There is a lot no one tells you

There is a lot no one tells you about having kids but there is absolutely nothing anyone has to say about having a critically ill child. Today, as I was having my morning meltdown because I had been up a ton of times, it dawned on me that no one talks about this part of parenting. Adam and I have been going through a few growing pains this year. No, we aren't getting a divorce but we are working through many things that most couples never have to face-the constantly stressful health of one of our children. There is just so much that no one ever tells us. Let me back track-when Weston was first diagnosed, a social worker from the hospital came to tell us that something like 90 percent of all marriages that involve an ill child fail. I thought to myself, that has to be a mistake. Who better to go down this terrible road then your partner? Well, after 4 years of this battle, I have come to realize that it is probably not so much the partner-as the stress. First, you never sleep. Whether it is because you are giving meds around the clock, dealing with episodes, talking to doctors, etc-you never sleep. You get even less sleep when your child is in the hospital. You have to sleep with one eye open because incompentent people can slip in and jab your poor baby with a needle before you can wake up fully (this has happened to Weston at 2 diff hospitals). So, now that you all know why Adam and I look so rough, we can move on. In our situation, Adam works and I stay home with the kids. I love it and he has blessed me with being able to stay home. That being said, I get frustrated when (usually kind of irrationally) I think he should take off to come be with me at a doctors visit (he comes to the really impt ones but skips little things so he can save vacation)-not vacation for a real vacation, mind you, but saving vacation so we can travel back to a hospital. This creates tension. Not because I don't think Adam loves me or whatever, but because it is stressful being the one always at the doctor appointments relaying info to him. Have you ever taken 6 children to the cardiologist for a 2 hour appointment? if not, it is a real treat. It isn't even that the kids are bad, I am just in such a zone of trying to remember every word she says about Weston. While we are at it, scratch all vacations off your list. Those don't exist-at least not a relaxing trip anyways. Even, if he did have a day left, we would just take the kids with us. Add the stress of giving medications-serious, life altering, medications around the clock. One of which is carcenogic the other of which costs 55,000 dollars. The last time we came home from Philly, I was convinced that I had left all of his meds in the RMD House. I tore the car apart in the driveway searching for his meds that I had already carefully placed into the cabinet inside of our house. Not a good mommy moment as I was hysterically crying. Oh and about that, yeah, I cry a lot. His doctors tell us that many of the parents take sleep aids and it makes me panic more that I might not wake up for something happening to him. No thanks. I worry constantly about taking him to a bad ER. Go ahead and throw those health notebooks (you know, the ones that the nurse at the hospital said to start for each of our kids in case we needed to tell people about health history) away because the doctors ask YOU (yes, mainly mom but sometimes dad) questions and YOU need to be able to answer them on the spot. There is no time to thumb through papers-you need to be prepared and they fire questions at you like no tomorrow. I need to know his weight and height at all times, meds/doses/strengths, pharmacist name, any surgeries, surgeons names, doctores names and phone numbers, health history-this really goes on and on. And you need to know it on the spot-there is no time to think.

Friends-well, those are few and far between. Real friends anyways. What the heck do you tell people when they ask how he is doing? We usally say "God has blessed him with another day" as I fight back tears. Then, people smile and wander off awkwardly. We understand. It is also hard for us to get together with other people. In the winter, we hibernated. Although I told people prior that I wouldn't see them until Easter, they seemed stunned that we followed through. No one else understands not wanting your sick 4 year old to be infested with whatever thing 10 people are posting about on facebook. No thank you, we will stay home. We really seem to have offended people with this, this winter and if we offended you, I am not sorry. We did everything we could to keep him healthy.

A friend told me the other day about how, now that they are done having kids, they are going to plan a big vacation without their kids to work on them. I thought to myself, we won't ever have that time to do that-both the vacation thing and the completely working on us. Weston's health is our priority 100 percent of everyday. I pray nightly for his wife because she is going to have to be a strong woman-not only to put up with my insanity but to take on having an ill husband. We took a marriage class a few months ago and it was nice-but the entire time, I was busy making notes in my marriage handbook to not forget some medication for Weston. I was a nervous wreck.

Please don't get me wrong, we love Weston and we do not fault him at all for any of this. I just needed to vent. Get all of my thoughts in one place. God has blessed us with a perfect little fellow and gave him a special heart and lungs so that he can teach the world about perservance and strength.