The test

I was one of "those" students. The few that actually cared about my grades. I would enter into friendly competitions with my friends about scores on exams. I had a photographic memory that when I looked at a couple of pages prior to a test, would ensure an A+. If I was too busy flirting (which happened a LOT) then I would scoot by with an A-. Never had test anxiety and always the first to turn it back in to the teacher. Yep...I was a nerd. :)
Since I've entered the "real" world, I've never had to solve a physics problem without the aid of a formula. I've never had to multiply by decimals without a calculator in hand. I can easily use spell check or my co-worker if I come across a word that I can't remember the correct spelling. Frankly, the education system taught me many things (stoichiometry anyone?), but I wasn't prepared for the BIG test.
A test from God. A test I have unfortunately failed.
Often in my life, since my son Matthew's birth, I feel like I failed him in some way. He was born without a urethra, and it caused irreversible kidney damage when his urine back-flowed while in utero. I even went as far as blaming God for not making me strong enough to make him perfectly, without this defect that would be life changing and one day....may be life ending.
Due to this one little defect, a missing link of tubing that is connected to the bladder, my son has endured 26 surgeries in his short 3 years of life, including a kidney transplant. He had a beginning at the bladder and an end at the tip, but nothing in the middle. I was told the doctors might be able to reconstruct a urethra for him one day, but it would be complicated and might not work.
Through out these past four years (well, 4 years in 3 days - as that is the day we found out about Matthew's condition during my pregnancy) our family has been tested. I've been tested. Tested to give up control (a HUGE thing for me!) and as I have said often "let go, and let God". I had THOUGHT I had done this.
I have given my son's life to God. Both before and after his birth. When I failed the medical exams for being a donor to Matthew, I once again left it up to God. And WOW! He showed me He really did know better! I thought life and death was enough. Now I've learned it isn't.
Yesterday, my son was scheduled to have another operation. Shortly after beginning, I was told to meet the surgeon in the consult room. The doctor informed me they didn't do the surgery as planned, purely because there now wasn't a need. Matthew has GROWN a fully functioning and complete urethra! The doctor, the same one that has been working on my son since birth, couldn't explain what had happened. He just shook his head and smiled. He said if he had only looked once before, then maybe he might have missed something. But he's looked MANY times - several on ultrasound, VCUG scans and even opening him up to do exploratory surgery...nothing. Nothing even in October when Matthew had his last scan.
Now all of a sudden - something!
Something fully healed and perfectly made.
Just how my son was made. Just how God made my son.
I know understand my test. My feeling of failure was purely a selfish and unnecessary issue with my own sense of pride. I didn't fail him. God made him in a way to show me that...that's it's not about me! It never was. God made Matthew to do things that the doctors said he never could. God made Matthew to take matters in his own hands, inside his own body to heal and prove them wrong.
That things can't always be explained by science and medicine...somethings are just left to God's timing. Perfect timing. For a perfect boy...that was perfectly created. And I am perfectly thrilled to know I had absolutely no part in this miraculous healing.

Going with the Woe

Bad things happen to good people. Things not in our control; things that leave us shaking our heads; things that make us ask "why my family?". A five year old little boy is dying from cancer. Cancer caused by the medicines his body needed to keep his transplanted kidney. There is a fifteen year old daughter and sister, who was unable to attend her parents' and siblings' funeral because she was still hospitalized in Florida while they were buried back home in metro Atlanta. Random acts of violence, natural disasters and even house fires turn many families lives and dreams upside down.
It would be easy to give into the "woe is me" mentality. I've done it. Woe is me for having to watch my son go through so much. Woe is me for having to spend so much time away from my husband and other son, because my baby needs me right now. Woe is me, another year without a vacation...gotta save that many for medical co-pays. Then I hear about a child losing their fight... and once again I am grateful.
It shouldn't be that way! We should always be grateful! It shouldn't take bad news to make us feel happier about our life and all the blessings in it.
I know there is a greater certainty that I will outlive my son.
That knowledge has left me breathless and broken-hearted. I can't count the times I have crumbled in the middle of the night, wracked by sobs of sorrow. The only balm I have - is right now. Whenever my fear creeps in, the uncertainty seeps through or the darkness covers my rays of happiness...I just look at him. And I'm grateful.
Grateful to have this experience. Grateful for whatever time we have together, whether it be counted in days or decades...it's more time than I was told we would have before he was born.
So instead of letting the "woes" build up - we let them go. Turning woe into wonder, sorrow into smiles and fear into faith. Faith that we will handle anything that comes our way. Smiles that we made it together this far. Wonder in the normal, everyday experiences we get to share.
If my son has to fight bigger battles ahead and tells me he is tired, then I will let him go...and I won't have any "woe". There will only be the joy of what we had.

