First and foremost, I am forever grateful to God: who loved and trusted us enough to put Matthew in our lives.  And now that he is here, I am grateful to God for every day He gives us together as family.  For the strength he gives us to get through the hard times and for the amazingly happy good times.  We chose the name “Matthew” because it means, “gift of God.” It couldn’t be more fitting.

I am grateful to the doctors and nurses and hospital staff who brought Matthew safely into the world in the middle of the night since he couldn’t wait until my scheduled c-section and sent me into unexpected and fast-moving labor instead.    I am grateful for sound of his first cry – which is what we had been praying for since the biggest concern for his survival was his lung development.  (That would be the last sound I would hear from him for about 2 months.)  I am grateful to the NICU resuscitation team who did exactly what their name implies – resuscitate him after that cry made both of his lungs rupture.  I am eternally grateful to the doctors and nurses of the NICU who literally saved his life.  I’m grateful because they never even for a moment gave up on him.  Even when he had to be on an oscillating ventilator for his first three days of life, even when he was still on a ventilator for more than two months, even when he failed extubation three times.  They never told me he would die, just that he wasn’t ready to breathe on his own yet.  They didn’t just care for him, they cared about him – and that made all the difference.

I am grateful to his Nephrologist (kidney doctor) who gently guided us through his diagnosis of renal failure; through our journey to accept the fact that he needed dialysis and would need a kidney transplant; and through every step since then until this very day.  Words cannot begin to express my gratitude for his amazing surgeon.  This kind and gentle man has held my son’s life in his hands 12 times now.  Every time Matthew has come out healthier as a result.  I cannot imagine Matthew having surgery without this man’s hand on the scalpel…and he makes beautiful scars, as straight as an arrow!  And I am so grateful to the amazing nurses who have come into our life at the hospital and at home. 

I am grateful to our family and friends, who have been so incredibly supportive to us through this whole journey.  Who have stepped up to help take care of Lala for us and who have come to take care of us for us sometimes!  It’s hard to understand our hypersensitivity to germs, illness, and potential allergens, but they really try.

I am grateful to the amazing network of parents that I have met who also have children with renal disease.  A stronger, more determined, more loving, more supportive group of people you will not find.  I can’t describe the comfort and relief it is to know other people who are dealing with what we are dealing with.

I am grateful to my amazing daughter, who instead of being jealous of the attention her brother gets loves him with her whole heart.  She has more empathy than most adults and I couldn’t be more proud to be her mother.

I couldn’t express my gratitude without including Tom.  For being my partner, for doing more than his share at the times when all that I had wasn’t enough, for working so hard and for loving his family so much.  But of course, most of all, for giving Matthew the gift of life.  For saving his life, for being his hero and in turn being mine.

And as the orchestra starts to play me off the stage, I want to conclude by thanking each and every one of you.  Thank you for thinking enough of Matthew to read this blog, for caring for him, loving him, and most of all for praying for him.  

Happy Birthday to my incredible, miracle boy.  Wishing you many, many, many more.  I love you so much.

Since I introduced you to him, I wanted to give you an update about him.  They found a hero!  Zachary had his transplant yesterday and so far is doing well.  Best of all, he is making liquid gold, pee pee, you know, urine! 

If you have a couple of minutes, check out his website.  http://help-zachary.com/  If you only have a couple of seconds.  Please say a prayer for him and his family and all those involved in the transplant.  

And if you are not already, please become an organ donor and let your family know your wishes.  Living donors are amazing people, but recycling your organs when you are finished with them is amazing as well.  You only have to check a box to save lives and you will be a hero too.

Part of our life with the boy is living in fear.  Although he is quite stable at the moment, things with him can change so fast.  Maybe I know too much.  Maybe it’s the affect of having friends who have lost their children to kidney disease.  Or maybe it’s knowing friends whose children are getting sicker and sicker as they wait for another transplant after the first has failed.  You see, people think that when you need another kidney transplant, you just get one.  But it doesn’t work that way.  It is often very hard to find a match for subsequent transplants and there are often a lot of other complications standing in the way.  (Check out my friend Zachary’s fight:  http://help-zachary.com/). 

