Presenting....

This morning I participated in another parent panel. This is a fairly regular thing for me, being on a panel with other parents of kids with “special health care needs.” I put that in quotes, because it is such a general term. The kids are as varied as can be; they include boys and girls from 0 – 18 years old and the special needs can be anything from disability to cancer and everything in between. Maggie has so many different dramatic needs and I have such a big mouth, that I am asked to make presentations all the time. I like it. I always learn something new about someone's situation, or even about my own attitudes.

The audiences also vary somewhat. Lately it has been mostly health care workers but I have also participated in presentations to many educators and students. Each of those groups encompasses many different types of people as well. Health care workers include doctors, nurses, social workers, administrators and therapists. Today it was nurses and social workers with a couple of doctors and administrators as well. The presentation is basically what life is like on the other end of the medical world, that is, what it’s like to be the patient, or the parent of the patient.

It is a good opportunity to dispel some myths about our family life. Maggie is a ton of work, but that does not define her. Our family is hamstrung by the level of care she requires, but that does not mean we do not have fun. The boys did not have a ruined childhood because of having Maggie as a sister. Yes, it is different, but, to use an overused phrase, “it just is what it is.” It is our reality and we deal with it, just as the other parents deal with the challenges their children present. Sometimes the toughest challenges come in the best packages.

Today's panel was held at George Mark Children's house. The George Mark house is the only freestanding children's hospice in the US, but I understand one is about to open in the Phoenix area. It is an amazing place that provides end of life care to the dying children and also provides out of home respite for weary families like mine. A child can stay at George Mark for up to two weeks in respite care and I presume as long as necessary for hospice care. Families can stay as well if they want. If you are interested in this, I encourage you to check out their website. (www.georgemark.org). They take families from all over the United States.

This was my first visit and the place is incredible. It feels like a sprawling home but has all the equipment necessary to care for Maggie or almost any other child. I looked into George Mark a couple of years ago. It took all my courage to make the call and the person who spoke with me gave me inaccurate and very hurtful information, indicating Maggie could not stay there. Any hope I had for a break from this insanity was dashed by her misinformation. I never called back. After seeing it today, I believe Maggie could stay there if Steve and I ever needed to leave town for a week. It would be difficult for me, and likely very difficult for Maggie, but it has entered the realm of possibility. Perhaps we could get a break….

Like every other non-profit in America, George Mark Children’s house is having difficulty raising money. It would be a crime if they had to discontinue services.