Hidden

Look out the window? See Mother Nature's display. God is painting the trees again. Beautiful isn't it? Did you know it was there all along? These fiery reds, striking oranges and vivid yellows...all hidden away under a peaceful shade of green. Yes, anthocyanin and carotenoids are there the whole time, you just can't see them. They need a catalyst to show their true colors and certain situations (dry, warm summers followed by cool, wet fall nights) will make the show even more spectacular. But I'm not going to give a science lesson (darn huh) ;). Just know I did very well in my plant physiology class and have a ton of respect for all the plant processes, that when broken down seem more complex than anything I do during the day!
Hidden...we keep many things hidden in this house.
Feelings are hidden to protect others that "haven't been there before"...to make it look like all is fine and we are coping. That having a medical needs child does not put a strain on a marriage while one partner fights for a child and the other fights for the couple...never at the same time, so always at odds. That others don't have to tip toe around us for fear we will cave in to depression or anger or finally snap. Feelings that we can not show enough gratitude to all who have made us feel special yet normal. Seriously, you'll never know the depth of love for you in our hearts.
But, feelings are expected to remain hidden...they are personal. Each person copes differently with feelings. I'm fortunate enough to have an outstanding husband that doesn't let me clam up and sulk...though I want to! He makes me talk things out and feel better while crying on his shoulder and snuggling in his protective arm. It feels so good to be there...protected. *I have a secret to share with you* <(whispering) I sometimes climb into my husband's arms, he scoops me up like a child and I wrap my body around his and stay there for minutes on end> I need that when I feel my most vulnerable. I need to be enclosed fully to finally feel protected from all the crap out there that is heading straight for me.
And now, I'm going to do that to my children...and we are ALL going to hate every minute of it. :( After this weekend, we are going into hiding. We ARE in hiding already...kind of. To the point that we are not going to the kiddie places or high crowd areas. But now we truly will be hidden. I will allow one final hurrah so to say with trick or treating in my in-laws neighborhood and then my dad's birthday the next day with the cousins...but after that...no more. :( Of course we will see the grandparents, but we can't be around kids of school age - pre-school through college. It's all school and school is just another name for educated germs. Matthew will not be allowed to move ahead with transplant if he has so much as a cold. He NEEDS a transplant. Those sweet potential donors are trying their hardest to get him one. We should find out in about a week. :) If no one is a good match, Matthew will be listed.
Here's how it goes, Egleston will not list a baby (especially one that is about to reach his one year dialysis anniversary) while he still has living donors going through the process of testing. A baby that has been on hemo for that long, with a common blood type, will get a kidney within a month - tops. whew! I was one relieved momma after I heard that! Living is better - will last longer, will work quicker, but a cadaver kidney still saves a life and honors an angel.
So in order to protect my family, I have to PROTECT my family. I know this will be hard. I'm not all that happy about spending day and night at the house. I just want to cry thinking about William not seeing any friends. It makes me so sad that Matthew doesn't get to experience sights and sounds that every other one year gets too. But if I don't, he might never get to experience anything. He can't experience much from a crib in the dialysis or from the PICU hooked up to monitors and IV's due to an infection/virus. I KNOW this is going to tick off some people...especially come Thanksgiving and Christmas...but they will just have to get over themselves. They are big girls and boys that need to act like that. If the shoe was on the other foot, they would do the same thing. Family comes first, my sons come first! We will spend both holidays quietly at home. And we will miss the extended family and friends VERY much.
But in doing this THIS year...in remaining hidden...image the wonderful display NEXT year when we come out. When the catalyst (transplant) occurs and Matthew is free to show his true colors that have been hidden behind the red and blue catheter lines. When he shows us what a kidney can really do! Be on the look out - God will be "painting" the picture of pure health! :)

Last Christmas, Matthew and William in front of the tree.

Five for Friday w/ Mama M

Rules for Five Question Friday: Copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop Code, and link up! I'd be ever so grateful if you'd link back to moi, also! If you don't have a blog, but wanna participate, I invite you to answer in my comments!

1. Whats your favorite horror movie?
I'm not really a horror movie kind of girl. I mean I've done the Poltergeist, Stephen King movies and some of the Jason's. But I can't do much more than that - I CAN NOT do demon movies. Sorry...too real for me. The only movies I really don't have a problem with vampires. Interview with a Vampire, Blade, Dracula - all good. So I'll cheat and go with a genre and say vampire movies. :) (and even though Twilight isn't really a horror - it is my favorite) TEAM EDWARD!!

2. Bath tub or Hot tub?
I'm going to say bath tub, though I love hot tubs. Public hot tubs are just the nastiest, germiest mess. I don't want to cook in someone else's body stew. Ewww.