Every day, I live in fear that Matthew will die.  Every day I kiss him at least once for Aidan and think of the shell my life would become if I were to lose him. Yet every day, he grows and develops and is so full of joy and happiness.  I have other friends whose children are several years post transplant and going strong.  I try so hard to think of them as much or more – especially of Bryan, who is now 19 years old and has had his mama’s kidney for 14 years and is doing great.  Then things happen like Matthew’s recent pneumonia diagnosis.  His only symptom was a high fever – which came and went so fast, we barely noticed it.  Never in a million years did I think he had pneumonia!  It got me thinking, “I worry about so much, all the time, but it’s always something that I wouldn’t expect that happens.”  What good is this fear doing me, anyway?

The other day, Tom and I were talking about how we just cannot believe that Matthew is about to turn 3.  Certainly no longer a baby, it seems even his toddler days are numbered.  I got him a potty to start potty training; I’m considering when to move him to a “big boy” bed; and I’ve recently had to shift my thinking to start to plan for pre-school.  We were talking again today about how our children are just growing up so fast and Tom said that they are growing, but we are stuck.  He said that we are stuck in the survival mode that we were forced to enter to deal with the critical time surrounding my pregnancy, Matthew’s time in the NICU, and while he was on dialysis waiting for transplant.  We haven’t been able to shift our minds out of that phase and into the “good times” phase.  Matthew’s milestones sneak up on us sometimes.  He no longer needs to be pumped full of fluids while he sleeps at night.  He is eating a larger variety of foods and even starting to experiment with new textures.  He is communicating more clearly and effectively every day.  We know full well that there is no guarantee of how long the “good times” will last.  But when we were talking the other day, I had the same realization that I had so many years ago about our wedding.  What happens when Matthew turns 25 and he has had a happy, healthy life, and still has his dad’s awesome kidney, and I realize that I have spent the last 25 years living in fear? 

I could live for today and not let myself think about anything negative happening to him (impossible) or I could live gripped by fear and cry every day over the what-ifs (dangerously possible if I let myself).  Neither  would alter the course of the life that God has planned for Matthew.  It will only change the value of the time I get to spend with him.  If you have been reading this blog for a while, this theme is familiar to you.  It is not the first time that I have resolved to stop being afraid.  Maybe only if you are also a kidney parent will you realize what a daunting resolution it is.  But I’m trying…

For a long time, all of the people in our life were in it before Matthew.  They prayed for us and supported us right through from the beginning of the journey.  Then there was a time when the people who were added to my life were taking care of Matthew in some way – or – had their own version of Matthew.  Some had a glimpse, and some knew full well what we were going through.  What a blessing to have people in your life who really get it.  People who can cry with you, worry with you, rejoice with you, and make pee pee jokes with you without thinking you’re gross or immature! 

But due to various circumstances, we are again adding new people to our life and they are hearing “our story” for the first time.  Some hear our story, or at least a part of it, and are just in disbelief.  They say, “I can’t imagine how you do it.”  I can really understand how they feel, in part because I can’t even imagine it (which is why my usual response to that statement is, “I know!  I can’t either!”) And because they are hearing this story while Matthew is running around, playing and screaming as if there is absolutely nothing wrong with him.  But we’re not really the ones “doing it.”  To quote my good friend Karen, we are only the armor; it’s our son who is the warrior.   They can’t imagine how we go on having a full and “normal” (for us) life.  I have recently found myself explaining that we have to go on with life; otherwise what would be the point in living?  Why would Tom give up an organ if not to give the opportunity of a full life to our son?  Plus, life was a lot worse before the transplant.  A lot.  These people didn’t know us then; but even then we found some happiness.

Unfortunately, with some people who hear our story, I can almost physically feel their pity.  I can almost hear them thinking, “Thank God I don’t have their life!”  Which, okay, if hearing our story gives you perspective and makes you hug your healthy kid a little tighter, Great!  But just to set the record straight – so that there are no misunderstandings – It is a waste of your time to pity us.  Pray for us? Yes, please! But don’t bother feeling sorry for us. 

