Father's Day

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

This is an open letter to all you Dads who are coping (or not) with

having a PID kid. It's a tough job. Not only are you needed to parent

in all the ways that other Dads parent, but you have demands placed on

you that tug at your heart in ways you can't express to other Dads. Hey,

sometimes you can't even express it to your wife. I encourage you to

attend a national conference or a family retreat with IDF sometime soon

so that you can network with other Dads and not feel quite so alone.

Having a PID kid puts you in a very incredibly demanding role. Dads

were designed to be " fixer-of-all-things. " From earliest days you were

the one who could fix their broken toys, their broken bikes, and even

broken hearts. It's Daddy's lap they run to when they are afraid. You

are the one they talked about when they said, " My Dad's better than your

Dad. "

But with PID -- there's no fixing it. And deep down you know that you

are scareder than they are. Your wife may even be telling everyone that

you are not even grieving, but I know better.

I was talking with a Dad recently who teared up as he said, " I'm

supposed to be the strong one, to have answers, but heck -- my wife

knows more about that stuff and I just feel like a big klutz and I don't

know what to do or how to do it. " I want you to know that that's a

universal feeling that I hear when I talk to Dads with chronically ill

kids. But those kids are still watching you for their cues and you know

it. So, you worry about it. Some of you get ulcers worrying -- and

it's not just the medical bills and insurance -- it's all those deep

crazy fears of losing your kid and knowing that that will be the worst

day of your life and wondering whether you'll be able to handle that.

It's wondering how your kid will perform as an adult -- and how you'll

navigate all the pitfalls between here and there.

Hooray for you if you've made the decision to celebrate each day and to

guide your family to a new definition of normal. Isn't it normal to

have an IV pole in the living room? I thought kitchen cabinets were

made to be pharmacy shelves! Hooray for you Dads who do the physical

therapy and chest compressions and sinus rinses and asthma treatments

and those midnight runs to the ER or pharmacy! Hooray for you Dads who

have taken the leadership role of seeing that life stays as normal as

possible and who sees to it that your kids know that they are far more

important that any PID!

When I was a child, Mother had a little magnet on the refrigerator that

said, " Dads, The best thing you can do for your kids is to love their

mother. " That advice is ten times more meaningful with a PID kid.

One dad told me, " One of my roles as Dad to a PID kid is to listen,

listen, listen as my wife cries and screams and despairs. Every night I

dread coming home to hear more complaints about doctors and hospitals

and nurses and I have to be strong while she cries about her fears and

worries. That's one part of being a Dad that most people don't realize.

I'm scared to death -- but I have to stay strong. " Then he went on an

added -- " After she tells me all these terrible, terrible things -- she

curls up in my arms and goes to sleep -- while I lie there awake for

hours wondering what I am supposed to do with all this information. "

So hats off to you Dads -- regardless of what stage of coping you find

yourself. It's a very special role that you've been called to handle.

Remember, that God is available and ready to guide you through this

tough assignment. It's a strong man who places his hand in the Hand of

a strong God.

May God bless you today and guide you as you " Dad " your kids!

In His service,

Dale