Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Saturday, April 17, 2010

Hospital survival kit

Well, I have sure had the heavies here lately. DNR's, Missing buses, the relation of time and God to the universe. I thought I'd get a bit "lighter" in my tone.

So, I thought I'd write a little note to you all about what to bring someone if they end up unexpectedly in the hospital. Seriously! You NEVER know when you might need to know this. (oops, sounding a little heavy here again, sorry!) So here is some of the great stuff that I have had brought to me, and some ideas of my own. After several hospital stays, I consider myself a PRO.

Some of this works for the one who is ill, some works for the one who sits with them night and day and some works for either one.

First of all, when it is unexpected, you are sure to really wish you had some stuff like deodorant, mouthwash, or, like one friend brought me, the cutest, tiniest little mascara tube I've ever seen. Oh yeah, and she even included some under eye puffy bag reducer too. She was going to have me looking GOOD. Some of those little disposable face wash cloths are great too. It really is great, when you get up off that bedside chair in the morning to greet the ward doctor, 4 residents, and a nurse, as they all gather round you, to know that you have minty breath, smell reasonable, and even have great eyelashes. And space is at a premium, so the smaller, the better.

If you know someone who is in with a child still in diapers, bring a packet of baby wipes. They do have them in the hospital, but they only crack em out once your little guy has a red, sore bum from the hospital wash cloths. Hospital wash cloths are NOT soft. And baby wipes can be used for so many things...

People who brought warm, fresh coffee were perfectly acceptable too! Mmmmmmm. Comfort food.

Of course, magazines and books are great. Lots of time for reading in the hospital! A newspaper is good too, cause after spending a few days in the hospital, you can really be out of touch with what is going on. But the friend who brought me a portable DVD player and some movies was really into the spirit of things!! I laughed, but it was great. Cause when you are sharing a room in the children's hospital, you are likely watching a lot of children's programing.

A small gift is nice too. It doesn't really make a hospital stay physically more comfortable, but as a symbol it sure can mean a lot. One friend brought me a pair of earings, and I wore them all the time. They felt like moral support. One for each ear, to whisper encouragement as I walked (they were jingly.) Actually, anything that can be worn is good for a woman's morale. Oops, sounds sexist. Ok, it is good for THIS woman's morale, anyway. I don't know what to do for a man. Food?

Healthy snacks are great. I mean it. Ok, yeah, junk food is good too, but you can get it at the gift shop in a pinch. But some peeled and cut up carrot sticks? Crackers and cheese? A banana? All great stuff.

A small pillow might be good. Specially one of those "neck roll" ones, like they sell at airports. For people who have to sleep in a chair.

I think I would have liked something to occupy my hands. Like knitting, no wait,.... too dangerous, someone might get hurt in a scuffle with the knitting needles, and by someone I mean any nurses aide who tries to tell me that the call button is for "emergencies only." Maybe one of those squeezy balls to relief stress or something. Even if you throw it, it will just leave a red mark...

And here is a MUST. If there is one terrific gift you can bring....... (drum roll.....) It is a box of the poshest Kleenex tissue ever made from the produce of a tree. And, seriously, remind the person you are visiting to pull some Kleenex to take to the bathroom too. Cause I don't know what trees the hospital stuff comes from, but I suspect they are cacti. And if you are sobbing your eyes out, nothing like rubbing your face with some sand paper.

But the absolute best thing you can do is bring YOURSELF. Hospitals are boring, lonely places. Time hangs heavy, as you may have guessed. When I am in there, every little scuff of a shoe in the hall makes me look up to the door with a look of wistful hope. Is anyone coming with test results?? With a solution? With an offer of how long until we go home? Or might it be that most wonderful of all... a VISITOR.

So, what I am getting at is: Thank you EVER SO VERY MUCH to everyone who sent or brought a gift, especially when you came for a visit too. And I hope this is encouragement to anyone who knows anyone in the hospital. Take some time out of your busy schedule and do something nice, something that will mean more than you know, and go visit that person! And bring em some decent Kleenex!

Matthew 25:34-40

2 comments:

  1. I am SO with you on the tissues. I remember when Lydia was still in the NICU and we kept getting bad news after bad news, I'd be weeping like a loon and they'd be all, "Here...take this sand paper to dry your eyes." I started bringing my own :)

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  2. I am there with you too. Had my fair share of hospital stays with Graham and you sure do begin to feel like a Pro. 1 thing I would add...don't know if you feel the same...but I would tell friends and family to keep the phone calls in to a minimum. They always seem to come when the Dr. is there or you are trying to get some much needed sleep. Texting and/or emails are less intrusive. Also, posting updates on a blog or web page helps keeps everyone informed and you only have to tell the story once.

    Hang in there!

    Tracy Whitney
    'Angel' Graham's Momma

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