The Christmas Present

I've been stewing over gifts for the past couple of days. I've been done with the family shopping since October, but now is the time for teachers, para-pros and therapists to be added to the list. What makes a "good" gift? Something useful or creative? Something homemade or store bought? Something costing nothing but time and love or something with a high price tag?

I've come to the conclusion it's not about the gift...it's about the present. The present meaning the here and now. Don't take it for granted. No one thinks that in the midst of the light cast by the Christmas tree and the platters of food on the table, that next year could be different. Unfortunately for a lot of my friends, this Christmas will be different...their child will not be listening for Santa's bells on his sleigh, they will not be setting out cookies and milk, their eyes will not light up in wonder on Christmas morning. They will instead be celebrating with Christ Himself in Heaven. No, don't take the present for granted.

Christmas is about a child, one small child born in a manger. Christmas is about children and family and togetherness. Nothing else matters. The rest is just "stuff". I don't reminisce about which stocking hung where, the way the lights were strung on the tree or the wreath hanging on the front door. I remember making cookies and decorating with sprinkles with my mom. I remember riding around the neighborhood with my family each Saturday night to pick out the prettiest decked out house. I remember watching movies on Christmas Eve with my grandmother playing with my hair while I sat next to grandaddy. I remember the PEOPLE and the memories I had with them. Not the THINGS surrounding us.

I am now making memories with my children...the two little people (and all of the wonderful families I have met because of them) that have taught me not to take things for granted. That we are not promised tomorrow. That right now is all we have and we have to make the most of it. Please don't get lost in the glitter and glam of Christmas. Don't put off next year, what can be done this year. Dusting the coffee table can wait, dusting the lawn with reindeer food with your kids - can't. Make memories and make the most of what you have. The gift of the present. And when you get overwhelmed, don't turn to the beauty of your Christmas tree, turn to the beauty of the Child that we celebrate. There you will find peace.

Merry Christmas!

happy people

From the moment you wake up until the moment you fall back asleep, you are constantly making decisions. Some require more thought than others like buying a house or car and others not so much like what to cook for dinner. One choice can affect another. The choice to hit the snooze button three times can now take away your choice of stopping for a cup of coffee on your way to work. And when a choice is taken away, you have yet another choice of how to react to it. You can react positively or negatively.

Someone that chose to wake up happy that morning would say that at least they have a couple of extra bucks in their wallet and can splurge on an appetizer for lunch now. Those that chose to wake up unhappy, just grumble and complain and whine about anything and everything for the remainder of the day.

What a minute...back up...you say someone CHOSE to wake up unhappy?? Why yes, yes I did. It is a choice! You choose how you feel that day. Granted, bad days happen and no one that I have ever met is happy one hundred percent of the time. I don't often run into people that are laughing when they put their old, sick pet down at the vet! But you still can be happy that day, even while you are sad.

HOW?!? Happiness should not be defined as pleasure. You can find pleasure in eating a huge chocolate sundae, but not happy about what it is doing to your body. I believe happiness is joy and gratitude. You can find it anywhere - reading one of your favorite childhood stories to your child. Holding a 3 week old puppy. Watching your parents re-new their wedding vows.

Happiness is quite simple actually. It's a simple emotion. It is something everyone is striving for, but no one is happy once they reach it. They always want more. Never realizing what they have at that moment. Yes, I want more trips to Disney World. I want to win the free groceries for a year contest. I want the housekeeper to come daily so I can spend my time playing with my sons. But I'm happy with what I have...and even what I don't have.

I don't have a lot of money, so I appreciate that the good things in life are free. I don't have a lot of time, so I cherish the moments. I do have problems that arise, and I'm thankful my brain (mostly) works with me to help me solve it. I do have a messy house, and I'm grateful that my children have the ability to walk and play and make that mess.

I simply wish to spread happiness to those that don't realize they have had it all along. Luckily for us, happiness spreads as easily as a cold virus. Catch it, spread it. Be grateful, be joyful, be happy!

Where did mommy go?