Healing

Some of the kidney momma friends have been talking about guilt. The guilt we harbor with our kidney kids. Naturally all parents have guilt - too much tv, too much junk food, not enough one on one time. It's in the fine print of the pregnancy books (when the little bundle is handed to you, with him/her comes a life time of guilt for not doing enough or for over-indulging too much) With Matthew all of that was magnified times 1,000!
I went through my pregnancy with an overwhelming feeling that I did this to him. Had I not over-exerted myself (moved twice the first 3 months of pregnancy), then my body could have handled making a little person. I know that's not true, but that's still what was in my head...and sometimes still sneaks back in every once in a blue moon. Guilt can eat at you, make you depressed and cloud your mind with poisonous doom and gloom.
I have a confession that I have NEVER told anyone before. Two people very close to me announced their pregnancies within a month of me giving birth to Matthew. Granted - he was a bit early! But even though I was happy for them, I was sad for me. I hope I didn't show that side, I tried my hardest not to let it out. I mourned the fact that I didn't get to have a "happy" pregnancy. My pregnancy was full of uncertainty. I didn't register for gifts, I didn't pick out clothes to bring my baby home, I didn't even paint his room or get his crib ready until he was 6 weeks old and getting ready to come home. I wish I had been able to see my baby when he was born; he was whisked away.
After Matthew's arrival, I had trouble going into stores, especially stores with baby departments. Target would reduce me to tears when I walked by the bath toys that Matthew could not play with due to his dialysis catheters. I loathed the grocery store baby aisle - being forced to walk by the baby food my son wouldn't (and couldn't) eat to get to the diapers. While at the library, hearing another mom complain that her child was growing like a weed and soon wouldn't have anything to wear. My child stayed in 3-6 month clothing for 5 months. 9-12 month clothing for 8 months. I prayed he would outgrow something.
Then transplant happened and as Matthew started to heal - so did I. I didn't realize how far I had come until just recently. I'm ready to hold babies again (other people's - not wanting my own!), I'm ready to share Matthew's story without tearing up. My faith was tested and my heart purified. My friends have been whittled down to true friends that will stand by me now matter what. My eyes have been opened to a whole new way of life. And I have been given that most precious knowledge that no matter what - life is sacred and wonderful...even if at that moment it down right stinks.
I'm happy. Two years ago, I never thought I would be happy again. But I am - truly happy...for everything. Happy, healed, whole - like Matthew :)

shoes

Have you ever needed a certain pair of shoes for an event and borrowed some from a friend? They don't really fit right do they? They are already molded to their owner's feet - not yours. Good news - you get to take them off eventually.
However some people are left wearing their shoes for much longer. The grow to be uncomfortable and tight. They pinch the toes and blister the heels. You long for another pair - a pair made just for you...your comfort in mind. But you are left waiting it out. And even though your feet are swollen and aching, and your shoes are scuffed and worn out...you appreciate the fact that they were given to you.
My shoes were given to me the day Matthew was born. I don't know who the previous owner was, but I am grateful for the hand-me-downs. The shoes I had were "caretaker" shoes, and they are the hardest shoes to fill!
Whether you are caring for your mother during hip replacement and rehab or a cousin with leukemia...it is equally daunting. It is never ending. There are no ribbons for first place - there is life. You won't get a medal for going the longest without sleep - you'll get exhausted. If you can not find the energy to bathe and feed yourself at the end of the day, then you'll just be smelly and hungry that night.
No one understands a caretaker more than another caretaker. We all hope for the other one that their amount of time in our shoes is short. But some will never take off their shoes - ever. Some mothers to babies with debilitating diseases will never know what it is like to soak their feet in a pool of warm water. They will leave this world only with worry in their hearts as they wonder who will watch after their child now that they are sick and leaving.
I'm lucky! I was able to upgrade. I left my painful shoes at the door and took up new ones that only give me some discomfort once in awhile. ;) At the end of the day, when all are asleep...I take off my shoes and rub my aching feet. I put them back on in the morning, wearing them with pride. How can I not smile with Matthew by my side! (totally didn't mean for that to rhyme...that's how if flowed in my mind!)
How are your shoes fitting? Could you stand for them to be a little tighter? I'm sure most of you could. Go volunteer at a hospital, homeless shelter or nursing home. Help someone by enabling them to take off their shoes and breathe a sigh of relief - just for a moment. It will mean the world to them!

