Going with the Woe

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

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!

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.

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!

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!

The best medicine

Our little family has been through lots of medicines and supplements - especially in the past nearly three years (when I found out I was pregnant). Some work wonders right away, others take some time for the body to adjust to it. A lucky few have no side effects (or no side effects worth mentioning at least) and others....AAAAHHHHHH! Do you want to know what my favorite is?
A smile. From a stranger in the hospital halls, a doctor that is just as frustrated as I am, my children (their smiles light up my entire life) or even an old photograph of simpler times with smiling friends. Smiles are therapeutic.

William - 8 months old as Charlie Brown

Have you ever had the thought that things just possibly can't get any worse? Ask that to the parents that buried their child last week; the parents in the PICU today watching the clock and hoping they are granted another hour to hear their child's soft breath. Maybe this is just a sensitive subject for me in general. I've invited myself to my own pity party a couple of times for my own son's situation. Luckily, I just make an appearance - see the party is really a drag - and then get the Hell out of there! I don't know...even though I know life has been rough for my son sometimes...I just can't shake the feeling of "wow - how lucky are we!"

Matthew's last surgery and hospitalization before transplant

Two of our kidney friends are having a rough time at the moment. It affects me...maybe more than it should. But I can't help but put myself in their shoes...knowing that one day...it could easily be my son. I think making the hospital rounds so often in a young life, you do feel a connection and an empathy that perhaps others do not. I know I didn't - until it happened to me. When William was sick with a high fever and vomiting at 10 months old - I just thought the world needed to stop for us on the way to the ER. Now I see I overreacted a wee bit. ;) But it was my child in distress. Now when that happens, I offer up a little praise that it's just a virus and will run its course, happy to know it isn't something scary!
And when I find myself getting overwhelmed - I smile to myself. I might look a bit goofy to someone passing by, but I'm pretty goofy looking naturally already. ;) I have smiled while rocking a screaming, hungry and mighty angry 2 month old that was waiting for his turn in the OR, because it was one step closer to our goal of transplant. I've smiled through the vaccines of my first born, knowing all the pain he would be kept from in the future with just a couple of tiny pricks. I've smiled as my husband has boarded a cutter in the coast guard during our first year of marriage, because I knew eventually he would come back. I've smiled as I have visited my grandparents' graves, because now they are truly at peace.



Yes, smiling is often underrated. It helps. It heals. It doesn't take away all of the pain, but it acts as a rainbow during the storm. The promise that one day, the smile will be real...even if you think it won't. Just smile.

9 lives and outfits

This time two years ago, I was finally breathing a sigh of relief. We had received a call at 6am saying we needed to come down to the NICU right away, Matthew had taken a turn. Just a couple days prior we had started getting the paper work ready to begin our PD training to go home, so this call kind of came out of left field. I quickly called Ian's parents to come get William (as they live 5 miles from us) and ran to the car.

Matthew, the week before he got sick.


Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.

Here he is back in my arms that afternoon:


Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.

Escape

I am proudly announcing that I have seen the new Twilight movie 3 times in one week. :) Yes, I love it and yes I will be 31 in less than a month. It's not so much the movies, although they are entertaining and the effects are getting better with each movie (in my opinion), I'm in love with the books.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter. And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube. I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were.
I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.

Guilt trip?