Psst - it's me - I'm hiding...in the bathroom. Don't roll your eyes at me, if you are a stay at home mom, I will bet my life savings (which is NOT much actually) that you have a hiding place too!
Every SAHM craves conversation with someone. And boy howdy do we get it! What's that? Where's that go? Why did you do that? What are you doing now? Can I do it? Look at this. Watch me. Mommy, mommy, mommy, mommy, mommy, mommy. And my "favorite" oops! And then when we get the chance to talk to an adult (our endearing honey bunny), we don't even have the energy! Working parent - how did your day go sweetheart? Home bound parent - lifts head up off the kitchen table and grunts, places head back down.
To insure more energy and a better balanced mood when my hubby arrives, I take "mini-breaks" in the bathroom. Mommies all over the world "potty" a lot. I "potty" to have a minute to myself when I have cranky kids - reminding myself that I do LOVE them even when I don't LIKE them at that moment in time. I "potty" when there is only one cookie left, I am PMSing and really don't feel like sharing! I figured I shared food with you for 9 months - this cookie is mine kid! I "potty" to make important phone calls. Our transplant coordinator always wonders why I echo on the phone.... ;)

I always thought my mother's bladder was the size of a peanut when I was little. Now I get it - now I GET IT! Back in 2 minutes :)

millions

If I had a million dollars - oh the things that I would do! I would just completely replace the a/c unit instead of buying a $1400 coil! I would donate to our Children's hospital. It would in no way, shape or form compensate the time and attention they have given us...but it would be a nice start. I would help my fellow kidney mommies that are getting short changed by the government, because why help the kids that can't live without medicines and surgeries in favor of helping able bodied lazy people?
I would pay for a trip to Disney for all of us too - a week of magic for our miracles. I would set up support and non-profit groups to help those facing a high risk pregnancy, families separated and/or out of work due to NICU stays, those working several jobs just to make ends meet for medicine co-pays, and a group solely to take care of the caretakers.
After living with a sick child and seeing other families dealing with this too, money seems so different now. Yes, I want more...we need more. Especially in 15 short months when medicare runs out - that's gonna hurt! But if I came into some money, I just could NOT spend it on us. I have a family out there that needs help too. Most of us want what money can't buy - health, normalcy, peace of mind. Fancy cars do not speed up your wait on a transplant list. Huge homes can not shelter your heart and mind from what may be lurking around the corner. Stylish clothes may cover up physical scars, but not emotional ones. A million dollars means nothing when you've lost your dream, your life, your soul, your child.
If I had a million dollars, I would buy back time. Time for my friends to have with their children: Aidan, Matthew, Vayden, Conner, Emelyn, Adam, Nels and SO many others...it's just unreal. I would give each of them just one more day. I know it would never be enough. You can't put a time limit on how long you could and should love your children. You can't put a price on it either.
Here's a poem I found that I think sums up a mother's love for her children near and far.The Cord
We are connected,My child and I,by an invisible cord. Not seen by the eye.
It's not like the cord that connects us 'til birth. This cord can't been seen by any on Earth.This cord does it's work right from the start.It binds us together attached to my heart.I know that it's there though no one can see the invisible cord from my child to me. The strength of this cord is hard to describe.It can't be destroyed. It can't be denied. It's stronger than any cord man could create. It withstands the test can hold any weight. And though you are gone, though you're not here with me, the cord is still there, but no one can see. It pulls at my heart. I am bruised...I am sore, but this cord is my lifeline as never before. I am thankful that God connects us this way. A mother and child death can't take it away!

I remember them! I talk about them. I love them. I miss them too. Here's a million wishes that no matter how long it has been, you always feel them near you. And a special shout out to sweet Aidan as he approaches his angel-versary. He outgrew his tired and sick little body to grow great beautiful wings.

twenty four

24 - the number of times my son has been wheeled into the OR.
4-6 - the number of hours I will wait for this particularly surgery to be finished.
2 - the number of nights we "should" be staying
4 - the number of nights I packed to stay ;)
3:00 - when we turn his feed pump (filled with pedialyte) off tonight
7:15 - when they will begin to give my son his chance of "normal"

Does this get easier? Yes, it actually does.
Does this get hardier? Yes, it actually does.

