The Worlds We Enter

“You have cancer!” These are words we never want to hear, but there are many of us that hear those words. They are frightening and we know in an instant that we are about to enter another world. Another set of words that are frightening: “There seems to be a problem with your baby.” There are many worlds out there that we enter that often we don’t know much about. That is, until that world becomes our world. We find out rapidly that we have to live in the world that we just entered.

Enter: The World of the Handicapped

When my doctor came into the hospital room early one morning and told me that the baby boy that had just been born the night before probably had Down Syndrome, for some reason I wasn’t surprised. I always knew that this delivery, which was my last, was different than the others. This baby didn’t kick the same; it was almost a flutter. A week before delivery at the doctor’s office I picked up a magazine which had an article about a woman who had adopted six or seven Down children. They looked like normal kids in their pajamas and looked happy. I’m not sure what I expected, but normal was not it.

I thought back some twenty or more years to when my cousin and I were sixteen. We volunteered to help at the Ridge Home for Retarded Children in Colorado. Yes, that was the name. That was the era of putting children that had handicaps in institutions. It was not a happy place. In fact, it left a powerful impression on both of us that we never wanted to enter that world.

Yet, the magazine portrayed a completely different look. Yes, they obviously had Downs, but they were clean, energetic, and happy looking. They were involved in the sports show they were watching and I can remember thinking “I think I could handle it if this baby has Down Syndrome.” Sometimes I think we get a little extra help from heaven in preparing us for the world we are about to enter.

Yes, he did have Downs and fortunately for us we lived in an area of the country that had one of the first infant stimulation programs in the country. There were two others. One in Los Angeles and the other was in New York. These were programs where the theory was that if you pattern, stimulate and do all that you can do to work with that damaged area (wherever it may be in the body) that it will help the individual.

It did. I ended up for four hours every morning taking my baby to this program and for four hours we exercised, we stimulated, we did eye exercises, leg exercises, sounds, and everything you could imagine. It helped. Did it change my life? Completely! Four hours every morning is like a part time job. You still have other children so you have to stay up with their needs; your husband’s needs, and well, your own go on the back burner. That’s okay. What I saw in progress showed me that this program worked.

The other part of the equation of entering this world is that it was one of the greatest gifts of my life. While I was trying to give this little one a quality life, he in turn was teaching me and his family enormous lessons in patience; love and the fact that there were a lot of people around in the same situation. I had never really noticed; we are all so busy in our own world.

Once, when he was only a few weeks old I had a very powerful experience with him that I will never forget. He had been quite sick and I was holding him and looking down in his eyes. He was looking up at me, and for a moment it was as though a full adult was looking up at me. His eyes were knowing, understanding and aware; there was a love and I can remember starting to cry and telling him that I was so grateful that he had come to our family. That we would take good care of him and give him every opportunity that we could give to him. That he was a child of God and we were happy he was with us. Again, that look, and then the look faded away and his baby eyes returned.

Looking back I have nothing but gratitude for this world we entered. Is it frustrating at times? Yes. Is it sad at times? Sometimes it is. However, it is a good world to know.

Enter: The World of Sickness

This is a different type of world. A Friend told me that she never understood the cancer world until she was thrust into it. It wasn’t expected or planned for. It was abrupt and suddenly chemo and radiation treatments were put into place. Her life went into a completely different direction and her days were filled with violent sickness or just exhaustion. It wasn’t short and quick. It took about a year.

In talking about this world she told me that she didn’t know how many other people were struggling with the same thing. She didn’t know how alone you could feel and yet how grateful you became for any help at all. You began to notice the people who would reach out and help.

One of the biggest things was she found she wasn’t alone. In the darkest moments when she thought it would be better to be dead she was told to fight on; endure and she was not alone. Those quiet whispering of the spirit are the comfort that we ignore often in ordinary life.

There are many people who are sick; many who struggle with physical weaknesses; aging or taking care of those who are unable to take care of themselves. Care givers alone often match the burden of the person struggling to get well.

I don’t know why we all go through different things in our life, but I do know that what we do about it is important. Often in counseling I have said in the past, “so what are you going to do about it?” It seems like a hard statement, but this is after sessions that often involved tears shed by both of us. I have great empathy for the struggles of others. It is an honor to be a partner in whatever the journey they were on if they were trying to get through it. I think sometimes that we are all counselors or should be in this respect; we should be safe, confidential, and hopeful enough that we could support any one on their journeys in life.

A long time ago, when I had first become an LDS member, I looked at where I was, and where I wanted to be. I could see that this journey was going to be complicated and hard. Having had almost bitterness towards organized religion of any kind, this was a major transition for me. The more I studied, the closer I got to my Father in Heaven; the more I began to understand that “yes, this was the path I wanted.” I started to attend as many institute level classes as I could and then tried to attend all of the BYU studies and presentations in California.

One evening as I returned from a “Know Your Religion” speaker, I remember getting on my knees and saying “You know Father; I really want to do this. I can see where I am and I can see where I need to go but this is the problem. I know that I would never do to me what needs to be done to bring about the changes, those big deep internal-eternal changes, so this is my deal with you. (I know you aren’t supposed to try and make deals with God). These were my words: “My deal, Father is that I won’t yell “Uncle” when the going gets tough. You do what you have to do and I will hang in there no matter what.

I have never forgotten that promise. There have been times when I thought about yelling “ Uncle” but the journey I have been on over the last twenty odd years has told me the process works. The reality is that I don’t know a family or a person that at one time hasn’t felt they were up against something so heavy and hard that they weren’t sure they could survive it. I know the attitude of gratitude plays a key part in keeping ourselves steady. I do know that is part of our life here. I have come to value all the experiences for what I have learned and how I have grown.