Tuesday, April 21, 2009

An Address (or two)

Some people have emailed me and requested Matthew's caring bridge site link again. This site is the journal I started to keep everyone informed the day of his birth, so it goes back from emergency c-section, NICU, PD, the brief period of OUR "normal" and onto hemo. It's medical talk and some milestones. Usually just the facts, but if the facts interest you or you know someone (whether they are 5 days or 5 decades old) in kidney failure or facing some tough decisions in regard to dialysis or surgeries...please give them this link. Maybe they will see something that Matthew has gone through and that will help them in their decisions. Oh yeah, and here's the address: http://www.caringbridge.org/visit/fightingmatthew

Now onto the second address...the statement in response to an email I received. It appears someone (I will not name names, I'm not that kind of a person) agrees with the family member that previously told me to let my son off treatments entirely and just let him pass quietly. I was a little taken aback that someone would suggest that...let him pass as nature and God would have it had he not been able to receive medical intervention...let alone I was speechless that I didn't know who this person was and she didn't know Matthew. I'm not angry by any means, everyone is entitled to their opinion in my book. I'm just sad this person thinks like that, having so little value on life.

This person's reasoning was to keep my son from pain. Don't I wish I could do that...for both of them...for my entire family! You can't do that. Yes, I can tell them no more needles (I have, he now gets labs through his perma cath or his port - no tears for lab draws). But I would never wish away the vaccines at his monthly well checks, or the RSV shots he gets monthly in our house to protect against the number one killer for preemies. I despised given him his nightly epogen shots when we were doing those (before hemo - now it is just injected into the blood return from the dializer), but after the sting wore off...he felt better. It gave him energy in his body and color to his skin.

I have never elected for my children to have any pain that I didn't think they needed or would benefit from in the long run. I don't think any parents out there raise their hands and jump up and down to be "picked" for their child to be in pain. Seeing so many people at the hospital day in and day out every week, I see how good we have it actually. If a person was in a car accident and needed physical therapy to learn to walk again after a crushed pelvis...it would be painful, but worth it in the end. If you child is diagnosised with a cancerous tumor, but one that is easily beaten, most parents hold their child's hand while they endure chemo treatments. You don't deny the flu shot because it will bring 30 seconds of pain, instead you see it as preventing 7 days of miserable.

Pain is inevitable in life. It down right sucks. And yes, the old saying is true "it hurts me WAY worse than it hurts him", but we both get through because I look to the future. Of all the laughter, hugs and memories we will share together, as a family. The transplant surgery will bring pain (to both of us!), but I welcome it because it will also bring life. Pain can bring good things: the pain of child birth, the pain of donating blood, the pain of exercise, the pain of Jesus dying for our salvation.

Through stormy waters comes tranquil seas and I wouldn't miss either for all the world (with or without pain). Mark 4:37-40 Keep the faith. :)


Randi Jo :) said...

ohh the wisdom cometh out. :)

Resiliency --- finding purpose & meaning in the midst (or aftermath) of storms.

God is shaping you. Molding you. and helping you become resilient as you lean, trust & depend on Him.

I hate what you all have had to go through.... yet I love what He is doing. I am humbled & in awe at the work being done. Like the statue of David --- we are chiseled, banged up, pricked, worked on.... and it may seem the cutting away and pain have no purpose.. yet with Him all things have purpose & meaning & hope. The beauty will be revealed. it is being revealed! keep on praising Him through the storms!

Randi Jo :) said...


Julia said...

I am not sure how to articulate how God plays into my own feelings about having sick children (work in progress, that relationship I tell you) but I do know that you have to help your kids fight to live. I know that there is no way that the world would have been better without them. Or Matthew.

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