Weathering the Storms and Chasing the Rainbows

[Guest guest]

I follow this little boy's website, as he has kidney disease and recently

received a transplant from his mother. I get an update by email now and then,

and thought that many on this list could relate to what she says...especially

this first entry, which is beautifully written...

and Rob 18 JAS

Two Sides of the Same Story…Weathering the Storms and Chasing the Rainbows.

Posted: 11 Mar 2008 03:39 PM CDT

I was thinking this week how much perspective life takes and how everyone has

their storms and their rainbows.

I often wonder if I paint too many rainbows because the storms are so

emotionally tolling. But in doing so, I make it seem like life may be easier

than it really is and I am doing an injustice to the other parents that are

going through all of this with me. There is constant stress and fear that is a

permanent part of having a sick child. You never get used to it and you never

get over it.

On the other side, I feel guilty saying how hard it is because I have been

blessed with a remedy for Gavin to feel good again. Trust me, I never for a

minute take any of our miracles for granted.

So I wrote two versions of the same story this week (written on 3/9/08). Both

are reality, both are talking about the same things and events. You can choose

to see the storm or the rainbow in life. I see both. I believe that is true for

every person in every situation. I choose to chase the rainbows, and weather the

storms.

Photo: Les ChatfieldWEATHERING THE STORMS

This past week got the flu immediately after her “half” birthday party.

We kept and Gavin as far apart as we could, because we just knew if Gav

got this we would be in the hospital.

We woke up and scrubbed the house every morning at three a.m. Without fail, five

days into ’s start, Gav woke up with a high fever and some unusual habits.

He was like a little hot barnacle that clung to my every move. We were told to

bring him in and his liver enzymes were in the 1000 range, which is quite high.

He was then admitted for 48 hours to do every culture under the sun and every

lab test known to man. He was absolutely miserable and we couldn’t give him

anything for the pain. (Tylenol is processed in the liver and ibuprofen in the

kidneys, and both organs were being sassy).

Meanwhile, on the home front Lulu had turned from bad to worse. Grams took her

to the doctor and she had a terrible ear infection.

Because it takes about 48 hours to get cultures back Gav was an infection risk

and had to stay in his cell, I mean room. We go back in on Tuesday to check his

numbers.

He is starting to feel better and if he continues he is to have yet another

surgery on Friday.

Sometimes you just feel so helpless and blind through this. It’s like no matter

how much I read I can’t seem to figure it all out, and sometimes I have to

reread things a zillion times to get what they are saying. Sometimes it feels

like you know just enough to shoot yourself in your own foot.

They say live a normal life and then give you fifteen handouts about mosquitoes,

sun and food (summer) and flu’s and warning signs (winter). It’s enough to make

you feel like you are going crazy. It gets so overwhelming, sometimes I wish I

could trade spots with Jay and go to work just to get away. The truth is the

disease is always here, and we will always be dealing with a part of it. It’s a

constant mind game of how to approach life and its events.

There will always be a permanent sadness for having to do the things that we

have had to do to Gavin. That has had to watch some horrific things done

to her brother, while her parents sat by and watched or worse when we were the

ones doing it.

Since we have been home Gavin won’t let me out of his site and I got his bug.

You can tell now this is all starting to mentally affect him and he has to sleep

literally on top of me for comfort at all times. We thought that it was supposed

to be the first 100 days, but now have learned to expect another year of

insanity.

Life as we know it has not changed. We still don’t see our friends, we still

don’t make plans because we will inevitably be canceling them. Life can be

ironic, unpredictable, even cruel at times…but it is always beautiful.

Photo: Steve JurvetsonCHASING THE RAINBOWS

I bet you didn’t know what this past week had in store for us? Neither did we

until found out it was her half birthday, so she was in charge of treats

at school. She looked up at us with those chocolate silk eyes and asked what we

were doing special for her at our house. Unwilling to tell her that a half

birthday is an un-event, I asked what she was interested in.

She wanted her two neighborhood friends over for a little half birthday party.

Two happy meals, two friends, and two sundaes later, was quite pleased

that she turned four and one half. She said that this time, she “even felt

older”. Unfortunately, she caught a bug and four and a half had a rougher start

than anticipated.

Gav is currently obsessed with the movie Madagascar and is insistent about

trying to put it into the tv anyway that he possible can. He also loves dangling

his little body onto the fridge pull and clutching it for dear life until it

opens.

When his appetite and grip started to go south, we knew that he was getting

’s bug. Poor guy ended up inpatient and had every test done to ensure that

it wasn’t another organ failure, or a rejection, or staff infection. Luckily

they have an amazing child life program and had Pet Pals.

Gav was able to play with a golden lab and a mixed breed. He was beside himself

with glee. He kept busy in his room by painting and throwing things around and

watching me get them. Jay and I at least got to spend some time together. We’ve

been very lucky to be able to support Gav and each other through most

emergencies and clinic appointments. He is always the hand that catches me as my

fingernails dig into the side of the cliff.

It allowed us time to read and learn and try to figure out what is the best plan

for Gav’s future well being. We know that when he gets older he is going to be

asking us why we did what we did, and we better be able to explain it to him. We

are very lucky and blessed that his body has done such a remarkable job

accepting his transplant. I know there are millions of parents out there wishing

there was something like that out there for their child. I know that we are

forever blessed to have friends and family that have stood by us through all

these years. Although there have been bumps, we will figure them out as they

come and find our balance once again.

Both , Gav and myself are on the mend and very happy to hear that the sun

may be coming out. Life can be ironic, unpredictable, even cruel at times… but

it is always beautiful.

Jill