So, my husband and I have the opportunity to go out of town for the weekend without our kids. When I say "go out of town", I mean I will accompany him on his reserve duty down in Savannah. No amusement parks, no villas, no spas. Just 2 evenings spent together as a couple without kids, because he will be working during the day. I'm getting a little flack for this. Not much and not enough to phase me in any shape, but enough to go - "really??".
The longest my husband and I have been away from our kids is 19 hrs. The farthest we've actually gone is one hour away. We've been "gone" twice. Once we left in the evening and returned before lunch for our 5 year wedding anniversary at our wedding night hotel. The other was a day in Chattanooga for my 30th birthday last year.
I honestly do NOT like being away from my kids. I'm kind of a control freak like that. :)Matthew has a very structured day and William is a homebody.
From October 09 til April 10, I didn't leave the house unless we went to the hospital. That was it. I couldn't risk getting sick and bringing it home to one of my kids. Couldn't risk missing transplant or "killing" the kidney with a simple cold virus that is NEVER simple in an immunosuppressed child. I have worried since February 18, 2008 when our lives changed forever. I can count on one hand how many times I have slept through the night since Matthew was born. And if I'm going to be honest - they were because I completely and totally drugged myself to sleep. The count is 4. Four nights in total of 733. Not because my kids aren't great sleepers - they really are! But because of the way my son eats...through a tube in his stomach. Milk products only last so long when exposed to room temperature you know. Gotta get up and change it out twice every night.
I put my kids first, before me, before my husband, before my house. Some don't agree with that and others do. I don't do that for anyone, but my kids and myself. I have my reasons. Whenever someone would tell me, make time for yourself or make time for you as a couple. I would honestly think - how selfish. If I go out it is after my kids have had dinner and are either getting ready for bed, or are already asleep. It just makes me feel like a bad mom to go out and "have fun" while they are awake and staying home. But now, I'm about to do just that.
And I don't feel guilty about it.
I might once I get ready to leave, or when I drop the boys off with their grandparents...but really - I need this. My husband and I both NEED this. Do you know how much strain comes onto a marriage when you have a sick child? When you spend weeks at a time at the hospital away from each other? When you have to find extra money to put aside to pay for medications when the state insurance program runs out? When dad has to choose between going to work to keep a job that pays the bills or going to the OR waiting room with me? Have you ever had to "catergorize" your son's surgeries into low grade and high grade to see if dad truly needs to be there in the event your son doesn't wake up? Have you gone to sleep with a pager in your hand? Do you have four different doctors, two nurses, two therapists and a transplant coordinator taped to your refrigerator, but know the numbers by heart?
I love my life, I love my sons, and I love my husband. I am doing this for all of us. I need to recharge my battery. Ian will be staying another week in Savannah when I get back. This is hard to do by yourself. All the meds, all the diapers, all the boluses, and the nighttime duties too. I've learned so much because of this wonderful and sometimes frightening journey. Now I'm learning to step back. To trust others and let it be known that it doesn't have to be on me 100% of the time. Matthew is at his healthiest he has ever been and I'm learning to trust that. I'm still used to the "old" days where he could spin out of control in a moment's notice due to his congestive heart failure, his 7.8 creatinine or his 160/110 blood pressure readings. But now his days consist of playtime and temper tantrums (could really do without those!) and things even seem (dare I say) normal! This is our chance before the surgeries start again. Upwards of 5 additional surgeries making a grand total of 25 in his little lifetime. Yes, I need a recharge, some down time.
I'm sending my supermom cape to the dry cleaners for the weekend. I'll pick it up and wear it with pride when I get back. It will be shiny and new and ready to face all the challenges and trials. It just needs a little TLC too.

Oldie but goodie

Yes, MANY special/medical needs moms swear by this writing. It completely sums up our way of life perfectly and helps others to understand. We don't want pity, we don't want awards, we don't want recognition...we just want the best for our children.
So - without further ado, I give you Holland. :) It's a GREAT place to be!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Too much

So I've been wondering...have I gone too far with my son? I look at him right this minute and just say that's absurd. He's SO happy, he's SO healthy! How can you doubt yourself Karen? Well, pretty easily actually. I am a mom, and mom's always wonder if they have done the best for their children in every regard. And at the moment...I'm wondering if I've done too much.

Yeah, after my impromptu nap last night at 8pm...I was wide awake by 11pm to watch Private Practice (the spin off of Grey's Anantomy). I'm a junkie to medical drama where adults act like teenagers getting mixed up in each other's love lives. It's a flaw I've learned to embrace. :) But on that episode there were parents of a tiny 25 weeker with lots of complications. The parents were holding out on hope that their child would get to live a normal life one day if they just kept fighting. The doctors didn't agree. They were suggesting medical assistance be stopped. In the end, it was. The parents finally got to hold their baby free of wires and just let him feel love.

Now no way can I compare my son's medical journey to one so severe as what this little guy was facing...but the similarities of what the doctors said kind of brought it home. I was told to terminate before he was even born and I resisted and fought for him. I was told by FAMILY and FRIENDS that said too much was being done...why don't I just stop once he was born. I've had to push the medical community, transplant team and home healthcare personnel so they would realize Matthew was a person. Not a number, a statistic or a nameless being. He was MY boy and I wanted the best for him.

