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.

Saturday, March 26, 2016

Raising The Queen



There is of course a natural prestige attached to the baby of the family. The great part about that is that every kid gets a chance at having it, but of course the last duckling gets the longest run. So now we have Ruby getting her shot at all the glory of being the baby. It’s easy for me and her daddy to shine the spotlight of babydom on her but it is really entertaining to watch her brothers and sister do the same.


It starts first thing in the morning. The other kids wake up and are ready to start the day and I shoo them away to the farthest part of the house away from the baby in hopes that she will sleep a bit longer. As soon as they hear her make any noise on the baby monitor they all come racing back to her room to see her and to play with her. If they are doing their vests and medicine when she wakes up they all insist on me bringing her to each of them to say good morning before they will continue with their tasks at hand.

They all dote on her and fight over her attention. All three siblings will go out of their way to make sure she is comfortable, happy, and not in any way fussing. If Ruby gives a smile or a laugh to one brother the other sister and brother clamor in to get one for themselves.

Now we just have to keep goaling for all the kids to treat each other the way they treat Queen Ruby. Henry Eyring quotes President Ezra Taft Benson in his talk from 2012.

“Above all else, children need to know and feel they are loved, wanted, and appreciated. They need to be assured of that often. Obviously, this is a role parents should fill, and most often the mother can do it best.” (Ezra Taft Benson)

Then Eyring goes on to say, “But another crucial source for that feeling of being loved is love from other children in the family. Consistent care of brothers and sisters for each other will come only with persistent effort by parents and the help of God. You know that is true from experience in your own families.” (Henry B. Eyring)

I am grateful for families and for kindness and love, and especially for the privilege to raise all my little queens and kings.

PS - We recently had the chance to be photographed by Phoenix Children's Hospital in all our messy glory (notice the kid junk wiped on my jeans in this photo) so we got some new family  pictures.

Sunday, March 13, 2016

A Mother's Struggle, Mary Poppins VS. Military Police


Mornings are often overwhelming for me and I struggle. I feel anxious about missing a piece of the medical routines for each of my three CF kids, and then making sure to give proper attention and love to the one kid who does not have a long list of medical to do's to start his day. I find myself attempting to morph into two different versions of my motherhood that have the same initial (MP). Mary Poppins and Military Police.
Mary Poppins said, “In every job that must be done there is an element of fun. You find the fun and snap”…….wait rolling out of bed EVERY morning and having your Mom bugging you to get your 35 step medical routine done before you then leave for school all day does not sound like it could be turned into a game at all.

                My inner Mary Poppins that really likes making appearances as often as possible has a hard time showing up in the morning during treatments. Instead the old Military Police Mama shows up. She does not turn anything into a fun game, but has a short temper and only wears sassy pants. She scares Mary Poppins back into the painting. As I realize this on my military police mama morning’s I try to figure out how I can stay on the ball as a mother, person, and woman in the midst of the pressure of remembering all the medical and emotional details for all my babies – how do I let Mary win over the military police mama?

                Well for one thing I have to get myself in order. What I have found works for me is as simple as making time for prayer, eye liner, study of spiritual text (scriptures, conference talks, or the Ensign magazine), and doing my hair.

Prayer – Talking with my Heavenly Father about my blessings, family members, and plans for the day helps me to clear my thoughts and focus on what matters and where my joy and peace comes from. It helps the day start off feeling even better than getting all three pieces of the mushroom in Mario Bothers on the first try.

Eye Liner – I don’t just put on eye liner, but I have a simple make up routine that makes me feel polished and ready for the day. Call it vanity, call it a mask, but definitely for me call it a little hope in colorful liquid, powdered, and cream form. So when the parts of the day come when I am washing up and wiping off another humans bodily fluids, being screamed at, argued with, ignored, and fulfilling endless requests for assistance I can know that I am doing it all looking as beautiful as I know how to look, and also of course it gives me physical hope that I am not an animal despite often feeling like one.

Study – I feel so happy after I listen to, watch, or read a conference talk. I always find a piece of advice, encouragement, or receive inspiration for an idea to try that will benefit my current personal situation. It is like changing the light bulb in a room that you have gotten used to dim lighting in – WHOA what a difference to my mind and heart. I have started to really enjoy reading the Ensign magazine on a tablet through the Gospel Library app because I can read an article and click on the scripture references as I am reading and get pieces of the scriptures pertinent to me instantly.

Doing My Hair – I guess this could go in with the Eye Liner paragraph and I know it’s another chalk mark up on the vanity board, but I am a happy girl when I have cute hair. It makes a difference in my day when I have taken the time to fix it, even if it’s just a smooth ponytail.          

                Getting all of these things done does not happen every day. Sometimes pieces of these things get done, or sometimes I wake up and automatically surrender to the stress of the checklist and let it lead me down a grumpy and pitiful path. But I tell you what, I like being Mary best and here's to a spoonful of sugar.