3. Do you prefer to view a movie at the theater or at home?
Depends on the movie. I love comedy and action movies in the theater. But dramas (where I know I'm going to cry) or horror - I prefer to watch in the privacy of my own home.

4. If you could chose a maid, cook or chauffeur, which one would you choose?
I thought I would always say maid, but CHAUFFER. I HATE/LOATHE/DESPISE driving in Atlanta traffic 64 miles, one way, to and from the Children's hospital. It can take anywhere fro 1.5 hrs to 3 hrs to get there in the mornings depending on accidents and if it is raining. Yes, I would LOVE a chauffer!

5. Electric Slide, Boot Scootin' Boogie, or the Macarena?
Lord, really...I have to pick? I guess the Electric Slide, but only at weddings. I do remember doing the Macarena at all the high school games. I was on the highschool dance/flag team and nerdy, so it was allowed back then. Not now. ;)

Candles

2 Corinthians 4:6
For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.

Today is Pregnancy and Infant Loss Remembrance Day. Today people throughout the US and Canada will unite and light candles at 7pm to honor the tiniest and sweetest of lives. It's a day I grieve for my friends' children, the children I will wait to meet in my next home. It's a day I never knew existed until last year when a friend sent me grief support group information when we were told our son "was not compatible with life". My son is here, their child is not. It doesn't seem fair...

I'm an outsider looking in on a courageous group of women. I see the grace and strength in these women that I can not hold a candle to...but I will hold a candle for. I will light candles for their children - for what was and what will be one day. A light shines in the hearts of all of moms and dads and grandparents and siblings, a light to cover up the hole that is missing. But one day, that hole will be made whole again...just as their child was made whole and healed in heaven.

Personally, I felt like I was dealt a trick deck of cards in life. If two moms where told their child was not to make it, how come one is still here. Believe me, I'm grateful and delighted in the fact that Matthew is here, and I wouldn't change that for the world! Yes, he has had a hard life, but he has also known love, laughter and family. I feel, for lack of better word, guilty...especially to my PUV friends. Same diagnosis - different outcome. All because of a doctor? Doubt it. All because of a depth of love? HARDLY! All because of our faith in God? Maybe...

Perhaps our path to God was different...we needed to learn different things...be tested different ways. Like how someone endures a house fire and someone else is faced with life in a wheelchair. Each trial is hard, but each will teach different things. Ask a professional athlete which s/he would rather endure...then ask a millionaire. I bet answers might be different.

God's lessons are different for each of us too. And even though I've been through the grief of "loosing" my child, I've never buried a child. And even though their hearts hurt SO much for missing milestones, they rejoice their child missed the pain of living with his/her disease.

Please, at 7pm tonight, light a candle for all of the parents of angels. I will be lighting candles for Baby Nels, Baby Matthew and Baby Vayden - all PUV babies. Such beautiful boys, such beautiful mothers. Help remember them.

housekeeping on the blog

Alright I'm going to do a little "tweaking" with my blog today, tomorrow, next month - you know...however long it takes before I throw the laptop down the stairs with a satisfying smash. :)
Please bare with me as things get a little disorganized around here. Hopefully things will be good by next week sometime. Gotta do it in spurts and the darling hubby has reserve duty in Savannah this weekend, so it will take a little longer than it would have. Wish me luck! If you see things look the same this time next week, then know I cowardly gave up. :)

Wow!

What a difference a weekend makes! Matthew now has three new potential donors. EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! That was my shriek of delight incase you didn't recognize it. :) Three people to selflessly volunteer an organ for my son. Who does that?? The parents of course and yes, my mother the grandma. That's my child, that's her grandson...we would do anything! Heck, take both of my kidneys and hook ME up to a machine!
Just a brief introduction of our new saving graces and kidney heros. :) The first is my wonderful SIL, Kristen.