I also wanted the best for me. I wanted Matthew here. I kept reasoning that if God wanted to take him...he'd do it anyway. During surgery, during sepsis or even while driving over ice to get him to hemodialysis. He's still here. I think he has a big purpose on this earth...I can't wait to find out what it is. But also, I wonder if my selfishness is what has kept him going. Did I "taint" his outcome due to my pushiness?

If I hadn't gone along with the interventions and fetal surgeries...Matthew wouldn't be here. There would be no "well, a miracle could happen". You can't grow a urethra if you don't have one. His lungs would not have formed, his heart would be misshapen and his body would have curled in over itself from lack of fluid and space to stretch out. Did I "play God" in advocating for my son? Did I push the medical community to keep him alive when according to their books, he should be dead? Who am I to put my son through 20 surgeries just so I can hear his giggles?

I'm his mom. I wouldn't change a thing. God gave us the tools of surgery, dialysis, and medicine to make things better. They work with God, because through Him all things are possible. My son is here. He shouldn't be. He's used up is "nine lives" and is on number 11 right now. God reaffirms that to me through people like Marie. Through donors everywhere, nurses, doctors, surgeons, pharmacists. God gave them their gifts for a reason. He gave me my son for a reason. I am grateful for both.

I am throwing away the receipt, no exchange necessary for Matthew. Thank you God for the perfect gift. :)

And then it snowed

If you couldn't tell by my previous post...I was having some hard times dealing with sweet Aubrey's passing. I just didn't see what purpose that could have served. But then realized the purpose wasn't for me to understand. I felt both the guilt of having a child that has defied death (let me count real quick) 9 times and the empathy of being a parent that has had to deal with the shock, confusion, fear and anger that their child was chosen to be so greatly tested.

If you have been reading my blog since the beginning (I think the whole three of you) then you might remember my feelings on snow. No, not the blizzard in the east...just some random snow flurries or a light dusting that makes a southerner look around and say "wow, that's beautiful". Every time I had doubts during my complicated pregnancy, namely before each of the fetal surgeries...God would send me snow...even in April. :)

It would cleanse me of my selfish wants and reaffirm my faith that God was in control of the situation. I just had a supporting role in all of this, no longer the lead actor. (Kind of crushing to my Leo ego too). I would pray that God would send me some sort of sign that all would be ok, that I could walk into that ultrasound room with my head held high KNOWING I would hear a heartbeat instead of silence. The bad thing about having a baby that was without amniotic fluid - risk of cord compression/suffocation...I was a major kick counter momma!!

On the way to memorial service, our car was hit with tiny snow flakes. Going into the church, flurries clung to my black dress coat. Waiting in the receiving line to pay our respects to the family, I noticed white dots swirling in the trees and bushes outside the windows. And again leaving the church, tiny flakes were flying into my red eyes making them sting all over again. Once I reached my parents house to collect my boys, it stopped.

God was telling that He was with Aubrey and Aubrey was just fine. Don't worry Karen, I've got this family well covered with family and friends and love. Just be there for them, share Aubrey's memory with others and love each moment you have with your family and children. Be extra thankful for the handcrafted snowflake I put into your life on January 14th when your son's blood was truly cleansed for the first time ever.

I will.

I don't get it...

