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, August 10, 2016

Hoping for Fearlessly Extraordinary

So since one of my duties as the mom of this household is to decide what is a "Sunday movie" and what is not we all watched the original stage-to-home-movie production of Saturday's Warrior this weekend. No sooner had we started it had we all learned the lyrics to and were singing "Humble Way."

Although written for its humor I loved the confidence and power that the song brought out in the kids and thought it was the perfect mantra for the first day of school tomorrow. So here is a Mother's hope that her children will smile their faces off and remember to be "fearlessly extraordinary." Just like those two missionaries in Saturday's Warrior.

P.S. - I have seen the trailer for the new Saturday's Warrior but haven't seen it yet. I am sure it will be fabulous, but can anyone ever top the incredible hair of the original stage-to-home-movie experience?


Thursday, August 4, 2016

Why Swim When You Can...Do Anything Else?




There are many things in our family that are not options. Most of those things are medically related items. Even Charles, who does not have the necessity for a medically induced regimen is effected by these things that are mandatory items of our day. The day comes to a halt for everyone to get medicine done frequently, really it happens all day and it can be very frustrating, especially for the kids.

 Orson and Charles are best friends (just ask them) but if Orson needs to get his medicine inhaled/swallowed/injected then playtime grinds to a halt (and is often annoyingly interrupted) until the task is completed. So when it comes to other optional choices in life we (“we” as in me and my husband, I don’t have a mouse in my pocket) try to see them as such instead of forcing things that really won’t affect the moral character and happiness of our child.

One thing we have decided to not force on our kids (the parental crowd is going to go wild on this with disagreement I know and I have heard it before believe me) is swimming. Maelee picked it up quickly and eagerly very young. Charles did not (until this summer, hold on and keep reading). Orson has not yet.

The boys love to play in the water but the action of swimming without being able to touch the bottom of the pool is not of any interest to them. Frank and I never having been Olympic quality swimmers ourselves and feeling like it hasn’t stopped us from anything we wanted to do in life, focus on safety and fun in the pool with the kids. Charles was ecstatic when he grew tall enough to walk the majority of our community pool with his head above water. At the beginning of the summer I tried to teach him to swim and lost that battle very quickly. The battle being him insanely angry and upset and me stopping trying came and ended fast with Charles the victor. Then he got a coast guard approved life vest and was worried still about it not functioning properly in the deep (six feet folks) water. So one morning I dragged him into the deep end with him screaming enough to bring out neighbors living around the pool to check on us and he saw that indeed his snuggly fitting life vest worked great. He got the feel of things and the motion of his movement in the water and before we knew it he was taking off the vest and swimming all around the pool all on his own self instruction. Still in the shallow end yes, but hey that’s where I do all my swimming too. So we figure it’s a 2 thumbs up experience (both my thumb and Charles thumbs are the two thumbs in case you were wondering).

So yes there is Charles’ very exciting success story from our pool time this summer, but then there is the reality also that in my eyes especially towards the end of the summer, swimming is more trouble than its worth. With the piles of wet swimsuits, puddles all over the house, any space being used to change clothes is completely trashed, working around the baby’s naps, etc., etc., etc.

Of course I love my 13 month old with all my stinking heart but holding her in the pool is only fun for about 20 minutes. Make that 15 and set the timer please. She proved the need for me to wear a swim shirt this summer when she roughly and insistently pulled down my swim top (and although that’s a great way to make strangers feel awkward and leave you alone at the public pool it is very terrible when it happens around all your neighbors many of whom your attend church with). So with that in mind my desire and tolerance for taking my kids swimming this summer has fizzled out to taking them out of guilt for the sake of their summer enjoyment or doing anything else I can think of to avoid it. So if there are any other moms out there who feel the same way I do in regards to swimming loosing its charm when you have a whole flock of ducklings this comic is for you. For you other moms who remain beautiful mermaids all summer and swim your tails off, my hands are clapping a big round of applause for you right now.











