting for their turn in delightful anticipation. It was a contest between the children to see who could lay the most still and could get the most cheerios stacked. Each would carefully angle his or her head to figure out the best position. It was serious business! I was the one who supplied and counted the cheerios, and took pictures. A really simple thing yet when I talk with my children about it they remember it vividly and talk about how much fun it was. I still have the photographs and when I look at them sweet memories flood my mind. One picture shows my toddler lying there with someone holding her hands so she wouldn’t push the cheerios away. She had watched everyone else doing it and she wanted to do it too but didn’t actually want to have something on her nose. Her brothers and sisters were gathered around counting the cheerios as they went on her nose and cheering that she sat still. It is a priceless memory!

A Sweet Memory

Another sweet memory is when I had a daughter sitting on my lap and we made up different kinds of kisses. I had a couple of other children sitting next to me and each of them got involved and we were all laughing and doing the kisses on each other. One was the race care kiss where you zoomed your lips across the cheek of the other person, and of course you had to make a race car sound. There was the butterfly kiss in which you fluttered your eyelashes against the cheek of the other person. That one mostly tickled. An energetic one involved bouncing kisses off the cheek of your partner and we called that one the Pogo stick kiss. The most popular one was the ice cream kiss which involved licking the cheek of the unsuspecting person sitting next to you. Yes, I know it’s disgusting, yet somehow it was fun when done with my kids. The ice cream kiss turned out to be the most fun because everyone was chasing each other to “kiss” them. It’s been many years and I don’t remember all of the kisses we came up with but I do remember just enjoying my children. I remember being present with them and just having fun together.

Singing and Dancing

Something else I remember doing is singing and dancing with my kids. We’d put on a Raffi CD and hold hands and dance around while singing along with the silly songs. A couple of my daughters have really good memories of doing that so I found some Raffi CDs on Amazon and sent them to them so they could do the same with their children. Most people today don’t remember Raffi or know who he is, which is kind of sad because of the good memories I have of his music. I have always liked singing and sang a lot with my children. Using familiar tunes we’d make up new words to songs as we were driving somewhere or working together. We also sang a lot of Primary songs driving places and the added advantage to that was it cut down on the fighting and arguing in the car.

Funny Sayings

One last thing want to share is how we made up funny sayings along the lines of See You Later Alligator. Every morning as my kids left for school I would say In a While Crocodile, and See You Later Alligator. One morning, on the spur of the moment, I added a new one. Hit The Road You Silly Toad which spurred others, Remember To Laugh You Funny Giraffe and then That’s Preposterous You Crazy Rhinoceros! Some of my kids thought of other ones too. We had fun most mornings adding to the sayings. I still say these to my only daughter at home as she heads out the door to catch the bus.

No Expensive Gadgets

When I look at these fun things what stands out to me most is that none of these cost any money, we didn’t go anywhere fancy and it didn’t involve any expensive gadgets. It was just me taking the time to focus on my children in fun ways, and being relaxed and really present with them. I wasn’t worried about what needed to be done, teaching them something important, or working. Maybe because it didn’t happen too often these things stand out in my mind and the minds of my kids. Whatever the reason, to me it emphasizes the importance of enjoying my children. It also shows me the value of just having fun together and the love and strength that results. I’m glad to have these sweet memories.

Work vs Family Fun

When my children were young there was always so much to do. I would wake up early to get kids ready for school or church, often after having been up several times during the night feeding a baby. I would work hard all day and late into the evening. There were always meals to fix, laundry to do and a house to clean. There was homework to supervise, children to bathe, as well as shopping to be done and music lessons to get kids to. During the spring and summer there was yard work and gardens to tend. During the fall there was canning and dehydrating fruit. I volunteered in the schools and there was church work to be done. I was always busy, busy, busy. Somehow I was self driven to try to do everything in my mind I thought I was supposed to do. Even when I was really tired it didn’t really occur to me that I didn’t have to do so much. I was a worker and work was what I did.