Why is God mean? I know He is fair and just and loving...but yesterday, I didn't see that. My friend's daughter, whose 2nd birthday is on the 15th, passed away in the wee hours of the morning yesterday. A nearly two year old...seriously...that for an entire year of her life had to battle cancer. She was "cured" of it through a liver transplant, only to relapse 6 months later. Yet the drunks, rapists, murderers and just plain jerks are feeling fine and living fancy free!! It's a crock of crap God - just so You know.
I don't understand why children die, why children suffer. I went to Sunday school. I sang "Jesus loves the little children". It completely stunk that Aubrey had to suffer for months, but I think what is worse is the suffering her four year old sister will endure now. How do you explain death to a child that can't understand that fact that a cold will not kill her. Daddy is going to work, he will not be gone forever like Aubrey. You will see Aubrey again one day. No, not tomorrow sweetie. Yes, we want you play together too, but please don't talk about leaving mommy and daddy anymore - it makes us sad.
I just can't imagine!
I know God's purpose is better than our own. I know God knows more than us. I know God is watching over his children of all ages. But it doesn't mean it doesn't suck. It does - big time.
I have NO sympathy for those people that drink and smoke themselves into cancer. Well, that's too bad - guess you shouldn't have been a chimney for five decades huh?? I'm a firm believer in what goes around comes around. If you are stupid and put crap in your body, your body will get even with you - whether from a heart attach with too many Whoppers or emphysema from too many cigarettes (which is what killed one of grandfathers). But a child hasn't been around to do anything wrong! I know God doesn't work that way - punishing those that speed or lie or cheat on their spouses (I would LOVE if He gave everyone that commits adultery a scorching case of the clap - again...I'm mean like that). But He's not. I just don't get how He picks and chooses. I hate how He picks and chooses. Why this child and not some other child? Why that child and not that child there? I guess if I had the answers I would be a millionaire and that is not the case!
I will see how God unfolds His plans with their family and with our family. I'm SO happy He placed us together earlier last spring. I hope I am able to provide any means of comfort and support that I can to them at this time. Please keep them in your prayers. Pray for the parents that teeter back and forth between shock and despair. Pray for Aubrey's older sister that she will get through this with as little long term effects as possible. I hope Aubrey visits her sister in her dreams often. Pray for the grandparents and extended family, for they lost a loved one too but are often overlooked during the funeral and weeks following. Pray that Aubrey is finally at peace and feels no pain. I pray she is happy, healthy and running wild.
I will miss that twinkle in her eyes.
The last time I saw her, I was leaving with Matthew from dialysis and she was coming in for transplant labs. Her mom and I stopped our strollers a minute to talk to one another while the babies talked to each other. I looked down and they were holding hands. I think they would have been great playmates. One day...one day. Rest sweet Aubrey, you deserve it little angel.

Hidden

Look out the window? See Mother Nature's display. God is painting the trees again. Beautiful isn't it? Did you know it was there all along? These fiery reds, striking oranges and vivid yellows...all hidden away under a peaceful shade of green. Yes, anthocyanin and carotenoids are there the whole time, you just can't see them. They need a catalyst to show their true colors and certain situations (dry, warm summers followed by cool, wet fall nights) will make the show even more spectacular. But I'm not going to give a science lesson (darn huh) ;). Just know I did very well in my plant physiology class and have a ton of respect for all the plant processes, that when broken down seem more complex than anything I do during the day!
Hidden...we keep many things hidden in this house.
Feelings are hidden to protect others that "haven't been there before"...to make it look like all is fine and we are coping. That having a medical needs child does not put a strain on a marriage while one partner fights for a child and the other fights for the couple...never at the same time, so always at odds. That others don't have to tip toe around us for fear we will cave in to depression or anger or finally snap. Feelings that we can not show enough gratitude to all who have made us feel special yet normal. Seriously, you'll never know the depth of love for you in our hearts.
But, feelings are expected to remain hidden...they are personal. Each person copes differently with feelings. I'm fortunate enough to have an outstanding husband that doesn't let me clam up and sulk...though I want to! He makes me talk things out and feel better while crying on his shoulder and snuggling in his protective arm. It feels so good to be there...protected. *I have a secret to share with you* <(whispering) I sometimes climb into my husband's arms, he scoops me up like a child and I wrap my body around his and stay there for minutes on end> I need that when I feel my most vulnerable. I need to be enclosed fully to finally feel protected from all the crap out there that is heading straight for me.
And now, I'm going to do that to my children...and we are ALL going to hate every minute of it. :( After this weekend, we are going into hiding. We ARE in hiding already...kind of. To the point that we are not going to the kiddie places or high crowd areas. But now we truly will be hidden. I will allow one final hurrah so to say with trick or treating in my in-laws neighborhood and then my dad's birthday the next day with the cousins...but after that...no more. :( Of course we will see the grandparents, but we can't be around kids of school age - pre-school through college. It's all school and school is just another name for educated germs. Matthew will not be allowed to move ahead with transplant if he has so much as a cold. He NEEDS a transplant. Those sweet potential donors are trying their hardest to get him one. We should find out in about a week. :) If no one is a good match, Matthew will be listed.
Here's how it goes, Egleston will not list a baby (especially one that is about to reach his one year dialysis anniversary) while he still has living donors going through the process of testing. A baby that has been on hemo for that long, with a common blood type, will get a kidney within a month - tops. whew! I was one relieved momma after I heard that! Living is better - will last longer, will work quicker, but a cadaver kidney still saves a life and honors an angel.
So in order to protect my family, I have to PROTECT my family. I know this will be hard. I'm not all that happy about spending day and night at the house. I just want to cry thinking about William not seeing any friends. It makes me so sad that Matthew doesn't get to experience sights and sounds that every other one year gets too. But if I don't, he might never get to experience anything. He can't experience much from a crib in the dialysis or from the PICU hooked up to monitors and IV's due to an infection/virus. I KNOW this is going to tick off some people...especially come Thanksgiving and Christmas...but they will just have to get over themselves. They are big girls and boys that need to act like that. If the shoe was on the other foot, they would do the same thing. Family comes first, my sons come first! We will spend both holidays quietly at home. And we will miss the extended family and friends VERY much.
But in doing this THIS year...in remaining hidden...image the wonderful display NEXT year when we come out. When the catalyst (transplant) occurs and Matthew is free to show his true colors that have been hidden behind the red and blue catheter lines. When he shows us what a kidney can really do! Be on the look out - God will be "painting" the picture of pure health! :)

