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.

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!



















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