God loves and trusts us enough to have given us a miracle to care for.  It’s true that there is no guarantee of how long this miracle will be in our life.  I know far too many parents who didn’t get to keep their miracles here on Earth with them.  So every day that I am fortunate enough to feel my miracle squeeze my neck and say, “I got you!”…every day I get to live with my miracle, and not just his memory, is the best day of my life. 

I would not have chosen this life – especially not for Matthew.  Our days are not easy.  I often find myself praying for “smooth” and “normal.”  There are certainly things I would change if I could.  We have faced fear, pain, heartache and uncertainty.  We have also experienced joy, pride, relief and elation.  It is most likely that we will feel all of these things – good and bad – again.  But we are blessed with our crazy, hectic, complicated, stressful, messy, hilarious, miraculous, love-filled, “wonderful” life and we are happy.  Really.

P.S. I mourn and cry for the friends who have lost their children.  It’s an experience no parent should have to endure.  But don’t pity them either.  As sad as they are; as empty as they must feel; I know they also feel abundantly blessed for the time they got to share with their miracles, brief though it may have been.

Now-a-days, he doesn’t stop talking.  He sings his alphabet; identifies letters, numbers, and shapes.  A lot of the time, it would still be interpreted as his own secret language, but I always feel a sense of personal accomplishment when I figure out the word he is actually trying to say.  He helpfully facilitates my discovery by repeating the word ad nauseum until I repeat the correct word back to him.  Today for example, it was “computer.”  Luckily, his toy Winnie the Pooh laptop was right in front of him at the time.

His sister started at a new school this year and we take her to school every morning and wait with her and her classmates outside until it is time to say the Pledge of Allegiance and sing a patriotic song.  I love it, being out there with all the kids of her school.  They laugh and play and when its time, they line up; get quiet; and do exactly what they are expected to do.  Matthew falls out and acts like a fool.  He wants to run through the parking lot…he wants to lay down on the pavement…he wants to dig in the dirt.  And when I try to wrangle him in, he screams and yells, and makes himself spaghetti when I pick him up.  He throws his jacket/sunglasses/hat/insert whatever-he-can-remove-himself on the ground.  On Monday, they did a 9/11 tribute.  I had to take him away because as the principal was trying to explain this tragedy – that happened before most of the children she was speaking to were even alive – Matthew was screaming and wailing. 

Ai-yai-yai!  Which he happily repeats every time I say it…which is often…shocker…  Today as he was acting a fool yet again, one of Lala’s classmates asked me, “What’s wrong with him?”  I said, “Do you mean, why is he acting this way?  Because he is two, and he is a boy.”  Just the other day, I said that I love to be out somewhere and hear another kid screaming because I think, “That’s NOT my kid this time!” We usually just write it off saying, He is such a monkey!  But today, when I had to leave a conversation with a group of adults because I couldn’t contain him, it occurred to me for the first time:  People Might Think That He is Bad.  Could that really be?  People who just see us, who don’t “know” us.  People who don’t know his story.  They just see this cute, ornery kid, and probably think that 1) he is bad; naughty and 2) I can’t control my child.  What kind of mother am I? 

Having a boy is tough business.  Having a sick kid is tough business.  Having a 2 year old is tough business.  Trifecta?   Do I indulge him?  Certainly.  To his detriment?  I’m starting to wonder.  I am out of my league on so many levels.  Lala has always been a dream.  She rarely misbehaves and is easily corrected if she ever does get out of line.  I used to judge people who would write off their child’s poor behavior with a nonchalant, “Oh, he is just being a boy.”  But now I see.  I see so clearly.  I do my best to correct him, but he isn’t old enough to really get it yet.  He throws his fork/plate/mat on the floor and then cheerily says, “Oops!”  I take it all away, as I’m supposed to…but I still have to bolus him. 

Is he really bad?  I find myself saying “No” and “Naughty” far more than I ever wanted to or thought I would.  And then what does he do?  He looks at me with his amazingly cute face and big brown eyes and says, “I horry, Mama.”  And I melt.  Inwardly, I melt.  Outwardly, I try my best to stay strong.  I tell him that I forgive him and ask him not to do it again and he says, “Okay, Mama.”  So that every interaction, no matter how frustrating, ends with my heart full of love for him. 