I know how to calm my son down; I know what to expect from him and from the hospital staff. I know I have a say in the care and treatment of my son. I know I have the prayers and thoughts of my friends and family. They lift me up, inspiring me to go a little more past exhaustion and despair - to get to the other side where I find joy and peace.
I also know Matthew's anxiety will be terrible. I know he will shriek, throw things, try to hurt himself and continually ask "why" and telling me "no". I know he will be in pain, physically and mentally. I know he will not sleep because he will be frightened, and I know tomorrow night will be a long night of no sleep for me either. That's ok - that's what mommy's are for after all.
Knowing what is to be expected, does not mean I know everything that will happen. Complications, set backs, infections or any other number of issues that arise. Of those, I'm terrified. I don't know why I haven't been frightened by them before...I guess everything was so cut and dry, black and white back then. None of his surgeries have been "elective". Though this one is not "elective" either - it is to keep his kidney is better shape long term without the reflux and high pressure damaging it - it just seems more discretionary...like we have more a choice to do this one or not.
And because of that, I'm having a hard time with the risks. Before, if something went wrong (and it often did) it was always better than the alternative of not having the surgery done...which ultimately would have led to death. Now, it leads to a slow progression of kidney failure. But honestly...isn't that what everyone with a kidney transplant is experiencing? You just wait til your labs are bad enough to say you need to start making calls again and they stick you on a list? I don't know. I'm not scared for him per se... I think I'm actually scared for me!
I've never been scared for me! I'm always the nut case running up and down the halls laughing that we are "one more surgery closer to transplant". During transplant, the days leading up to it and the day of, NO butterflies! Just pure gratitude and peace! Now - I'm a bundle of nerves! Go figure! It only took 24 to get me there!

I wanted to include a song that some of my "kidney moms" lean on and rely on (since 90% of our kidney babies are boys) I just wanted to share it with you and ask for your prayers for a smooth surgery, a complication free recovery and a very short hospital stay. Please pray for Matthew's mind and soul - those are the scars that don't show, but run deepest and worry me the most. Thank you.
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related

It's FINAL

My heart is heavy tonight. There is a couple in a group I belong to that have made the decision to terminate their son that has a bladder obstruction, much like Matthew and many of Matthew's friends did. The doctors recommended termination since they believe the baby to already be in kidney failure. They have agreed.
It is not my place to judge them or their circumstances, but I can't help but feel for that poor boy that will not be given a chance. They insist he will not make it alive or will face many painful interventions. He might, but you don't know...you're not letting him see how much of a fighter he is. They say at 17 weeks (the age he is now, though the abortion hasn't been scheduled yet) that the baby won't feel pain until he is 21 weeks. I disagree. Matthew felt pain. He felt the needles for the bladder taps and the needles to put him to sleep for the surgeries. Those started at 17 weeks. He was cowering from the needles the following week when the tip touched him. He would curl up on himself and recoil to the opposite side of my uterus. He knew it would hurt him. It made me sad, but it was a necessary evil if I wanted to hold him while his heart beat.
I often asked myself if I was being selfish - for making him go through so much before he was even born only to be thrust into a world of surgeries and procedures when he did finally arrive. So I gave my son to God. I was allowed 15 minutes of "on feet" time during my pregnancy between fetal surgeries and I would spend those in the shower. I would sing hymns and cry. I couldn't do it in front of my then two year old son, William. It confused him and made him scared, so I reserved it for MY time. I would tell God to take him if He needed him. But if I was able to keep him, even for a short time - I would make it known to all what a miracle he was and to NEVER give up hope. God can create mountains and the moon - He can heal a baby, regardless of what a doctor...a mere man says. I told God I was going to try everything I could to keep him alive, if He would let me know when it was time to let go.
I never let go. I'm still holding on. I'm holding on for dear life, my life...as my children ARE my life. But I know God and I still have our agreement. When it is time, and if that time comes before my time, God will heal him and take care of him for me until I can get there. I would trust in God and His word to me. Not the doctors. I would not terminate nor would I stop treatments or surgeries that could save my son. That was my final decision. To leave things open to the ultimate Healer. To not make things so final.

