From the Mouth's of Babes

**BrianR** · 11-18-2011, 03:17 PM

I hit the pavement at 45 km/hr on my road bike this summer that sent me to the hospital but I didn't shed a tear!

Today my 5 year old daughter wrote a card for her Mom that said..."if you die my heart will be on fire". Damn if that didn't get me there.

Even 5 year olds get it.

We need a cure for all of us (that includes those of us who do not have WG but share the pain in our own way).

Stay strong.

**maria garcia** · 11-18-2011, 03:46 PM

Brian, I feel your pain my daughter is the patient here and I want to be strong for her but I feel like my soul is being riped slowly.

Al · 11-18-2011, 06:03 PM

Originally Posted by BrianR

Even 5 year olds get it.

Brian--I have to ad that she is one cute kid, as well as a very smart one and a major contributor to family lore. (Our own kids haven't coughed up, so to speak, in the grandchild department, so we have to borrow some temps now and then.) Another thing: I appreciated your stance as a spouse. Often, the other party is seen as someone who "just doesn't get it". But this can't be right. Indeed, I cannot conceive of going through this process without a partner. My hat is off to my wife, and to you as well. But, yes, therapy is necessary for us all. My late mother in law used to say, "life is pretty good so long as you don't weaken. Yet we all weaken, and then life seems not so good. The web of family helps, of course. So does a great example. You know, I think that the little one who said, "if you die my heart will be on fire" will have that heart on fire, in the best sense, for the rest of her life, just because of who her parents are.

Al

**Geoff** · 11-18-2011, 08:19 PM

Thanks Brian for sharing that with us. Whilst the subject is tears and pain, I believe that Wegs can have a positive aspect as it 'points up' the love that we can experience , especially within the family.

It sharpens the senses to appreciate the 'good times', and they will be relative and subjective.

P.S Take it easy on the bike my friend, stop staring at all that beautiful countryside and keep your eyes on the road!

**Dirty Don** · 11-19-2011, 05:37 AM

WE all should be kids again, purposefully or not...sighs...

**Hammy8241** · 11-19-2011, 05:46 AM

Originally Posted by Geoff

P.S Take it easy on the bike my friend, stop staring at all THOSE beautiful WOMAN and keep your eyes on the road!

Put this right for you Geoff!

**pberggren1** · 11-19-2011, 06:35 AM

Oh Brian, I hope Marta is okay. Hana is such an angel.

I know you care so much for your family. It really shows in your words and actions. But I know that even you have much pain to go through. It is very hard to see Marta go through all that suffering. I really do think the caregivers have it just as bad or worse than the patient. Right now I see my parents stressed to the max.

**Dryhill** · 11-19-2011, 08:34 AM

Brian thanks for your comment. I realised how much my family were concerned about me, but completely failed to pick up on how bothered my next door neighbour was. It was when having coffee with her that her concerns and worries about me doing to much came out. There is no way that I could have got to my current situation without the support of family, friends and neighbours.

**BrianR** · 11-19-2011, 09:24 AM

Thanks everyone.

Marta is doing quite well but she, like you, has ups and downs and is now looking at another round of RTX to keep the beast at bay. I am sure she will post an update when she returns from Edmonton tomorrow or the next day. I am OK too but have my moments when something happens like what Hana said yesterday.It is really quite incredible (and marvelous) how aware kids are.

I do not post much but follow a lot so I know what's going on with most everyone!

Hope for better days ahead for all of you!!!