I only know a handful of kids who deserved to be spoiled, at least a little.  But I am a very firm believer that it is my responsibility as a parent to raise my kids in a way that makes them accepted members of society. 

So if we have ever been at the store with you, or at school with you, or at church with you and he has acted like a monkey.  Well, feel blessed to know him, would you?  “This is age appropriate behavior,” I hear in the voice of my bestie (who happens to love him just slightly less than I do).  That will work for me for now… But then, maybe I’m just a sucker…

It is just as surreal today as it was as it happened, one year ago.  I kissed Matthew good-bye, high as a kite on Versed.  The anesthesiologist carried him in her arms back to the OR as she has always done for his other surgeries.  She loves him.  She calls him her boyfriend and she calls me “Mama” in her French accent.  She is the best pediatric anesthesiologist on staff (I believe in the state).  She is tough as nails and the entire hospital is afraid of her.  But she loves Matthew and I couldn’t have been more comforted had anyone else taken him from me for this surgery. 

Before the surgery, both of Matthew’s surgeons came in to talk to us.  Dr V, who has done all of Matthew’s surgeries, is a brilliant surgeon and a fine man.  We have developed a relationship and even tease each other.  His quiet confidence has always made me believe that everything will be okay.  I couldn’t imagine Matthew having surgery without Dr. V’s hand on the scalpel.  Dr S was the actual Transplant Surgeon.  It was his job to fix up Tom’s kidney and attach it to Matthew’s body in all the right places.  Then it would be Dr. V’s job to “hook up the plumbing.”  Matthew was the smallest child by half that Dr S had ever transplanted, but we trusted him.  In part because he exuded confidence; because he has an incredible reputation; and because on a previous meeting with him, his phone rang and his ring tone was a Led Zeppelin song.  On the morning of the surgery, he told us that, “we have a lot of people praying for us.”  He included himself and the surgical staff in that sentence.  It wasn’t just another surgery to him, but it was something that he was prayerful about, as we were.  That was all I needed.

With Tom it was a bit harder; if you can believe that.  Matthew was too young to really understand what was going on, but Tom made this commitment, this sacrifice, with eyes wide open.  He was very brave.  But it was sad.  His father passed away just 11 days earlier and all of the doctors, seeing him for the first time since his father’s death, were expressing their condolences.   I was sitting on his bed with him until they came to wheel him back.  When I stood up, knowing I was facing the next several hours with 2 of the 3 people I love most in the world in surgery at the same time, is when my back went out.

Many loving family members and friends stayed with me that day.  They took turns pacing with me, going to get food with or for me and holding vigil with me.  And at the end of that very long and stressful day, both my husband and son were out of surgery.  Stable.  And they both were making urine.  Surreal. 

Tom came out of surgery with a band-aid over his belly button.  He gave up an entire organ and the scar to show for it was covered by a band-aid.  The first several days were very hard on him physically.  It was hard for us emotionally as well as I was with Matthew about 90% of the time.  But now, a year later, Tom is just fine.  He would tell you that he feels no different from when he had two kidneys.

And what has a year with a working kidney done for Matthew?  Well, he has grown about 5 inches and gained 7 -8 lbs.  He had just started to walk before the surgery, now he runs and he dances and he stomps around.  He goes up and down stairs by himself.  He talks and he sings and he counts.  He can identify colors and numbers (even out of order).  He is a total parrot, repeating everything we say and he is just on the verge of actually expressing complete thoughts.   The other day he started singing a mash-up of Bohemian Rhapsody and Row Your Boat.  Needless to say, he is soo much fun.

Medically, he is stable.  I no longer have to take his blood pressure or temperature daily.  I try to weigh him and take his pressure every now and then just so it doesn’t freak him out at the doctor.  He is eating a variety of foods now – no more formula.  We are working on getting him to drink but it is a slow process, so we still rely on his gtube to make sure he gets all 54 oz of fluid he needs per day to keep his kidney happy. 