It's not Dumbo

Alright, we know how to help out the elephant's caretaker, but what about the one riding the elephant night and day. Wait, let me re-phrase that...what about the one tugging this 8 ton weight on his/her shoulders? The one that has to deal with the symptoms, surgeries, procedures and numerous hospital stays. How do we help them carry their burden?

I'm going to tell you something that you may find odd - do not treat them different! Have you ever reacted badly, or worse...not reacted at all to someone walking in a building with a elephant on their back? Have you ever turned your head away from a child in a wheel chair? Are you guilty of rolling your eyes when your dinner is "ruined" by someone suffering from Autism or Tourette's syndrome as they scream and shout due to some trigger that set them off? Have you ever whispered behind your hand to another person as you watch someone receive a treatment of some sort that might be shocking to you, as you have never witnessed it before? Come on, admit it. I can guarantee that everyone has done at least ONE of those things at some point in their life, whether they were 5 or 50. I know I have. :(
Don't be scared to make eye contact, smile and say hi to someone with an elephant. Yes, carrying an elephant around can form thick skin and calluses, but their hearts are still very tender. They know something is different about them, their lives. But they still need friends, love and a gentle touch. Can it be overwhelming - absolutely! Matthew had many visitors in the NICU when he was born - both family and friends. I remember the reaction of each person when they met him for the first time...95% of them cried. It is intimidating seeing a baby just shy of 4 pounds hooked up to so much stuff, but I can tell him how loved he was that so many people went out of their way to see him.
It's alright to be curious; it's ok to ask questions. Please do! If the elephant handler is too young to answer - ask the zoo keeper! Even if you do not know them! Trust me, it's OK. Yesterday, Matthew did NOT want to nap (stinking three year old transition time) so off when went to a nearby playground. There was a little boy there already when we showed up. William and the boy took off fighting invisible zombies (I think they watch too much Scooby Doo!) Since we were out in the middle of the afternoon, I had to bring Matthew's supplies for water boluses. As I was taking out the syringe and placing it in Matthew's g-tube extension, the little boy walks over. "what are you doing to him?!?" (The look of astonishment on his face was priceless by the way) ;) I told him that this was the way Matthew took in food and drink. He asked more question, and I answered them. His mom had come over as well and we talked too. When I gave Matthew a small cup with water in it to try and get him to take a sip (and he did - YAY), the little boy clapped louder than any of us on Matthew's victory. Such a small thing, with so much meaning. It meant he was pulling for my little elephant handler and celebrating his accomplishments. Naturally us moms traded phone numbers and will meet back up soon.
An elephant handler does not need a free cruise or to meet the popular NFL star of the year, they just need to be accepted. In the littlest of ways - a smile, a playdate or a hug. No need to go above the call of duty. No need to change your life around or do anything out of the ordinary. Just say Hi when you come across one. You'll see their back straighten and their shoulders lift. That elephant won't be so heavy for the remainder of the day. And that means a lot.

Let out the elephants

I'm a very lucky girl! God didn't give me a sister through my bloodline family, but boy did He go over and above in my friends. They've held me up when I was exhausted both mentally and physically; held me back when I knew I would regret something; and held me down when I was when I wanted to do nothing more than just go off on everyone. My sisters really came though once Matthew arrived.
Audrey never lets a lab, procedure, surgery or sickness go unnoticed, always calling to ask what's up. Robin visits me in the hospital and even brings over her yummier than mine cooking! Janet never lets William feel unloved since most attention goes to Matthew - she plays one on one with him. And Suzie Q offered to be tested for my sweet boy, but she took the harder road and kept Downey girl for us while we were inpatient.;) My friends and fellow sisters that are not local - lifted us up in prayer and checked in on us often. My Wilmington mommy group sent flowers after we received the poor prognosis during pregnancy. :) Like I said, I'm a very lucky girl!

