Sunday, July 10, 2011


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'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 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.

Thursday, July 7, 2011

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.

Tuesday, July 5, 2011

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 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 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.

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