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.

Tuesday, August 8, 2017

I Think We Can All Agree


               
Summer gratitude. Summer props. Round of applause for summer. Oldest son getting baptized. Oldest son becoming a Cub Scout. The lazy river. Tubeless hour. Making lots of silly hats. Tucson temple trip. Hearing that tiger growl and prowl 2 feet away from us. Choosing Oregano’s instead of something unique and local. Listening to Stone Fox. Listening to Dad get furious about the grandfather in Stone Fox. Hearing the fascinating and inspiring details of a missionary in Latvia. Charles finally getting glasses. 10 movies at the movie theater for $7 total. Talking through ten movies for only $7 with my mom on one side and my girlfriend on the other. Watching Moana every day with Ruby. Dad’s floral tie. Teaching Ruby to say “surfs up dude.” Burying my boys in the sand. Holding onto the head of a practically life size blow up giraffe while 5 kids rode waves. River offering Orson a free burrito. Watching my daughter be so brave and boogie board in the ocean. Meeting a man under the pier who handed our boys a one clawed crab. Watching the crabs run from one pier leg to the other between waves. Climbing the rock pier. Feeling so proud to make it to the end. Getting splashed by a huge surprise wave. Listening to “A Single Shard” and hoping that Tree Ear comes out OK in the end. Doing hours and hours or origami thanks to a thoughtful gift from a friend to our son. Reading Sadako And the Thousand Paper Cranes out loud to the boys on the same day that a real life inspirational bright and hopeful girl passed away from her own cancer battle. Bawling while I tried to read out loud. Explaining to the kids that crying is a really wonderful thing. Explaining that crying tears is such a great blessing and can help cleanse and heal our grief. Spending more time at the public pool than I ever thought I could. Being really grateful for %40 family pass sale in April. Picking up 2,347 legos 74 times. Looking for Ruby’s pacifier for at least one hour every day.

Laying on my back talking on the phone to my Mom while Ruby climbs on top of me and jumps on my stomach at the same time my boys both simultaneously urgently need help with one particular fold of origami and also for me to pour them orange juice because its too full, then my niece whispers in my ear “Don’t worry Aunt Kamarah I will clean up those rice krispies.” Phone call ends.

Collecting poop for 72 hours for a CF related test. Laughing while I pack ice around the large jar of poop in a styrofoam ice chest that the lid wouldn’t close on. Driving the frozen poop to the lab. Walking into the every-seat-in-the-house-is-full lab with a large jar of poop. Explaining why the sample was a 72 hour collection to the lab tech. The lab initially refusing to take the sample we had very tediously collected by doctors orders for one of our CF kiddos. Calmly but urgently explaining some more. Sighing a massive sigh of relief when I walked out of that lab without a huge frozen jar of poop.

Beating the robotic numerical phone system and getting appointments for 4 x-rays when the human receptionist told me the week before my only option was walking in and waiting for three hours.

Watching Charles win the “stand on Uncle Selby’s back and balance before you fall into the pool contest” with the final count of 42 seconds.

Feeling pretty useless as a mother when my boys prance off to spend four days with their grandparents and don’t even miss me for a second. Then feeling pretty proud that they are fine without me.

Being grateful that my husband cares enough to find me real Rocky Road ice cream with actual mini marshmallows and not the insulting kind with marshmallow cream.

Having a daughter grown up enough to plan play dates through emails and texts. Watching her plan and carry out her own successful book club.

BUT my favorite part of the entire summer and what sums up this stage of our life as a family is our 4th of July. We decided to start toilet training our youngest on July 3rd because Frank Daddy would be home to help me. It went as well as can be expected. We were all waiting on baited breath for her to poop in the toilet. Finally the next day, 4th of July, she did the glorious deed successfully. Watching her brothers and sister cheer for her was a tear jerking standing ovation moment. They may fight and squabble and hit and say hurtful things to each other at times, but darn it they know when to cheer – even nay especially when its for Ruby’s first poop in the toilet.

As myself and the older kids were driving home from the downtown fireworks I asked them what their favorite part of the day was. My oldest son said, “Mom I think we can all agree that when Ruby pooped in the toilet was our favorite part of the day.” Yeah that was pretty incredible. We all agreed.

So minus a few other million things that happened during the last 10 weeks that’s how we did summer 2017. We did no book reports as planned. The grade level worksheet books I bought remain 17% done. I am not sure anymore if I have all the kids school supplies from their lists because they tore into what I bought one day when I was distracted with company and exploded it all over the house and between their three backpacks. Good luck guys! I write it to remember it. I write it to show gratitude that I got to live it. Thanks summer, we love you. Come back again next year. If I win the lottery we will see you in Alaska, for a few days anyway.
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