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 :)

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!

Labor of love

Mom-nesia = the blessed occurrence that has to happen before we are willing to go through the trials of pregnancy and labor all over again. Had it not, there would be many more single child households out there!
May I see a show of hands of how many women upon receiving stitches to their hoo-ha said I immediately want to do that again. Mmmm-kay. Now raise your hand if you were one of the c-section mommies that upon your first sneeze after your pain meds wore off, you were game to go again in 9 months. I see you flinching from the recollection of that feeling... ;) I've been through both and neither time did I raise my hand! Honestly, I kept my hands bound and taped to my sides until my rugrats slept through the night! :P
But yes, eventually my memory of pain, vomiting and stitches (both times) were chipped away and replaced with warm fuzzies. I look back now and think - that wasn't so bad. Just like the pregnant lady that has to endure 6 months of torturous morning sickness only to say that she now misses being pregnant. (that was not me by the way - I'm one of the weird ones that loved my growing belly...and growing bust line too)
Turns out that happens in other ways of life too.
Today marks 10 months of kidney function for my son. Ten months since his transplant from Marie. Ten months since everything we knew and were familiar with flew out the window! And now, it is starting to get a little hazy.
Don't get me wrong - I could still set up PD, I know the process for getting him on hemo and I still cringe thinking of dressing changes on Mondays. But the rawness is leaving. The hole in my heart is mending. The feeling of being overwhelmed isn't with me every day anymore. And if need be (though with God's grace it won't come to that) I could do this again. Talking about Matthew only there. ;)
We've done it before and we've survived it. We were all made better people because of it. And if an 8 month old can endure being strapped into a crib for three hours - then surely an 8 year old can...well...with the help of the Gamecube or PlayStation. Not that I have to worry about that at all since I just know this kidney has a 20 year life span with the way it's kept going through the hard knocks! :)
I'm so proud of my little fighter and everything he has gone through. With the best of smiles on his face :) Happy 10 months lovebug!

what a treat

Halloween - the day everything started happening last year. The day I noticed dangerous signs in my son.
We had gone over to my in-laws house to trick or treat with Woody the cowboy and a frog. The night ended with my husband and I taking turns listening to our son sleep in the night and making sure he was still breathing. The day before, Matthew had been to Egleston for dialysis. We were supposed to trick or treat there on the transplant floor. He came in costume and we got lots of oohs and ahhs. :)I took a picture with my phone of my little frog. That was the only picture we got of him in costume. He never got to go trick or treating on the transplant floor after his hemo session. He didn't get to go the following night on Halloween either.
An hour into dialysis, Matthew's catheter began to "suck" - meaning air was being pulled instead of blood. When that happens your blood clots. A clot during dialysis can be deadly. They flushed huge amounts of saline into his lines to keep the flow going...but it still clotted off.
Our dialysis session lasted 6 hours - but in that time we only had one hour of dialysis. Matthew was severely overloaded with fluid and was having problems breathing on Halloween night. They scheduled a permacath replacement for Monday morning. Twenty four hours after the new dialysis catheter was placed we were told our son had congestive heart failure. The fluid in his lungs was causing the breathing issues. We stayed at the hospital for 10 days - having a 4 hour dialysis run every one of those days except one off day and we added numerous blood pressure meds. I was given the news my son was fading and we had to find a donor - quick!
I've had many "worst days" - that ranks number one. I've been told my son wouldn't survive fetal surgeries, birth, dialysis, surgery when his potassium was critically high...but in all of those I had hope. All of the things we were doing, we were doing it to help him out. Now what was "helping" him (dialysis) was slowly killing him. It was much too harsh on his tiny body. The nephs told me at the beginning that the chance of him making it to one year on hemodialysis at his size and age were practically non-existent. He made it 13 months. :) But he wouldn't have made it much longer I'm sure...
Last year was HARD at this time. Very, very hard. Being a mom is hard, being a caretaker for someone that is sick is hard, being an advocate is hard - being all three at once - its indescribable.
This Halloween I took a racecar driver and a stink bug out to trick or treat. Both were running up driveways carrying pumpkins and making adults everywhere laugh out loud at there antics. Matthew would "treat, treat" whenever a door was opened and happily shout "appy Howie ween". He stayed up late and we divided candy. We watched Wow Wow Wubbzy's Halloween episode on tv and just laughed and cuddled, going back and forth between couch and floor depending on where big brother was. (Matthew can't get enough of his big brother!)
Halloween is now my new favorite holiday because it will now symbolize nothing but treats for our family. Good memories, sweet moments and the cutest little boys having so much fun together. Yep - surely beats last year...hands down!