This is a picture of Matthew and his Aunt Kristen and cousin Leah (and cousin Kelsey...though we didn't know she was a she at the time) last August when Matthew came home for the first time. He was only home for the weekend and then back at the hospital...but still...good memories of being home. :) Kristen was helpful even before Matthew was born. Watching William on several occasions while I had to get a needle in me or a standard check up. I always thought my brother "picked good", but now I see how off I was in my rating system. He picked AWESOME! It's not every day someone offers your child a kidney, especially someone who has only been married into the family for 5 years! I think we can say hands down - Kristen wins for favorite Aunt!! :) And I can say, hands down that I can't thank her enough for volunteering.
I do not have pictures of our other two volunteers...which makes them a whole slew of special. :) Marie and Steve, my Aunt Ellen's friends, have emailed me to request donor packets. I have met Marie one time, 10 years ago at my cousin's briesmaids' luncheon. ONE time. I do not remember her husband, though I'm sure he was at the wedding too. These are two people that have never laid eyes on Matthew and they are willing to give him something they have never seen before - their kidneys. Holy crap! Seriously...that's all I can think. I always said I would be willing to donate to anyone who needed something I can spare, and of course when I die everything is up for grabs (well, everything besides my defective kidneys...). I wonder if I would actually be willing when time came. I did offer to donate for my friend's daughter when she was undergoing a liver transplant. I will offer again when this one wears out. But someone I never met...never thought about it. But seriously, I got emotional when my aunt told me. I freely admit to blubbering like an idiot. :)
So here we stand, back at three potential donors and HOPING, PRAYING it doesn't end up like our original three donors. Ian is still going to do his test and keep things moving on that front, in the event no one else is a match. But if someone is a match, we will scoop them up and send Ian to fire fighter school. And get a paycheck that might get us out of the red zone! :) Gonna need it for those immuno-suppression drugs. YIKES! We have a new plan for a new kidney with new potential donors. My heart is happy and my mind is at peace. I am moved and grateful. I am humbled and hopeful. AND - I have a plan thanks to Mama M's giveaway today: http://fivecrookedhalos.blogspot.com/2009/10/amazing-giveaway.html
I have an idea of what I'm giving the potential donor when they wake up from surgery. OK, the next morning when they are less likely to cuss me out because they want their pain meds. Just have to make some decisions. It's all about the decisions. Decisions from some awesome people that I can only say WOW about.

Five for Friday - Matthew style. :)

OK, I'm normally involved in a blog carnival that Mama M hostesses on Fridays every week, but this week I'm kind of stepping out on my own. (just for one week though and to answer ONE question - COKE!! It's all about the Coke in the south (especially in Hot-lanta were the World of Coke is located!). I am just listing 5 things I am thankful for. Yesterday, I got some bad news that kind of put a damper on my spirits. And I'm really a happy, optimistic person - yeah...not so much 24 hrs ago! :( But I've accepted the hand that has been dealt and all is well on the Karen front once again. :) So, without any more of my rambling (I ALWAYS end up doing that!) here's my friday five:

1. I am thankful that in my attempt at saving Matthew's life, he just turned around and probably saved mine. I found out I have stage 2 kidney disease only because I was tested to be his donor. I don't have blood pressure problems (hello - 105/65 here!), no protein in my urine, no excess sugar, no "warning" signs of an issue. And the fact is, most warning signs are not shown until it is too late. Kidney disease is progressive...you do not get function back. But I can now keep appointments with my nephrologists, change my diet and maintain kidney function as much as possible. Thanks for looking after your momma Matthew. :)

2. I am thankful that I have such wonderful family and friends. Family that are willing to get tested, friends that share our story with others and everyone that prayers for my son. Prayers are the most important gift you can give us anytime. We don't need money, clothes, food...we like the free things - laughter, hugs and prayers. :) We greedily take those and luckily we are surrounded by people who happily indulge us. Thank you!

3. I am thankful for Matthew. He is here and he is chewing on my couch. Not necessarily thrilled with the soured spit smell that will rise from that this evening, but he's here to be able to leave a little puddle of drool. He is crawling (something they said he wouldn't do), he is laughing (something I can't get enough of), and he is tooting (something I could do without). But he is HERE, NOW, WITH ME! Some mom's don't get that chance. I am so blessed. If I get to spend one more month or 1,000 more months...I have been made a better person because of him.

4. I am thankful for William. I often feel like William gets the short end of the stick with all the goings and comings of Matthew. But then I realize that William gets compassion, patience and will learn not to judge others based on their "label" because of Matthew. WOW! That's pretty cool! He is SO funny and super snuggly. He's our handy man helper-outer. Our go-getter introducer that says hi in the grocery store or the library. He's our car fanatic that introduced us to the special people like Mater, Doc, Sally and of course Lightening McQueen. Life would just be a bit duller without him. He colors our world. :)

5. I am thankful for my husband, Ian. Without him I would have drowned in sadness when we were told on three separate occasions to terminate our child. I would never have understood and appreciated the military wives that are left behind to be mother and father, husband and wife, lasagna maker and lawn mower. I met a GREAT group of women (and men) through him and the Coast Guard. He has stepped up and over the boundary lines set forth by society and became "house wife" for nearly 7 months when we went without a paycheck to our name and me laid up on the couch with fetal surgeries and then a c-section. He is willing to give up his current dream job and search for "brotherhood" in the fire department to begin testing for our son's kidney transplant. This October is our ten year "dating" anniversary. God bless the man that could put up with me that long. ;) I love him!

