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Single Parenting with PH

By Bailey Rains


SINGLE PARENTING WITH PH

By Bailey Rains

Way back when I was in high school, I knew even then that I wanted to have children. Being the youngest child in my family, I didn't have much exposure to younger kids, but that didn't stop the desire. I even had my daughter's name already picked out. I've been blessed to have both this daughter and a son. They are both healthy and happy and are wonderful people. While my daughter is an adult now and off at college, my son still has a way to go.

Mother love is fierce. While marital love is conditional, and in my case, faded away to nothing, mother love is forever. It is simply my essence. Yes, I have had a full rewarding life, but my kids have always come first. When one of them is hurt, sick, picked on, or otherwise slighted by life, I switch into what they both laughingly call "Mamabear Mode". Mamabear has taken on quite a few battles over the years, and I'm proud to say, we've all survived beautifully.

That is, until now. In an effort to become slimmer and healthier, I asked my doctor to help me lose weight. The rest of the story is known to many of us PHers. Now Mamabear might not be around to help them with their battles and celebrate their successes. Mamabear has Pulmonary Hypertension.

My situation is difficult for me, as I am now a single parent. The decisions I've had to make and all aspects of my care are in my hands alone. After my diagnosis of PH, it was 8 months before I told my children about my disease. I had to - I was in cardiac failure, and had to be admitted to the hospital to be started on Flolan. Since then, my doctors have encouraged me to be open and share information with my children about my PH, but it has been hard. Our natural inclination as parents is to shield our children from events or happenings that might hurt them. After a period of shock, disbelief, and grief, it has become part of all of our lives. I do the mixing of my Flolan cassettes, site cleanings, supply organization, etc., and they have accepted it as a part of who I am. They know that before we leave the house, someone has to get the 'purple pack' that is packed with supplies and my spare cassette.

My biggest stumbling block with my children has been "What do I tell them?", "How much?", "When?" I received a lot of guidance from a book titled "How to Help Children Through a Parent's Serious Illness", by Kathleen McCue, M.A., C.C.L.S. It has helped me decide the answers to these questions, and others that I hadn't thought of. I sat down with both my children (separately), and simply asked them "What do you want to know?" The book suggested telling them what they want to know, being as honest as you can. Don't volunteer information that they haven't asked for. They will ask the harder questions when they feel emotionally ready to know the answers. I've made it clear to my children that they can ask me anything anytime. Sometimes questions still pop up out of the blue, like during a car trip, but for the most part they are satisfied and have accepted the situation. Of course, there will always be questions that I can't answer, as there is still so much developing about the treatment of this disease.

I have raised and nurtured my children to the best of my ability, and for 21 years it has fulfilled me. Now their love and support help sustain me. They give me reasons to keep fighting. I still keep goals of seeing high school and college graduations, knowing my grandchildren, and seeing what marvelous people my kids turn out to be. With the grace of God and a lot of luck, I'll reach my goals.

July 1, 2002


"How to Help Children Through a Parent's Serious Illness" is available through our Books page in the PHC Store, in association with Amazon.com.

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We would like your feedback. Please comment above about this article and your suggestions for future articles. We ask that all articles are relevant, that common decency prevail, and that any factual statements be verified for accuracy. If you are sending comments on a feature, please reference the title in the subject line. Our goal is to bring useful and interesting features to you in future months.

PHCentral is committed to the expression of diverse opinions from members of the PH Community.

We feel strongly that free and open discussion regarding PH will assist in the generation and the refinement of new and existing ideas. To that end, we provide the opportunity for anyone from the medical and patient communities to submit editorials, letters to the editor or short articles on a PH-related topic. We will be encouraging opposing points of view. Areas may include treatments, causes, advocacy, disability, etc.

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