One day a few years ago I was talking with one of my daughters who told me she wasn’t sure she wanted to have children. She said it just seemed like a lot of work without any fun. She had watched me during the years and had seen all the work I did without really taking a lot of time for fun, and it seemed like drudgery to her. After talking with her for a while, I reassured her that she could make motherhood as fun as she wanted. This conversation left me feeling a little sad though. I felt sad that I had subtly conveyed the message that motherhood was all work and very little fun. I also started wondering about how much work is really needed to make a home run smoothly and how much is too much. Did I really need to do so much? I did do a lot of fun things with my kids. We had craft time, went to the pool and park several times a week during the summer and went to the movies often. We had halloween parties and celebrated birthdays with family parties and played board games. I read books with my children and we went to petting zoos and aviaries. But, even theses fun things were a lot of work because we often had not only my kids but half the neighborhood joining in. There were so many little fingers into the projects we did and getting anywhere with my crew took so much energy and work. I viewed having fun as work! And I was usually thinking ahead what needed to be done instead of being present and enjoying my family.

Now that my children are grown and gone I look at things a little differently. Perhaps I have learned to relax a little over the years. Maybe I see how fast the time has gone. Perhaps I have come to realize that work is important but that relationships need to be nurtured by doing enjoyable things together. Families do take a lot of work, even to have fun. But, having fun together is just as important as working together. Being together just for the pleasure of it without thinking about what still needs to be done. The kind of together that says I love you and I want to spend time with you. The kind of fun that says you are important to me. So, if I had another magic wand…

https://www.lds.org/topics/family-proclamation?lang=eng&_r=1&old=true

Tomato Soup and Tuna Sandwiches

When my husband and I were newly married we often had tomato soup and tuna sandwiches for lunch after church on Sundays. The only problem was I liked my tuna with mayonnaise and tomato soup made with milk. My husband liked his tuna with miracle whip and his tomato soup made with water. I couldn’t believe he liked it that way! After a light teasing about who had better taste and who was right, we came up with a solution to the dilemma. Whoever made lunch would get out two pans and divide the soup and put half into each pan, and to one add milk and to the other add water. The same happened with the tuna. It would be divided into two bowls and to one was added mayonnaise and the other miracle whip. Even though this was extra work it went on for several months and solved the problem of accommodating completely opposite tastes. One Sunday after church my husband was making our usual lunch of tuna and soup and I noticed he only had one pan out and one bowl in which to make them, and he was making them the way I liked them. I asked why and he responded it was just too much energy to divided everything, and being the kind person he is, he did it the way I like it. We have done it that way since then, almost 34 years. Yet, if he hadn’t simplified it, I would have kept it up because it’s so easy to get upset at stupid things and to let little things become big things. Little, unimportant things like tomato soup and tuna sandwiches get blown up out of proportion and cause unkind feelings between people. I once read a letter someone submitted to an advice columnist. It seems that the wife liked to keep her peanut butter in the cabinet and her ketchup in the refrigerator and the husband liked to keep his peanut butter in the refrigerator and his ketchup in the cabinet. They had been fighting about the right way to store them and they were asking the columnist to solve the problem. The answer? Keep ketchup and peanut butter in both places, the cabinet and the refrigerator. So simple, and if I had been the one to write the letter asking for help I would have wondered why I hadn’t thought of that obvious solution. Maybe I would also have wondered why I had spent so much energy and unkind thoughts on something so insignificant. Sometimes it’s so easy to get caught up in who’s right or the emotions of the situation that we don’t get to the problem solving stage. Most problems have solutions and if we take a few minutes to think about it we realize that usually it’s just a matter of taste or even habit, not what’s morally right. Realizing this allows us to think of solutions to problems that confront us and then everyone wins. Relationships take a lot of effort, energy and compromise but when both people are happy, life is good. I have found the when I take the time to focus on solutions to the problems that confront my husband and myself that we’re both happier.

https://www.lds.org/general-conference/2014/04/what-are-you-thinking?lang=eng