Of course there are many more, but I am keeping with the Five theme. So, more to come! Have a happy weekend all! Please still check out all the other women who followed the rules from Mama M. And sorry I stepped out...just had to get these down. :)

Broken heart, broken kidneys

It seems I am not to be the donor for my son. I called over to Emory this morning in hopes of getting my 48 hr urine test on the way. No such luck, it's been put on hold. Though a nephrologists does want to see me. I have stage two kidney disease. They did a GFR (Glomerular filtration rate) to test my kidney function by collecting 24 hrs of urine and then a blood test to test serum creatinine in my blood to contrast that with the creatinine levels in my urine. They want to see how much creatinine is being excreted, but also how much creatinine is left in my body. Normal level range in 90 - 120. Mine is 82. Not bad, mild damage to say the least, not donor material.

My heart is breaking. I want my son to feel better and here we are again at square one! Another two to three month process now for my hubby...who is still in the interview process for a new job. A physically demanding job that he will not be able to do the physical requirements of if he is having his kidney taken out in December. Started with three potential donors - now down to one. Damn my pride.

I went to a VERY bad place after receiving the news this morning. I'm fortunate in that I "bounce" back fairly quickly. This obviously is how things are meant to be in the long run. I need to be with my son during and after surgery. I know him, his medications, dosages, reactions and labs. I've been there for all of his surgeries, some by myself in the waiting room. It seems I'll be doing that again for transplant. Hubby across the street, his parents with him, my parents with William. I can handle it. I've handled it all. But seriously...DARK place this morning.

I have signed my donor card, all in honor of Matthew. I was thinking in my mind how I could "cheat" the system. Re-write my will to say that Matthew is to get my organs if I pass before him and he is currently on the waiting list or under-going dialysis treatments. Then I would over-dose. I'm NOT going to do that. I just felt like I could this morning. I just want my child to stop hurting. I DO NOT CARE IF I AM ON DIALYSIS IN TEN YEARS!!! I just want to make sure my child is here in ten years. Hell, his butt could finally drive ME up there and make it full circle. ;)

I was talking to a friend this morning about how all mother's know what it is like to see their child in pain. All mom's can empathize with that. A broken arm, diaper rash, ear infections - all are BIG deals to that mom, because that is her child. She would do anything to fix them or make the pain go away. That's what I wanted to do, but in an extreme and selfish way. I'm good I tell you! I'm just sad, not suicidal.

I will do what needs to be done next. I will continue to take my child to hemodialysis twice a week. I will administer medicines at home. I will monitor his blood pressure twice a day and chart it. I will give him bolus feeds every three hours through his g-tube. I will sit and wait to hear word from my husband's surgery and my son's surgery. I will care for both of them as they are on the mend and recover. I will not give him my kidney. I guess my heart will have to be enough for now.

Five for Friday with Mama M

Rule rundown...copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop code and link up!! And I would be Mama Grateful if you linked back to me! BTW, if you don't have a blog of your own, but wanna join in, just leave the comments below!
Alllll righty-then! Here we go (thanks to Amanda, Sandy, and Liz for questions or inspiration! Want to contribute? Join the conversation in my BlogFrog Community!)

October 2nd Questions:

1. What is your favorite ABBA song?
I also loved Mama Mia. I saw it for my birthday with my MIL and then turned around and took my mother to it too. :) Dancing Queen is probably my favorite from ABBA, but I did love the movie version Lay all your Love on Me. :)

2. The thing you love most about fall is...
Football baby! But I also love the lower humidity. I can go sans pony tail since I don't have humidity induced "poof" in the fall. :) That's always nice. I also love the show by mother nature. I lived at the beach for about 4 years and REALLY missed it. Now I live in the mountains and can't see going anywhere else!

3. What store you would love to spend to heart's desire (money is no object)?
Can I pick two? First the grocery store - I'm having a love affair with food. ;) And then Victoria's Secret...only because if I keep eating, I'm going to keep going up in size and will eventually need some secrets to hold it all in again!

4. What is your favorite snack food?
potato chips or nachos are my favorite "official" snack foods, but I snack on salads quite a bit. I have at least two a day...just a salad kind of girl. (and no it's not a healthy salad - it's slathered in cheese, bacon bits and croutons) :)

5. What was your first car?
A sturdy but crappy Chrysler LeBaron. I called it the silver bullet...before I knew about the "adult" industry and certain names of products. ;)