Grandma Anita Lopez
I am a grandma who loves children and animals. As a mother of three healthy children I didn’t think that I could possibly love another child as much as I love my own. How wrong I was! After the birth of my first grandchild and then my second grandchild I realized that all the same kind of love I have for my own children just spilled over to my grandchildren. When I got the news that I was going to be a grandmother there are no words to describe the joy and happiness I felt in my heart.
After the birth of my grandson, I began to notice that something was not quite right with him and I did not know what it was. After several months during which time my grandson was not gaining weight or thriving as a healthy child usually does, he was finally diagnosed with Cystic Fibrosis (CF). No one in our family (that we know about) has had this inherited genetic disease and I knew nothing about it at all.
It is easy to recall those initial feelings of confusion and fear as I began to discover the challenge of being a grandmother of a child with CF. While those feelings still come to surface from time to time, the majority of my thoughts now have moved toward helping my grandson, and the thousands of children and young adults like him. The change in my attitude is due mainly to my son’s own attitude about his son (my grandson) and CF. In the beginning I couldn’t even talk about CF to anyone without bursting out in tears. My son took me aside one day and told me “I don’t want you coming over here with all that doom and gloom and crying all the time as it doesn’t change or make the situation better.” At that moment I realized that he was right and that it was up to me to change, to help to make things better and to learn to take and enjoy one day at a time!
My faith in God and the church has always been the cement that holds my personal life together. It helped me as a young child when my mother died so many years ago. So I drew upon my faith once again to help me find the inner peace that I needed and to help me deal with one more obstacle (CF) in my life and to learn to accept it and not let it overcome me.
In addition to having my faith in God, my family and my friends, I would like to share the following things that have helped me in dealing with having a grandson who has CF.
Things that have helped me:
Have faith in God and pray.
Maintain a positive attitude.
If there is another sibling without CF, be sure to provide that child with just as much love, understanding and attention as possible. This is very important. This can become a real challenge in the early years as both children require and have different needs.
Involve family and friends to help when possible.
Purchase the book titled Cystic Fibrosis: A Guide for Patient and Family, Second Edition by David M. Orenstein. This is an excellent resource. As new or different symptoms involving CF appear, I turn to this book for needed information. All our family members purchased a copy of this book. I consider it an excellent resource and highly recommend purchasing it.
Go to the CF website and read as much information concerning CF so that you become better educated on CF.
Join a CF “Chat Room” and read the many e-mails from a wide range of people with and without CF. I was able to learn many things based on people who have CF and their personal experiences on how they deal with it and what works best for them etc.
Become a CF Foundation Volunteer. I became a CF Foundation volunteer-this is my 3rd year. I only volunteer to do what I am physically and mentally able to do. Sometimes this is a lot and sometimes it is very little or nothing. Either way it always leaves me with a feeling of accomplishment and a “good high”. As my commitment is a very personal one I have decided to volunteer one day a week in the Sacramento Chapter CF office after I retire from my state job. This will help me to stay in touch with the latest things that are available and happening involving CF. I encourage everyone to get involved to the extent they are able to do so.
Use available opportunities to educate people about CF in a positive way. Many people do not know the meaning of CF. I get so many questions such as: Is someone with CF mentally challenged? Is someone with CF confined to a wheel chair? That person with CF doesn’t look sick. What is CF?
Don’t let CF overcome your life-don’t talk about it all the time, only when the time is appropriate.
Share CF experiences –it really helps.
Some of my personal goals are as follows:
To continue to volunteer when possible and to help raise money for CF research and hopefully a cure.
To work to establish rules that requires all newborn babies to be tested for CF before leaving the hospital so that if a child has CF, treatment shall begin immediately.
To educate people about CF so that they can be tested to determine if they are a CF carrier and what that means.
To encourage our young people go into the medical genetic disease research field.
To encourage service organizations to become involved and make CF one of their service projects.
To provide more education and information to doctors about CF so that if a child has CF it can be diagnosed at an early age and treatment started.
In conclusion:
I have met many wonderful people since my involvement with CF and I have learned to enjoy each and every day. I have learned to listen and hear more birds singing and to just enjoy both of my grandchildren today and not worry so much about yesterday or tomorrow.
Rose & Dennis Richardson (Joseph’s Great Aunt & Uncle)
Hello. We are Joseph’s great aunt and uncle, Rose and Dennis Richardson. We do not live very far from the Lopez family and love to get together for family gatherings whenever we can.
We were devastated upon learning about Joseph’s illness, but because of Jon and Monica’s positive attitude, we have learned not to focus so much on his illness, but rather take pleasure in seeing his daily progress in doing the same things that other children do. He loves his sister, Hannah, and they are becoming inseparable. They seem to learn from each other.
We are a very close family and Joseph and Hannah are a vital part of our lives. We look forward to retiring in a few years and hope to spend more time with the children and also plan to work on helping to raise awareness about CF and are hopeful that a cure will be found during Joseph’s lifetime.
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