A life threatening disease in a child can be likened to an elephant in the room. It's unusual to find an elephant in the family living room. You have not been trained to take care of said elephant and who wants to get stomped by those huge feet?!? Better to just ignore it - it will go away or blend in or something...eventually...right? No, it won't. And the sad part is that when you ignore the elephant, you ignore the child, the family, and the disease. That's not helping anyone.

I understand no one wants to bring up bad news, no one wants to see their friend cry and no one wants to hear how awful a child is doing - but really you need to put your big boy/girl underwear on and ask. The best thing you can do for a parent of a sick child is ask. And I'm not talking about ear infections and the flu here (though it's still nice to ask so they know you care). I'm talking the BIG elephants - lupus, Tay-Sachs, and one near and dear to my heart, kidney disease. The incurable diseases that we can only hope for a cure and pray it doesn't take our child before we reach it.

Another thing to note when dealing with parents of sick children, do not compare situations and do not say "I know how you feel". That saying, meant to bring about a common bond, just separates you further actually...sometimes bringing up feelings of resent. (no matter how hard the parent of the sick child does not wish it!) If a child had an allergy induced asthma attack - that's scary! It is not any way, shape or form equivalent to a child needing a tracheostomy. Do not say you know how that parent feels, unless your son or daughter has a tracheostomy as well. I rarely say I know how a parent feels in my own little kidney group, because each of our cases are different! I do not know what it is like to loose a child. I do know what is like to be told my child is going to die. I do know what it is like to see him stop breathing, hear a flatline alarm on the monitor when his heart stopped beating, and to be told to that I might need to have a priest or member of the clergy nearby for a surgery. But those can not compare with loosing a son or daughter - no matter the age 2 weeks or 40 years old! The pain doesn't lessen as your child grows. To do so is to come into their room holding a flamingo. Well, it's not as big as an elephant, but it's more brightly colored therefore easier to see and talk about. No, put the flamingo in the backyard, give it some water and go hug your friend.

Another tip, try not to make "light" of the situation. I personally do not mind this one as much...as I'm usually that person that tries to make someone laugh - and inevitably ends up looking a bit stupid. But some people do take offense, or take things personally. Do not make comments about how you wish your child had a gtube so you wouldn't have to chase her with a spoon when she was on antibiotics. Do not say how lucky someone was to have not had to endure the last month...or two...or three of pregnancy and get really uncomfortable when their 28 week preemie is clinging to life. It would be great if you brought over a romantic comedy or funny book. Cut out cute Garfield cartoons or forward a funny email. Just remember who you are talking to when you are talking to them. Dressing the elephant in clown shoes and a tu-tu does not mean the elephant won't step all over our children and our hearts.

The biggest no-no's to say to a parent with a sick child are often the ones that meant out of sincerity, making them hurt more - knowing they were meant to soothe. Knock these off your lists to say to anyone going through any type of disease/illness in the family - "This to shall pass", "I don't think I could ever do what you do", and "I pray you get a healthy child next time/ at least you have a healthy child too". See - these do not sound BAD! And they mean really GOOD things from people. But to a parent with a sick child, it hits below the belt actually. We know this will pass, but you know what...we are not sure we want it to immediately. Because right now, at this moment, we have our child. S/he may be sick and their life may be holding on by a single thread - but we wouldn't trade one minute away from them for all of the world. I don't know how many times I have heard my friends say how they would LOVE to hook their child up to dialysis one more time, to clean up vomit or to hold him down for labs - because they are not here any more. And yes, you could do what I do - every parent can and does when it happens to them. Do you want to? Hell no! Do I want to? HELL NO! But I do - I do it for my son. I will let you in on a secret...just because I smile when I talk to you about elephants does not make me strong, it just means I care about you and don't want to make you uncomfortable. I can't let my guard down - I have to hold it together for other people...namely my sons.

