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.
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