Donor awareness month

This is the flag that flies at Children's Healthcare of Atlanta during every transplant surgery. This is the flag that flew on January 14th of this year for my son's kidney transplant. I still get choked up seeing this photo. It takes me right back to the moment, the moment life was going into my son on an operating table. All because someone was selfless enough to give the gift of life.

This April, I beg you to search your heart and talk it over with family and loved ones. Please consider being an organ donor. Research it, find out how to register for your state by visiting this site (http://www.donatelife.net/) and give someone a second chance. If everyone had a loved one that's life was dependent on a list...we'd all be registered. Please help them. They are people (daughters, brothers, grandmothers and best friends). They are not numbers.

Give them hope - give them life. Register.

Music for my soul

I need music. Music is a form of prayer to me. It speaks to my soul when I'm too close minded, frustrated, hurt or checked out to listen to others. I kind of checked out this afternoon. Just went to my bad place of hugging my knees to my chest as sobs came freely. It is therapeutic...but I'm a mother and can't do it often. Matthew was taking a nap after we got home and William was decorating a gum drop Christmas tree with my father in law. I had a minute to myself...and lost myself. Lost my will. It's back. I'm back. I'm ready to fight for my son...for his rights. To move things along and take things as they fall. Just writing down some of my favorite lyrics for days like these:

Little Wonders - Rob Thomas

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels


There can be Miracles - Prince of Egypt

In this time of fear,
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles
When you believe
All hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe


The Prayer - Celine Dion

I pray you'll be our eyes, and watch us where we go.
And help us to be wise in times when we don't know
Let this be our prayer, when we lose our way
Lead us to the place, guide us with your grace
To a place where we'll be safe

And of course the song I always go to when I think of Matthew. The song I included on his section of the Christmas video I did on my boys last year. Oh how I love my gift from above. :)

Winter snow is falling down
Children laughing all around
Lights are turning on
Like a fairy tale come true
Sitting by the fire we made
You're the answer when I prayed
I would find someone
And baby I found you
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift
Watching as you softly sleep
What I'd give if I could keep
Just this moment
If only time stood still
But the colors fade away
And the years will make us grey
But baby in my eyes
You'll still be beautiful
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift

