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Browsing Tag: joy

See The Good In The World

I have written before about an organization called Orange Socks. Their mission is to teach people about the joys of raising a child with disabilities. Most people hear about or assume the difficulties and Orange Socks wants people to know there are good times as well as hard times. Their tag line is “inspiring life despite a diagnosis.” Orange Socks interviews families who have a child with disabilities and posts the interviews on their website as well as doing podcasts. They want people who are facing a diagnosis to hear from people who actually have a child with that disability. It helps to learn from those who have gone before us, to learn from them the realities of raising that child, of the good and the hard.

The reason why I am writing about this again is thatI have been privileged to go to several of the interviews. I was touched by the fierce love and advocacy the parents all have for their child and in some cases, children. I was impressed that these parents spoke mostly of the joys and happiness their child has brought to their family. When asked about the difficulties every parent said it was worth it, that they got far more back than they ever gave. I was amazed that in every interview I went to, except for one, the parents all spoke about how they relied on prayer to help them with their challenges. They spoke of receiving inspiration to help guide them as they cared for their child. The interviews have taken place all over the country, with people from many different religions. It really surprised me that so many people talked about praying. It surprised me that so many talked about relying on God to help them. It gave me hope to know of so many good people in the world. Sometimes it is easy to focus on the distressing things we hear about going on in the world. The media seems to blast daily sometimes even hourly the bad things that occur. It’s easy to think that most people are unkind and hurtful from watching the news.

There was another thing that happened also has given me hope. Several years ago I attended a 3 week program in Minnesota that focused on how to live with chronic pain. Every morning we had to set goals for the day, which were written on a white board in the classroom. One day, another woman in the program said her goal for the day was to express more gratitude in her prayers. That one comment is probably the thing I remember most from attending the chronic pain program. It told me that way over in Minnesota, there was a woman who believed in praying, who believed in God and in acting on that belief. It showed me that there are good people all over the country and world. Sometimes it seems like there is so much bad, and hurtful and horrific things that are happening. When I reflect on the parents interviewed and the woman from the program, I remember that there are good people in the world. Good people who believe in praying and believe in God. Who believe in helping others and giving service to their children. Even with the media bombarding us about all of the bad happening I know there is much good in the world. We live in scary times, but we also live in good and hopeful times. Take time to look for the good and you will find it!

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.

Down Syndrome-An Opportunity to Educate

I have a daughter with Down Syndrome.  She is a delightful, fun, smart person and because she is the youngest of my 8 children her brothers and sisters have grown up with her and recognize that having Down Syndrome is not a curse but just another way of being.  They know she has her strengths and her abilities as well as weaknesses and things she’s not great at doing, just like everyone else.  Many people assume that having Down Syndrome is a negative thing, that it is a hardship and that people with Down Syndrome have a very poor quality of life, that it is something to be pitied.  I know I did before my daughter joined our family.  But now of course I know how wrong I was in my thinking.  One of my daughters married a man who has a son with Down Syndrome and they have custody of him, and my daughter loves him fiercely.  You don’t ever want to mess with this mama bear and her cub.  Sometimes when she tells other people that he has Down Syndrome their response is something like “oh, I’m so sorry” and you can see she wants to thump on that person to even imply that he is something to be pitied.  I have told her that when people respond this way to see it as a chance to educate them.  Most people don’t know the joy of having a child with Down Syndrome in their lives.  They don’t know the blessings of having a person in their home who is usually loving and kind, sympathetic to others and who is funny as well as who loves to learn and try new things. Someone who trusts their parents completely and takes joy in simple things.  Of course these traits are not unique to just people with Down Syndrome and not all people with Down Syndrome are exactly like each other but most people with Down Syndrome are loving and kind.  They often have a zest for life and an implicit trust in those they love.  My daughter with Down Syndrome believes what I tell her, which is a joy and a responsibility.  Most of us have challenges in life and have situations in our lives we didn’t plan on, and there are people who don’t understand those challenges or situations.  Taking time to educate others about some of our life’s circumstances increases understanding, empathy, compassion and often helps others in their own circumstances.

https://orangesocks.org/diagnosis-resources/down-syndrome/