Last Christmas, Matthew and William in front of the tree.

Are you KIDDING me??

* OK - little parental warning - harsh and unladylike language will be in this post; can't help it...I'm pissed *

I just found out something about a friend. She is jealous of me. No, I take that back - she's jealous of Matthew! Well, he is waited on hand and foot, surrounded by toys and adoring family members and has someone to wipe his tiny hiney daily...that is a pretty sweet existence if you ask me! BUT he also is dependent on a machine to live both nightly (feed pump) and weekly (dialysis), has rickets so severe his bones look more like swiss cheese and has a blood pressure issue that is not going away with the two meds he is currently on. Yeah - I'm sure we all envy that!

No, that is not what this person envies...it's the attention. What attention?? The movie script that was thrown at us yesterday or the photo shoot for People magazine where they offered us a million dollars for a spread? Yeah, no special attention here lady. When he is out (and that's a big when because he rarely is out) in public, people don't give him any more attention than they would any other baby. Yes, he's a smiley little guy and people smile back...that's it. I don't flaunt his condition with arrows pointed to every different artificial opening and tube into my son! When I am surrounded by my friends in the privacy of my house or their house, I do show them Matthew's "robo-baby" parts. It helps them to become more comfortable around him. I don't want people to shy away from him for fear of breaking him. He's already "broke" actually. ;) People are uncomfortable around things they don't understand or don't have knowledge of...I don't want those I love and those that love him to be uncomfortable in anyway around him. Babies can sense that.

This friend is envious that when Matthew is around people that are aware of his condition, people want to see how he is doing. She is jealous of the fact that people are praying for him to get better. That family and friends gush over a milestone when he reaches it, no matter how delayed it was. Seriously - when this boy starts walking - the WORLD will hear the screams of joy from our house! I am VERY proud of my son. For defying the odds and beating the statistics. For LIVING. For going through Hell and coming out with smiles. He is a gift from God and has changed my life dramatically...for the best!

That doesn't mean he is any better than your child, than my oldest son, that you or me...he's different. All of our children change our lives when they are born. I don't treat him any differently than I have my first son. Actually he gets less time - less story time, less cuddle time, less one on one time - because I have two kids. William knows Matthew is special, but he also knows he is special too!

Now for you to have the nerve to say you don't want to be around when Matthew is around because your child doesn't get any attention...then I say F**k Off! I don't need you and your negativity around anyway. How dare you! How dare you be SO selfish that a sick baby threatens your share of the spotlight. And you think that when he gets his transplant, all will be well again between us? When he gets "better"? It won't. I'll be even more proud of him and I'll have another person to boast over too - his grandmother that is giving him the gift of her kidney.

I wish with every fiber of my being. With my heart and soul. To take away all of this pain and utter crap my child goes through every day of his life. I would gladly be beaten, whipped, broken and left for dead to trade places with him. That is exactly how I feel sometimes at the end of a bad day. The bad days when he has spent 4 hrs in surgery. The bad months when he is in need of three surgeries within 20 days of each other. When he cries at the sight of the hospital doors because he doesn't want to be messed with any more. It KILLS me. You want this? No you don't. You have no clue what you are talking about. And I'm not cruel enough to wish it on you.

Your shades of green jealousy are turning your soul black. I'll pray for you.