I've noticed the saying "as long as it's healthy, we don't care what the gender is" both before and after Matthew. I get it - who would wish a chronic disease on an infant? I'm not a zookeeper myself! Taking a vertebrate zoology class in college did NOT prepare me for elephants in my house! I wanted a healthy child too. But I did not get one. I got an unhealthy child, with a life threatening disease of which there is no cure (no - transplant is not a cure - it's a treatment). And you know what? I. Would. Not. Trade. Him. For. Anything! Has life been harder for our family - absolutely! Have you ever tried to pack an elephant in the car for vacation - does NOT fit into a normal family sedan! But life has been more rewarding. We have our own little private circus show just for us. And having another child that is healthy already - we know what a blessing that is. But having our sick child -s/he is just as much a blessing to our family...and would be to yours too.

If you know someone in your life that is attempting to tame and train an elephant, just be there for them. You do not have to jump through hoops, bring over gifts or light up a building in their favorite shape. You just have to be there for them. Ask them how their child is doing. Ask them how they are doing. Let them talk, share, cry and laugh with you. The hardest time to parent a sick child...is when they are doing their best actually. The best of times can become the worst of times as your mind has a minute to think and process. How long do elephants live? What is the cost of elephant upkeep? Will the elephant remain tame or will its wild roots flare up suddenly? The quiet times are unsettling to say the least. But with friends and family around - anyone can get through it. Both new and veteran zookeepers.

Three years

This time three years ago, I was in route from Cartersville Medical Center to Northside Hospital in Atlanta via ambulance. My youngest son, Matthew, was born today. Born into sickness and pain and uncertainty. I look back at my first born son's birthday and think of that day with such fond memories, immediately thrown back into the warm fuzzies and feelings of awe and wonder as we became parents for the first time. No one can describe that feeling until you feel it - seeing your first child born - wow!
Once I found out I was pregnant with our second child, I was over the moon. I couldn't wait to decorate the nursery, look through baby names and see how William reacted to my growing belly. Well, we didn't get the nursery painted and ready until Matthew was already 6 weeks old. I looked up names with special meanings that would "look good" on a grave marker. I had to get help from the doctors to have a "baby bump" showing in my belly. This pregnancy that I was excited so excited about did NOT turn out how I had expected. Being told terminate your pregnancy by three different doctors and even told by "well-meaning" family and friends that "maybe it just wasn't meant to be - don't intervene too much, God will heal him in heaven", it just strengthened my resolve to get Matthew here alive.
Then he arrived. I didn't feel the joy and peace I had felt with William. I feel sad to admit that. :( I felt relief I got him here alive. I felt grateful he was in good hands with the hospital staff. And I felt scared about the medical procedures, tests and surgeries he was facing his first few days of life - nearly 2 months before he was even supposed to arrive.
I met Matthew via a polaroid picture. The doctors telling me all his lab, ultrasound and intervention results. I had no clue what they were saying - it was a different language to me at the time. His lungs were small, his bladder was huge, and his kidney didn't function even a small percentage. I cried; I cried until I met him face to face the following day when he was on his way to a more intensive care NICU that could handle his needs. I saw him and all the torment that was bottled up inside started to dissipate.
He was here. He had made it. And I would make sure I gave him his re-birthday. A day to be born again into health. I would make sure I fixed whatever I had messed up when I was making him in my body. I know I'm told often it wasn't me...but I still can't shake that. I still feel tremendous amounts of guilt of what he has endured because my body failed me, failed him. But now he has his re-birthday; his new kidney; his new life. And we are able to celebrate three years with our son. Three years that started off with so much anxiety and now filled with so much happiness.
Happy birthday to my Matthew. My heart and soul. My miracle. My precious, strong fighter.

