Spread the Love

Unlike other ultra-rare genetic deletions, where families are left on their own for information and support, 4p- has an active — super active — support group. This group has been invaluable to us. Without it, I would have long ago pulled out all my hair. And those of you who’ve seen me, especially in the soupy humidity of summer, know that’s a lot of hair to pull out.

But it’s a labor of love, this support group. The president, for instance, does the work completely unpaid, and it’s a full-time job. The volunteer-leaders of this group coordinate regional and national conferences for families, work with leading medical experts to gather data, send out newsletters, connect families, and make their presence known at major genetic conferences, among other things.

So if you feel a little love for Fiona, and feel like spreading it around, consider donating a buck or two, or ten, to the 4p- support group. It’s super easy. They even do Paypal. Then shoot me an e-mail telling me that you did so, and I will give you all kinds of e-mail love in return!

http://4p-supportgroup.org/fundraising/

Seriously, don’t be shy about saying, “I spread the love!” It’ll make my day.

15 thoughts on “Spread the Love

    • it must be fearful for you. i read and felt your pain. always here to talk with. god watches all of you, your journey’s will always have bumps, hills,mountains and solid ground. share the love. peace

      • Read your essay in The Sun. As a nurse who worked with kids/families most of my career, and in a pediatric neurolory practice for the last dozen years of my career I still miss the kids and their incredible families we were privileged to interact with. Please keep writing about your children and your life — it is such important stuff to share with all families. Jan Donaldson (retired RN)
        to meet and interact with. Please keep writing about your children and your life — it’s wonderful stuff to share. Jan Donaldson (retired RN)

        appreciate

  1. I was googling “parent burnout of special needs kids” and found your piece. My daughter is 17 with prader-will. I too have been sent in hundreds of directions by many doctors. I was so unhinged last year that I would cry at EVERY dr appt. The doc would suggest I add one more straw to my camel’s back and I would become unglued. NO! please don’t do this to me! can’t you see I am falling apart here? I’d wail. I had one doctor tear up when he saw the pain I was in. I now say to doctors, must I see you every 6 months? can we make it once a year? Surprisingly, many say they are fine with a yearly visit. I told one doctor I was upset that he made me repeat a sleep study after 4 years. It was a waste of my time and hard on my daughter and me! Be sure the tell the doctors how hard your job is and if certain treatments/visits can be made less frequent. They need to understand how hard our jobs are. Lastly, tell Boston children’s they should offer valet parking!

    • THANK YOU! it’s an amazing support group built entirely from volunteers, some of whom are also single parents living off very little and working nearly full time for the organization. So your donation will be justly used.

  2. You are remarkable and I would seriously donate if I wasn’t a single mom raising a disabled child of my own. You write eloquently and express what so many of woman like me feel but can’t quite put into words. I have an ex-husband and his entire larger extended family who actively do not want our incredible (and incredibly challenging) daughter. But the love I feel for her makes up for their lack of it exponentially. I look forward to reading more from you.

    • Thank you so much for reading. I’m so sorry to hear the other family members aren’t involved. That’s heartbreaking. Our kids break us open in the best of ways. Loving them is a gold ticket, and your ex’s family clearly doesn’t know what they lost.

  3. Sending ten bucks. My son with autism wrote the return address, I love how he adds flourishes. My contribution is made with the awareness that his diagnosis receives more attention and funding than yours does. Thank you for your blog. I read a bunch of back entries and subscribed.

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