Thursday, November 25, 2010

Wearing My Gratefulness Badge

I have to be honest with you. I'm not a fan of telling time and time again that I'm grateful. Thanksgiving makes me look inward to reflect on what I am thankful and grateful for (and I'm thankful). In some ways I even resent telling it time and time again.

Sometimes I think people expect me to always wear my gratefulness like a badge. My two children were lucky enough to each receive kidneys donated by two wonderful friends 2 1/2 years apart by skilled surgeons after my son was kept alive by a skill dialysis team.

I'm grateful, I really am. How could I not be?

I resent it I think because I feel I show I'm grateful twice daily as I prepare the some 20 medications for my two kids. I know the meds keep their transplanted kidneys safe in their bodies and their mental health on the right track. I think I show that I'm grateful every time I burst into tears when a friend surprises me with dinner on a Tuesday for no reason, other than she loves me and wants to help. I think I show my gratefulness every time I do a great job on a project for which I'm proud. I am certain I show I am grateful for where we are by sharing what I've learned navigating the mental, education and health care systems with other parents. 

My children are alive even though I've cried with mothers who've lost their own babies to the same disease our children share. My children are here, they are here to enjoy Thanksgiving break and I'm grateful. I think about those other mothers whose children are not here with them and I feel shame for not always being grateful and for not always wearing that Gratefulness Badge.

I am not especially grateful for the hard road we are on as a result of this never seen before syndrome. I have to say, I don't count my blessings for my kids' pain and suffering or their uncertain futures including wondering if I will outlive them. I'm not feeling grateful about the prospect of my son needing more intervention from the mental health community just to survive puberty. No. Not grateful.

But I do try. I like that Thanksgiving slaps me in the face and makes me pay attention, makes me share being grateful publicly. It makes me claim what I am grateful for in spite of what I am not, even though they are almost always connected by circumstance.

I’m thankful…

1.      That our insurance only increased 15% and not the 23% like last year,

2.      For our friends and family who support us unconditionally,

3.      For health care professionals who are compassionate and smart,

4.      For friends I’ve met as a result of my kids with special needs,

5.      For doctors who hand out their email addresses freely,

6.      That some pharmacies really do offer customer service,

7.      For the Internet and the chance to meet more of my people,

8.      For health care professionals that don’t chew/crack gum,

9.      For a psychiatrist who values my input as his patient’s mother,

10.    For a school that always puts my kids’ needs first,

11.    For kids who like breakfast for dinner,

12.    For a family that doesn’t mind eating on paper plates,

13.    For people who don’t judge us by the behavior of our kids,

14.    For other parents who encourage their children to berfiend mine,

15.    That modified homework actually exists,

16.    My church family sticks by me even though I'm not there very often,

17.    That I get to do tangible work towards research of one of my kids’ diseases,

18.    For the alone time I get because of my husband and friends,

19.    For a job I love and can do around my kids' demanding needs,

20.    My husband has a sense of humor, a sense of romance and common sense.

Feel free to add to my Special Needs Parents’ Thankful List. I'm grateful you're here (really, I am) and I hope that you have a wonderful Thanksgiving, whether you wear your gratefulness like a badge or hide it like me.

Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special

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