Tuesday, August 2, 2016

Redacted, My First Letter to the Editor

I received my first letter to the editor today. I say letter to the editor knowing full well that I am talking about myself who is also the author of this peculiarly shifting and sometimes neglected blog. So the letter came in the form of a text from the most important guy in my life. So all things considered I thought I would officially redact the illustration of Frank from yesterdays comic post and replace it tonight with a hopefully improved in his eyes illustration.

That is all.

Kamarah

PS - I may or may not be using the term "redacted" correctly this evening.




Monday, August 1, 2016

The End is Near, Summer's End Anyway



At the end of the summer I always balance between hating my name being said every 3.5 seconds with a request attached and then being sad that leisurely time together as a family is being literally sucked away into the vacuum oblivion of the school year schedule. It was a well spent summer here. We all have mixed feelings about the new school year and what it will bring, surely an adventure though so that is always good. So without further ado here is the second submission of “Sanity Choices.”




Monday, July 25, 2016

Heaven is Cheering You On!


When I finished reading this talk, my spirit soared. After reading it I knew that besides of course my family I would want Elder Holland to be transported in a golf cart every 3 miles along my hypothetical future marathon route. Hypothetical in that it would be a physical miracle if I ever did run a marathon. But if I did I would want someone to get this guy out there to cheer me on. Because I think with his powerful words of encouragement I could get through anything.

I was so excited after reading this INFACT that I skipped rough drafts and tracing boards and pencils and went straight for my brightest most powerful oil pastels to really get my feelings across. These are (in my home anyway, you can make your own choices of course) wall worthy words. So I say to myself, “pin this to the wall baby and let the power of the words and images that surround me in my home solidify the testimony I have and want my kids to have. Thank you Elder Holland!”






Monday, July 18, 2016

Sanity Choices : The Pee Drops

Although I have not been writing much on the CF Is Not Forever blog, I still know that indeed CF Is Not Forever. Ideas for posts sometimes float through my brain but I have not been catching them quick enough. I have been enjoying the summer with my family. Also I have been working on a personal life changing goal. Silly to some perhaps, but one I have thoroughly enjoyed working on and am still working on. I hope I get it done in the allotted average time (about 6 months) but each step I take on my project helps me to feel more focused on what I really enjoy doing and what needs to be done. The best part about this project is that for once it is a project that is clearing my life instead of filling it. I hope to finish the project and write about it when its complete.

In the mean time as a sort-of-byproduct to my current big project I illustrated a little comic that may or may not ring true to other mothers of multiple children. My oldest daughter happened to see it after I was done (She likes to snoop on my desk. One of her favorite and best talents is snooping so I let her do it to me now in realization that I am also doing it to her in her room and will continue to do it at an increasing pace as she gets older) and told me it was funny and she liked it. So it gave me the courage to post it on the blog in lieu of my lack of posting. Maybe I will make more, maybe I won't, but it was a fun way to spend my time last night anyhow.

Monday, June 20, 2016

4 Pounds of Awesome : The Smile Says It All



We went to the CF clinic today. Orson had a jaw dropping moment in the vitals room. He stood on the scale to see 40 pounds! This is huge! This is big! What a day! He has worked very hard and with a new combination of many changes since the April 19th visit of this year he has gained approximately 4 and 1/2 pounds in 62 days. For a boy who had had trouble keeping weight on for 2 years this is a massive hip hip hooray!

35 pounds 8 ounces to 40 pounds! He was very proud. If I could have been doing backflips through the halls of the hospital I would have! The nutritionist said she hasn't ever seen that big of a gain in that short of time for a kid with the same pattern Orson has had.

He went from the 6th percentile on the CF growth chart to the 61st percentile. So so so huge. What a blessing to his body and what an encouragement to keep up all the work that goes into gaining weight for this boy!

After we were done with our first round of congratulating and cheering for him he told me and my Mom that we should get on the scale and see if anyone would cheer for us. We assured him they wouldn't, but thanked him anyway for the idea. What a day! What a boy! What a needed tender mercy from Heavenly Father!