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.
Sunday, June 19, 2016
Always Popcorn First, Then California, And Totally Ikea
Monday, May 30, 2016
We Saved the Hole (first Adams Family Hit Song)
So as we processed the edge our seat experience with "saving the hole" in Orson's stomach so he would not have to have surgery again to replace his G-tube, lighting struck our brains with the lyrics to a song that would be the big grand finale finish to part one of the currently non-existent made for tv movie about Orson's life with a g-tube. We titled our future platinum hit song "We Saved the Hole."
The title of the song and main stay of the lyrics was inspired by a conversation one day with Orson's surgeon last year. She was educating Orson, Frank, and I about how to "save the hole." Meaning of course to keep the hole from closing if the g-tube ever came out unexpectedly. She repeated the phrase "save the hole," many MANY times in this educational appointment. By the time we left we had made jokes about making t-shirts with the slogan "save the hole" on them, but thought it may come across as lewd or just confusing unless you happened to be a g-tube family.
And yes, Frank and I very frequently discuss slogans for t-shirts because our secret dream is to open up a combo donut and screen printing/clever t-shirt selling shop that would be wildly successful due to our clever t-shirt designs and slogans in combination with fantastic hot donuts.
So while the t-shirt shop will contain this shirt someday, in the mean time this song was born and lives in our family now.
Sunday, May 15, 2016
My Mind Said To Give Up
Orson's Mickey Button deflated |
Shredded Button Balloon |
Thursday, May 12, 2016
Keeping the Tradition Alive....Eventually
There are some birthday traditions in our family that happened on accident and others of practical necessity. I made Maelee a twin sized quilt for her 3rd birthday to fit her bed better as opposed to the baby blankets and hand me down blankets she had been using. So from there on out each kid got a quilt that I made on their 3rd birthday. This tradition was established out of necessity.
Then following along this same time line I was pursuing one of my own ambitions and had finished writing and illustrating Maelee a small story book. I was delighted to find that Maelee really liked the book I had made for her. Charles also noticed this and at around age 3 he began asking me when I was going to make him a book. I told him when he was 4 he would get it on his birthday. So accidentally we established the tradition of the 4 year old in the family getting a hand made book for their birthday.
When Orson's turn came for his 4th birthday (and book) I was not even close to being done with his book. The idea for what it would be about was made clear to me one day last year when I was writing a blog post about the hymn "Master the Tempest is Raging." I love the beauty of the words of that hymn and the picture it paints of the endless cycle of storm and calm in life. Orson is a boy who has a physical storm that not many people understand, but amidst it all he faithfully "sweetly obeys" the will of Heavenly Father in regards to his life. Each day he is a snappy, happy, and sweet person to be around. So to me this was the perfect thing to make Orson's book about.
The best part for me in this book making birthday tradition is that it has allowed me the opportunity to visually create stories which I have always loved to do. I can see significant improvement in each of the books and am excited to find and make a style of illustrating that is my own. Plus there is no other gift I have ever given any of my kids that they have enjoyed more than these books they got on their 4th birthday (Orson practically his 5th, ah hem....). What else could a parent ask for more than for their kids to love the service given to them!
Saturday, May 7, 2016
Hey Mom - Thanks For Teaching Me To Prayer Before We Travel



Sunday, May 1, 2016
That Time I Tried to Cut His Pants

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The "broken in" jeans |
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Of course he would want this cut off right? |
Thursday, April 7, 2016
How Church Can Help You Love Like A Sunbeam and Shine Like A Catholic Mother
I was raised to attend church every week. As I did that with my family growing up we made friends and were able to give and receive help. I know I am blessed to live in a country where I can do it now with my own husband and children. In both instances my family became a part of a congregation of people with shared values and shared experiences that united us with our fellow church goers. These experiences shared together, life experiences - some, where you help someone or they help you to come through a hard time, and also spiritual experiences where you feel the power and love of God together can be found no where else.