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, March 18, 2015

Slicing and Drilling


Sometimes you think you are talking to just your husband but your kids are listening much closer than you realized. I was getting the last few things set on the table so we could eat dinner and having a conversation with Frank that I didn’t think was being paid any mind to by the kids. At some point I referenced “Orson’s surgery.” This is the conversation that followed with the kids. Also note that the only exposure they have had to anyone having surgery is their insanely brave super hero cousin who recently had major brain surgery to remove a benign tumor. The conversation will make much more sense if you have that last piece of information.

Maelee: WHAT DID YOU SAY?!? ORSONS’s HAVING SURGERY!

Charles: (drawing his finger across his throat) Oh that's where they slice you open and fix you up.

Orson: (huge eyes, screams) Someone’s going to cut my head off?

Charles : Yeah you’ve got a tumor.

Mom: No buddy no one is going to cut your head off, its for your tummy….

Charles: (interrupting me) Yeah buddy they will get a drill and go through your stomach.

Orsons: I HAVE A TUMOR IN MY STOMACH?

Charles: Yep I think I have a tumor too.

Dad: NO ONE HAS A TUMOR!

Mom: Orson is having surgery to get a special button put in next to his belly button so that he can get milkshakes at night while he sleeps and grow better. We will hook up a long tube like a straw up to Orson’s button so the milkshake can go into his stomach through the button.

Charles: Mom I think I should probably learn how to help Orson with his machine. Like is someone going to have to squeeze the bag because I could definitely do that.

Mom: Thanks for the offer Chuck, but Dad and I will learn how to help Orson. You aren’t going to have to do anything with it.

Charles: Ok but I should probably learn how in case it’s a Saturday and you are feeling tired and need my help.

Mom: Ok, maybe, we will see. You will definitely be able to see how it works because it will be cool.

Orson: YES!!! I won’t have to use a plate and fork anymore and don’t have to sit at the table!!!

     The GI doctor cleared a few thing up for Orson today about still needing to use a plate and fork during the day. Orson left with a new teddy bear that has its own button. A really awesome organization called “Tubbie Friends,” and the Goodman family, donated them to PCH to help kids not be scared about getting their own button. Totally cool.
 
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