Wednesday, October 28, 2009


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" 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 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 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.


Mindy Skains Barefoot Book Ambassador said...

I am praying and Know that the Lord is with you always,

Randi Jo :) said...

you go girl --- do what you have to do and God will make the best of it. It will be okay it really will. The boys have each other!!! Imagine how much harder it would be if you were stuck inside and just one baby - no playmate except mommy & downy all day every day. I'm soo happy that the boys have each other! This time will pass, it really will - it IS just a season and I love how God used nature to soothe your spirit in that way! :)

maybe just maybe wow could this be a blessing in disguise!? To be able to get some true, real, wow, nitty gritty, no distractions, no family drama, no hurrying around... intimate family, the 4 of you (5 if downy) TIME! :)

p.s. will hubby to the grocery store too - I'm sure the public areas even like that are germ invested?

love ya :)

Randi Jo :) said...


Groettum Family said...

I found your blog on MckMama's community...could you Skype with your family during the holiday parties? That way you can say hi and interact without actually being there? Good luck with everything, you sound like one strong mama!

Elizabeth said...

Hey girl sorry I disappeared for a little while. We'll keep you company here. It's not the same, I know, but hopefully at least you know that someone is thinking about you. said...

I am saying prayers that Matthew has a kidney very soon! What an amazing near Christmas present! I understand the going into hiding. You do what you have to do to protect your child.

heather said...

no words...just love for you and your family.

Julie said...

I can't imagine what you are going through. But I would not feel one bit bad for "going into hiding". I "hide" a little every winter and it is with my son who has asthma and seizures (neither of which are as germ affected as your son's transplant issue).

I saw your post on Blog Frog. I would never apologize to anyone, family or not, for protecting my children. Sure, some may not "get it", but chances are, there are things that some family members do that you "don't get" either, i.e. would never let your kids do. So, looking at it that way, you're all even.

We have to look out for our children. No one else will and they can't do it themselves.

Good Luck! said...

Hi mama, I know I've probably asked you this a million times. I know that you're super busy but wanted to let you know of a Dialysis babies group that I have. It's a yahoo group and all the babies are on (or have been on and have recently received a transplant.) It's really a great group of women. it's not an incredibly busy group so it wouldn't clog up your inbox. But, it is such an awesome resource since there aren't many like our little men. If you'd like an invite just send me your email address.

I am praying that Matthew makes that 10 kg mark very soon and that he has a new kidney VERY soon! It's his turn! I know we did a dance and probably called everyone we knew the day Logey hit 10 kg. Somehow just hitting that milestone was so huge to me. To see them with their new kidney is worth every challenge and every trial. My friend Tara and I would talk before our boys got their kidneys' that they were very happy boys. They didn't know they were sick. To them, it was just normal. But, since they got their kidneys, they KNOW they are well now! It's like they need to live every moment of the day to it's fullest. It's truly watching a miracle happen. I don't know how anyone watching could not believe in God. The way he creates such an intricate plan which is so much better than anything we could have ever planned. Anyway, sorry for the rambling. I am praying you guys stay well and your little guy has a new kidney soon, however God sees fit to give it to him.

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