The gifts

Tomorrow is my baby boys first birthday (even though...techinically he's still 10 months old). I have bought all the necessary birthday shindigs...balloons, centerpiece, cake, plates, napkins, presents, cupcake hat with ONE birthday candle - OK, not all of the things were necessary. :) But really, none of that matters. It's just to put pictures in the baby book so we can look back later in life and remember the day. None of what I have bought him compares to the gifts he has given me in return.
This one small little guy is responsible for making me get back on track with God. I had stopped going to church, we had stopped having family prayer, I had started taking things for granted...no more. He has made me question my "religion" and find a new faith through The Word. I now find myself trusting in God more than relying on monitors and lab results. My child has already defied the odds anyway...what do the statistics mean to us?
My son has given me many small things that add up to make me a better person. I'm more well rounded you could say. Before if I couldn't put myself in your shoes...I just figured you'd be able to make it out ok...everyone does right? But through Matthew, my compassion and empathy have strengthened. I no longer turn a blind eye to children in distress. I freely admit to not being much of a "baby person" as I grew up. I would much rather hold a puppy and a child. Never even thought I had the "mother gene" in me until I gave birth to my first son, William. But when Matthew came, I wanted to mother all children...sick and healthy. I now have a special place in my heart for all the babies and children that reside in childrens' hospitals around the world. I find myself stopping in hallways, in doorways and in the parking garage to say Hi, wave at or share a smile with a "sick" child all the time.
My son has gifted me with strength, a strength I never knew was humanly possible to achieve, but now I see it all the time in a mother's eyes on the transplant floor. I've always been a fighter...but now I see I never really had something so important to fight for before. I never held the option of life vs death on a sheet of paper that had my signature on it. I never knew how hard it would be to deny your child the one thing all mothers are supposed to be able to give freely...food. How do you comfort a newborn that is hungry but has to be NPO for surgery? How do you tell a two month old the pain will be better tomorrow after they just put a hole in his abdomen and had opened up and sewn his bladder to his abdominal wall because that is the only way your child can urinate? How do you hold down your child to do hourly blood draws to make sure his potassium is decreasing so he won't go into cardiac failure? You just do...and you don't even think about it. Mommy's are not allowed time outs for good behavior or for difficult roads. That's what makes us mommy.
My son has gifted me with passion. A passion to learn more about being a living donor and organ transplant. A fire to share our experience and get the word out about the gift of life and hope. As the saying goes: don't take your organs to heaven, heaven knows we need them here. I have a deep need to help other pregnant moms that are given a poor diagnosis. I will continue to fight for the unheard voices of the unborn baby. I have gone on many mommy war paths with doctors, nurses, insurance companies, pharmacies and even family members that just don't get what kind of ordeal we live in day in and day out. I've always been pretty outspoken to begin with...but now I'm a loud and proud mommy to a preemie miracle that is plugged in to a machine twice a week that keeps him alive while waiting (with very little patience) to gain and grow and receive a kidney.
My son has blessed me with appreciation. I appreciate the fact that he can be helped. Even though this will be a life long journey, with many transplants to come...for years in between...he will be allowed a "normal" life. I appreciate every little bite his mouth takes (which isn't much, maybe a spoonful a week of something) and it makes me less "harpy" on my older son with his eating habits. I value the alone time we get each week together. I get lots of alone time with my older son since Matthew still takes three naps a day...when you are not making red blood cells...you tire easily. But I get several hours of one on one time with Matthew during hemodialysis. Not an ideal place, but neither was the NICU. And I even said then how much I would miss the one on one time...God answers doesn't he! ;) I appreciate every pound, every inch, every milestone. No matter how far off the charts we are...no matter how long it takes...we are getting there! I appreciate everyone's prayers.
My son is a wonderful little ball of boy! His laughter is infectious, his smile endearing and his feet...well they are very flexible and chimp like. ;)So, on my little fighters first birthday tomorrow, I want to thank him for all of his gifts to me. In no way will I ever repay him, but I hope a healthy working kidney will be a small fraction I can make up. I really am blessed, and I love him with all of my kidney (and heart and soul too). Happy birthday fighting Matthew...here's to many, many more. :)

Mother's day 09

This will be my 4th Mother's day I have celebrated. My first mother's day, my infant son (William) was only 3 months old, and I left him for the first time ever to go have dinner with my husband. I cried pulling away from our friends' house that were keeping him. I quickly got over it has I enjoyed a dinner at the Oceanic Restaurant located on the beautiful Atlantic Ocean in Wrightsvill Beach, NC. (if you are ever in the Wilmington area...check it out...LOVE IT!)





Actually, each mother's day I have gone out...except last year that is. But the day after, I did go a get a needle in my stomach...does that count as going out? This year, my husband asked me where I wanted to go. I told him nowhere. I just want to be with my boys, all three. Last year at this time, I didn't know if it would be the only time I would be having a mother's day of two precious LIVING boys. And now, I have been blessed to have two beautiful boys in my home to love on daily. Honestly, what more could I want for the day?

But my husband is not easily appeased with my "nothing" request. All males are bound and determined to wrap something up aren't they! So, I just asked for a new book to read. I did have a few other requests as well...but those were free. ;) (One...I will not type out loud - I'm not that kind of lady...well, I am...but I'm trying to be well-mannered). I did request a nap! I also requested a bubble bath (in which to enjoy my new book), and a rub down with lotion once I am out. I did ask for a day with NO medical intervention. I will not draw up medicines, administer medicines, clean dressings, tube feed any solids, set up the nightly pump for tube feedings and I get a free pass on diaper duty too. :) My request is to be a "normal" mom for one day. Because I see my son as a "normal" boy...that giggles and plays with his feet and prefers cotton candy over peas. The only thing that makes him look sick is all the crap I do to him daily! So...not doing it for one day. I'll pick it up again in 24 hours with clinical precision as usual. I just want a day to enjoy my kids...both of my kids. Where only we exist, no hospital stays, no dialysis, no life threatening kidney failure. That would be more of a gift to me than any fancy restaurant, showy jewlery or expensive clothing item that comes in a box.

To all the moms out there, please do not take your kid(s) health for granted. There are SO many mom's out there that are praying for that gift every day. Happy Mother's day to all the mommas out there! God bless you and your little blessings. :)