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.

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