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. :)

Friday, April 10, 2009

Keeping count

It's Easter weekend. And much rejoicing will be done through out the world. Here's a snapshot from my world. Are you counting your blessings this Easter?

I hope everyone has a beautiful Easter with friends and family...and chocolate. :)

Monday, April 6, 2009


Matthew Oct 08.

I can't quite figure out how I got so lucky. Most people would look at me right now thinking I have lost my mind. With everything that has happened in the past year, they wouldn't have said "luck" was on our side...but it really is! That and God's good graces. For every "bad", something better has come along!
My ten month old baby is on dialysis. I'm blessed - it makes him feel SO good! He is all smiles and much more active and hungry because of it. (Well, he's cutting a canine tooth this week...so that's a lie, but he's USUALLY smiley and easy going) ;)
I travel 64 miles one way, 128 miles roundtrip, twice a week for his treatments at Egleston. I'm blessed - I get to meet SO many different people on the transplant floor from kidneys and livers (the most frequent) to hearts and lungs. It is so uplifting to hear the stories from the proud and grateful parents that are given a small reprive of worrying about their child's health issues.
My husband's paycheck doesn't even allow us to break even on our monthly bills. I'm blessed - family and health are way more important than material things. I'm thankful we are able to get medicines for Matthew to feel better; they are worth every penny. I'm thankful we have two cars that can carry me to the hospital and Ian to work. I'm thankful that the best things in life are free...laughter, playing outside, reading books and hugs.
Life has been in a constant state of chaos since last February. I'm blessed - it has helped me to not focus on myself, but on others. It's made me more aware of the strengths and weakeness in my marriage. It's made me appreciate the health in my older son...even though his "health" is what makes my house look like a tornado has struck. ;)
I'm blessed for all the lessons God has given me. Patience (that's been pretty damn hard!), compassion, strength, resilience, humor and submission. I don't wish this kind of illness on any child or that any parent should have to cope and deal with it, but I'm blessed. Matthew is a gift from God and His gifts just keep giving through my little one.

Wednesday, April 1, 2009

What's for dinner?

Sharing our menu for this week:
I never did the pot roast from last week...oops, so that's a repeat. :)

Sunday - dinner @ Artuzzi's with my parents.

Monday - Sweet and sour chicken and rice.

Tuesday - Tacos and all the fixins...YUM! (having taco salad for lunch today from the leftovers)

Wednesday - pot roast is cooking away, served with my parmesan squash and rice pilaf.

Thursday - stovetop stuffing casserole. Box of cornbread stuffing, frozen corn, frozen pepper and onion mix, can of cream of chicken, can of white meat chicken (9 - 10oz size), dash of cumin or chili pepper (depending on your taste preference), mix in a handful of mexican blend cheese and stir. Top with another handfull of cheese and pop in oven for 30 minutes at 350 or until cheese is melted. Complete meal served. :)

Friday - Ian is gone to Savannah for the weekend so it's just William and me eating. We eat things Ian's not so keen on. We are having spinach and cheese puff pastries. :)

Saturday - dinner out with my folks. :)

Happy eating.

No fooling!

Happy April Fool's day...the day all 7 year old boys look forward to with great expectation...as well as a few "grown" men too. My mother used to always fool me and my brother every April Fool's day by waking us up a little bit early saying "it snowed last night!". And dumb as we were (snow in Atlanta...in APRIL??) we always jumped out of bed and ran to our respective windows. I'm sure I'll do the same to mine. ;) Carry on the tradition sort of thing.

But I also want to let everyone know something about April that you might not know about already: April is Donate Life month. I was never aware of it myself until December when Matthew went on hemo. This month is highly celebrated at the transplant center with guest speakers, support groups and prayers/memorials for those that didn't make it to get their gift of life.

Donation, both living and nonliving, is the single most precious gift you can give to someone. It is your choice! Yes, we believe it is our choice to have children and give life in that way, but God makes that ultimate decision. This gift of life is by our own free will...and trust me, that persons ENTIRE family will be forever grateful and humbled. The transplantation process is the "success story" of the medical world. To take out a failed or failing organ and give that person a second chance to do anything...remarkable! Giving hope, memories and time...you just can't buy that with a gift card!

We are less than 2 kilos away from starting up the testing process for Matthew. I pray every night that my bout with kidney stones back in 2000 will not hinder me from giving Matthew one of my kidneys!! Whenever my little one has a bad day, I think ahead to the promise of so much more for him...a normal life. A renewed life. LIFE!

Here are some donation facts I would like to share with you:
Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:

Fact: Anyone can be a potential donor regardless of age, race, or medical history.

Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.

Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.

Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.

Fact: There is no cost to the donor or their family for organ or tissue donation.

Fact: Signing a donor card and a driver's license with an "organ donor" designation may not satisfy your state's requirements to become a donor. Be certain to take the necessary steps to be a donor and ensure that your family understands your wishes.

Please, consider donation and talk to your families. Many people are not aware of the possibility or do not want to talk to family members for fear of creating "issues". Talk to your family...please...for all the Matthew's in this world. Don't take away their chance to live.

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