Throughout his life, we have held on to milestones like life lines.  If he can just come off the ventilator – he will be okay.  If we can just get him home from the hospital – he will be okay.  If we can just get him to transplant – he will be okay.  They told us a year ago that statistically, if we could avoid a rejection episode in the first year, the likelihood of a subsequent rejection goes down to the single digit percentile.  So we clung to that one; I clung to that one, for our lives.  I kept him in a bubble.  I was hyper-vigilant about hygiene.  And I felt that if we could just get to his 1 year Kidneyversary without rejection – he will be okay.  Well… We made it.  No rejection this year.  But I learned something very valuable along the way.  Life is going to come at us, every day.  Right now he is stable.  I pray that he will be stable for a long time to come.  I have been asking God to get us as close to “normal” and “boring” as He can.  We could use a little of both right about now.  But this is our life to live and that is exactly what we are going to do.  I hope that now that this big milestone has passed, that I will be able to relax a little bit more, live a little bit more, and always continue to cherish every single day we get to share as a 4 Family on this Earth together.

Happy 1^st Kidneyversary, my brave, inspiring, amazing, and happy boy.  I wish you many, many, many more.  And thank you Tom for giving our son the gift of life.  You truly are a hero.  I am blessed and privileged to be your wife.

This morning after she finished her breakfast, she was playing in the living room while I was giving Matthew rice milk via his g-tube.  She said, “Mommy, are you bolusing him?”  I said yes.  And I thought: Oh the life we live that my 6-year-old knows what “bolusing” is.  Then she went on to talk about how he would have to learn to drink eventually because he’ll have to drink as a grown up.  Then she said, “Because what if you and Daddy die?  He won’t have anyone to bolus him…and I might be married by then.”   I assured her that she would want to help her brother even as a grown up if he needed her and that if he is old enough to bolus himself – he had better be drinking!  Then I said, “I don’t think you should worry so much about that.”

She said, “Maybe you shouldn’t either.” 

She has an old and wise soul.  Maybe I should listen to her…

I didn’t realize until after we were out that Quincy wasn’t with us, so the boy had to make it through a whole doctor’s appointment without Quincy or a paci.  Not an appointment where he got stuck, but the pediatrician’s office which is its own kind of scary because he doesn’t go there that often.  We got home in time for lunch and nap, but no Quincy to be found.  I searched my house for Quincy for 45 minutes.  My steely heart was breaking because all I could think about was the possibility that Quincy could really be gone, dropped in a parking lot or something, and the boy would have to learn to live without him.  In the midst of the search and my thoughts, I was on the phone with my mom.  As I lament, “What will I do if I can’t find Quincy?” She says, “Now he has already fallen asleep without him, hasn’t he?”  Well, yes.  Because he is so brave.  She said, “Because he did what he had to do.” 

I can be so strong when holding him down for tests and blood draws, but as I sit on my bed, on a break from my search, I cry because the boy shouldn’t have to get through losing Quincy.  Hasn’t he been through enough?  He is already braver than most grown men.  Hasn’t he already given up enough?  Sacrificed enough?  So many things that he doesn’t even know or understand yet, just to have the privilege of life that most people take for granted?

Then my mom says, “Because God’s not going to give him what he can’t handle.” 

Wait – stop – call Oprah!  If this isn’t an Aha Moment, I don’t know what is.  *God isn’t going to give the boy anything that he can’t handle.* Do you have any idea how often I have comforted myself and my friends with that statement?  But I have always looked at it as what God is giving ME, as if God wouldn’t let that test result come back bad because He knows that would just push ME over the edge.  I always say, “God must think more of me than I do of myself if He thinks I can handle this.”  How vain…  Because today I realized that it really is about what God is giving The Boy.  It’s the boy’s journey and I’m just along for the ride.  And now I’m really scared because I know that the boy is braver, far more courageous than me.  I know God thinks the boy is special and is destined for greatness.  Look at all of the prayer that he has already inspired in people near and far.  There are so many people who love him dearly who have never even met him.  You may even be one of them.  God thinks highly of my son, of that I am certain.   There is a reason we picked a name that means, “Gift from God.” So now I must be comforted in my inspiration.  If my son can endure it, surely I can help to see him through it. 