Courage

"Often the real test of courage is not to die, but to live" - Conte Vittorio Alfieri. I see this courage everyday in Matthew. He has so much to be afraid of and anxious about, but he does his best and puts on a brave face when all is said and done. Even this afternoon, after being strapped down, so upset he threw up and covered in a sheen of sweat due to his screaming and thrashing about, when it was over he smiled, waved and said "thank you for the owie". My brave little boy.
I wish I was as strong as him, as brave.
I've been told that while it takes courage to achieve greatness, that it takes more courage to find fulfillment in being ordinary. Though I have no doubts that Matthew is extraordinary, I'd be thrilled for him to accomplish "ordinary" things. Matthew had a procedure today to find out how close we are to "ordinary"...we're not that close unfortunately. We still have a long way to go it seems. But (and without any intention of being a Miley Cyrus wanna-be) it's more rewarding to take the scenic route to your outcome than the direct approach.
We've take the scenic route SO many times before...actually...EVERY time before now that I think about it! Every time we had a surgery with one goal or outcome in mind, another one was thrown in our way that came out of left field. Everything "easy" was complicated, but because of that...it got easier. Does that make any sense? That even though it was hard, it was better to go through it that way; either to teach us a lesson in patience, compassion or that it really does all work out for the best in the end. I wonder what lesson we will learn out of this little detour?
I'll tell you what I know now: that it is ok to be angry at the way things are, as long as you have the courage to look ahead - knowing that they will not always be that way. We're holding on to hope and courage here; I'm lucky to have such a great teacher such as Matthew to guide me.

Happy in the now

There is a poem floating around facebook right now (partly because I shared it on there too!)that talks about all the "lasts" our child(ren) go through. It brought a tear to my eyes when I read it. But upon thinking about it later...I wondered why?
I look back over the years of my two children, the good and the bad. I will miss certain things - the newborn baby leg draw up, the baby sighs of contentment, and "milk coma". But I look forward to so much more! How can I be sad, when so many great things are there to look forward to? I don't understand that part I guess. Why mourn the past when the future holds so much promise? Just because there are a lot of "lasts" that have been seen, there are even more "firsts" to be experienced!

I will not cry about past joys - why cry now over something that made you so happy just the year before? I will smile as I drop my son off for his first day of kindergarten. I will beam when he walks across the stage to receive his high school diploma. I will glow when dancing the mother/son dance at his wedding. And I will be giddy holding my first grandchild in my arms. If the unthinkable happens, I will be blessed with the knowledge that one day we will meet again, whole and healthy in Heaven.

No tears! No need! I am happy in the now and excited in what is to come. :) I can't wait!

The kidney family

It's been a long time since I have written. I had decided to live and celebrate life rather than writing about it. And we have - we have enjoyed every moment. You have to in this family, our kidney family. You never know what will become of the next infection, complication or medical mishap. Today is a sad day in our kidney family. We have lost yet another fighter, just 10 days shy of his 1st birthday.

A few family and friends often ask me why I let myself get attached to people I may have not even met. How I can form such an affection for a child I've never talked to, parents that only meet regularly in an online renal warrior group to share, vent, cry and offer praise. They are MY people. They are ME. Our stories are different, but our outcomes are hopefully the same - a successful kidney transplant and a somewhat normal life with our children. We know exactly what each other feels - we've been in their shoes and can offer hope and help in times of trial and despair, or share smiles and gratitude in times of happiness and health. And then their are the days like today, that only a few of us know what it feels like...but we all feel it in our own way.

We have all had to fight for our child(ren)'s right to live - sometimes to even take their first breath. Our children are fighters, born fighting and pass away fighting. When one of our kids is in the hospital, you can bet we are all storming Heaven - whether it is for something as "easy" as a routine biopsy or something as scary as sepsis. We are family, you don't turn your back on family...especially if they need you. And we all need each other, in different ways. For reality checks of how good we have it, for hope in the future, for a sigh of relief of what we've gotten through and for support during the unthinkable.

I can say stuff to them, that I can't to others. I don't have to worry about offending or insulting them - they know exactly what I mean in the heat of the moment...in times of stress, fear and exhaustion, because they have had those same feelings too. The loss of a love one is always heartbreaking, add on the loss of a child and it's mind boggling. Knowing what these special children have endured throughout their lives already...it's numbing.

And everyone of these special, strong parents that have dealt with this numbing, horrifying nightmare, would do it all over again. I would do it all over again. To have known these little miracles, even for so short a time, it is truly life changing. They do not complain, nor ask "why me mommy" - they just live in the moment, as we all should. Because the moment is all we are guaranteed.

Rest in peace little Conner - your Father awaits you and welcomes you Home. You have many friends to play with, give them our love from their kidney families.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14

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 :)