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 29, 2017

Will I Ever Stop Throwing Mental Tantrums?


At the beginning of the year I wanted to write every week but I only lasted a few months before I choose not to keep that goal. When I did sit down something always came to me, but I stopped sitting down to try so things stopped coming. Hopefully one day I can be stronger with self-discipline but this instead has been a season of reading books late into the night.

This post bike ride selfie sent to my husband to have proof I
took the girls out for a morning bike ride probably
makes you wonder, "does she keep a piano in her garage with her bikes
or bikes inside the house with her piano." The answer is none
of your business. I can do what I want with my bikes.
Catching up on our CF news we had a positive clinic visit right before school started. The only sad part was that the scale in our clinic had broken so they had a loaner scale from another department. The night before I had happened to weigh my g-tuber on our home scale to see a monster weight gain and did a pre-victory celebration but then the next morning on the loaner scale in clinic he was five pounds less. I wanted to throw a tantrum and jump up and down and scream something about the scale telling lies but instead chose to act like a big girl (note the work ACT because I’m really not a big girl on the inside and throw tantrums in my head all day long. But I have gotten to be a pretty good actress over the years).

To sum up the rest of the clinic visit. We discussed boogers, poop, and BMI. All the typical hot topics. We adjusted some medicines in hopes of more comfort and life enjoyment all around the CF table. Ruby is at the magical age when instead of just whining and being miserable during long doctors appointments she try's to do whatever she can to escape from the room we are in and run through the halls screaming so that was fun as usual.

Now I’m all caught up on the basics of our CF times three kids story so I can move on to a personal antidote that I think is worth writing about.

I have the opportunity to teach the five turning six year olds in church. Last week our lesson was titled “Jesus Christ Loves Each of Us.” Its purpose was to “help children know that Jesus Christ loves and blesses children everywhere.”

A suggested lesson development was to tell two stories of Jesus and his relationship with children. The first story is found in Mark 10:13-16. We got into the details of the story and I explained that at first the disciples of Jesus stopped the children from coming to see Jesus, but when Jesus saw that he stopped them and let the children come. We talked about how Jesus “took them up in his arms, put his hands upon them, and blessed them” (Mark 10:16)

Since we only have a handful of kids in our class as we got to this part in the story I started to walk around to each five turning six year old and give them a big hug and let them know that Jesus loves them too and would like to give them a big hug and encourage them and bless them in their lives. By the time I went around the little class circle and was turning to give the last child a hug I turned to him to see his arms spread open waiting for me to come. It was the best part of my week. My heart was touched and I knew that for that little second when I turned to see his arms open wide that I got a heavenly hug as well from a sweet little 6 year old.

As I sat down happy to see the kids had enjoyed the story I began to tell the second story found in 3 Nephi 3:17. It is a similar story of children being blessed by their Savior Jesus Christ but this time. “he spake unto the multitude, and said into them: Behold your little ones. And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of the heavens as it were in the midst of fire; and they came down and encircled those littles ones about, and they were encircled about with fire; and the angles did minister into them.”

When I finished the second story another student in the class asked, “well are you going to go around the circle again and give us another hug or what?” It was fabulous, just what I needed and apparently what the five turning six year olds needed too. It was a great day to be a primary teacher.

I’m grateful for the opportunity to learn with the primary kids and focus on such wonderfully basic topics as “Jesus Christ loves each of us.”

PS – Plus being with primary aged kids is hilarious. You NEVER know what is going to happen. Like earlier that same day at church when we were all together from ages 3 to 8 learning about Moses and the children of Israel getting manna to eat. The magical teacher of the day had asked all the kids to “close their eyes very tight and not peek” so she could proceed to scatter some modern day manna on the ground for them to find (gram crackers). While my own eyes were squeezed shut tight and not peeking the next thing I know I’m being kissed on the lips. Thankfully it was just my own little 5 year old son, but still it makes me nervous to have a 5 year old boy in my charge who gets ideas like kissing women on the lips when their eyes are closed.

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.