I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Wednesday, May 27, 2015

Letter to Orson : May 27, 2015


May 27, 2015
Dear Future Orson,

Last night we both had a big scare. At 12:40am you woke up frantically screaming my name. I went in and from the look on your face I thought you had a scary dream. You saw me and began to cry and stuck your little closed fist out and told me through sobs something about pulling your button.               
 
My heart froze. I expected you to open your fist to drop the button into my hand. Between my own fear of it finally happening, your button coming out accidentally while you are sleeping, and also the look of horror on your own face I stopped breathing. You then dropped into my hand one of the pieces of tape that goes on your dressing each night for your button site. You handed me the little crumpled up paper tape and looked so genuinely concerned that you had done something bad. I checked your button and it looked like everything was in place and fine, you must have just tugged on it, it was twisted around your leg pretty tight when I came in.  I hugged you and told you it was OK that your button was alright and that you were OK. Then Dad helped you go to the bathroom and you came back to lay down. You started begging us to please unhook you from your milkshake, but it was only 12:40 and you wouldn’t be done with it for a few more hours so we needed you to keep it on.             

You were still so shaken up. I think what I realized then was that you have some serious stress and anxiety about this button too.  I know you talk about having a hole now in your stomach and that you never want your button to come out because of the hole that is underneath it.

Dad and I don’t want you to have it either. We wish that we could take it away and not have you do it. I tried really hard to help you eat well enough that we wouldn’t need this button. You and I and Dad when he was home from work spent hours at the kitchen table together negotiating and pleading with you about food. Then during the day when it was just us I would follow you around asking what sounded good to eat.
What the goal is for you and this button and doing the feeds at night is to boost your weight now and for the next couple of years, which will in turn increase your lung function. With stronger lungs starting now you will have the ability to manage Cystic Fibrosis better for the long term of your life.

One day the button will be over. It will come out, for good. The piece of plastic sticking out of your stomach will be gone. Your hole on your stomach will heal. You will have a pretty gnarly scar to show to your friends. They will be impressed. You won’t have cords attached to you every night when you sleep. You will be able to manage your weight on your own. But until then, Dad and I will help you with all that we possibly can to make this a success, to help to improve your weight and in turn increase your lung function for the long term.

Love,

Mom                      
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