But at least for today, losing Quincy was more than God wanted the boy to have to handle.  After sweat and tears and 45 minutes, Quincy showed up under my bed and is now right where he belongs…on the pillow of his brave friend waiting for the joy that finding him will bring.

The devil is often in the details, like when I say that he is now eating, some people think, “Okay, check that one off the list.”  But it’s a daily struggle of portions, pocketing, and variety all while navigating his multiple allergies.  Also people may assume that “eating” includes drinking, but it doesn’t.  Although it is beyond awesome that he is eating most of his calories, he still won’t drink the 1.3 liters of required daily fluids.  Yes, that is about 44 ounces of fluid a day.  I don’t even drink that much.

But I’ve noticed a lot of positive details lately that, to me, are worth sharing.  They are the kind of details that you don’t notice when your kids are healthy and meeting their milestones on time.  Well, maybe some do, but I don’t know that I remember them with Lala.  With the boy, these little details are like shining stars lighting my night.  They show me that he is growing and developing and getting closer and closer to “normal.” So here are some recent details about the boy:

• When we walk outside, he will hold my hand…sometimes…  For a while, he would toddle off and full on tantrum if I tried to take his hand.  That made it really hard to let him walk around.  I considered (and still do) getting him one of those kid leashes that I always judged other people for having.
• He is also holding the railing and walking up and down steps.  Inside & outside.  This is a big one because this was one of the things that he got marked down on when they were assessing his development.  The PT couldn’t quite appreciate why I wasn’t encouraging this activity right after transplant…
• There is a short walkway and about 6 steps leading to our front door.  I can now set him down on the walk and tell him to go home and he can take himself all the way up and wait for me at the door.  This is huge as I no longer have to carry his 25 lb little body and don’t have to make repeat trips to the car to collect all of our “stuff.”  It’s such a big boy thing to do!  And when leaving the house, I can say “stop at the curb.” And he actually does!  And stands there and cheers and claps for himself.
• He helps get himself dressed and can follow more detailed directions.
• He is no longer addicted to Yo Gabba Gabba; thank God!
• He and Lala play a counting game where they take turns saying the numbers from 1 to 14.  He can actually count up to 14!!  And count backwards from 5 thanks to Little Einsteins.
• And now gives big “mmm-mwah” kisses.  This is a huge deal because he had such a strong oral aversion that he wouldn’t let us even kiss his cheeks.

But here are my two favorite.  I struggle to order them because I’m not sure which one I’m more tickled about.

• He has started to drink from a juice box!!!  His personal best to date is 5 ounces – and that was even all at one time.  Only a very few people that I know truly understand how monumental this is.  It helps me believe that there really is an end to the use of his gtube.   Some days he wants nothing to do with the juice box or the water that he likes to sip from a cup.  But it’s much, much needed progress.

And I’ll leave you with this one because it’s the most fun.  But as a little background, in case you don’t know my daughter, she is a Diva.  She has been able to sing Bohemian Rhapsody pretty much from start to finish since she was 3.  Her other favorites include U2, Dave Matthews Band, and Adele.  So imagine how pleased we both were while riding in the car when we both realized that the boy was singing along to the Zac Brown Band.

But what’s the use in wishing?  I could wish the perfect life for you with my every hope and dream.  I could wish it every night, star light, star bright.  But it wouldn’t bring him back.

So instead of wishing that you had the perfect life, free from pain no parent should know, I will tell the world how blessed I feel to know you.  How blessed I feel to be touched by your brave son – who has left his mark on my heart forever.  I will say that I think of him more often than you probably imagine and that I’m certain I am not the only one.

I will thank you for the example of strength and grace that you set.  I will tell you how much I admire your courage.  I will remember that if you can make it through this, then we can make it through whatever God gives us.  And I will encourage you to remember these words when you feel like you can’t open your eyes, get out of bed, or even take another breath.

When talking about our life with the boy, so often I hear the comment, “I can’t imagine.”  Well, I can’t imagine not knowing you and I am so very glad that I do.