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, January 27, 2016

The Nice Lady in the Yoga Pants


Even the dog was worried about Orson

It is easy for me to get self absorbed when the kids are sick. I especially feel like its every mom for herself when I go to the doctor’s office with sick kids, or even for a well check. I am paranoid (absolutely positive really) about every chair arm and touchable surface and person in the doctors office being covered with all sorts of raging contagious nasty’s. The kids get a reminder lecture every time we pull up to our pediatrician’s office. It goes something like this,


“No, you cannot play with the toys. Don’t touch anything. Just sit there and watch the movie they have on the TV. I brought fruit snacks for good listeners, and yes if you have to get a shot we can get an ice cream cone (we get steroid shots frequently so its always on their minds).”


I know that I am not alone in this maternal doctors office waiting room quest in regards to the avoidance of getting even more germs. I also know that most places we go outside our front door are the same or worse in regards to touching germs that can make us sick, but in my mind it just seems heightened at any medical facility (don’t even get me started about how I feel about lab work offices, barf – they are like the DVM of the medical world).

Like all kids and all times parents lecture, sometimes they listen, often they don’t. So I hover and squirt sanitizer frequently, while loudly whispering reminders about not touching this or that surface, and oh yeah threatening with fruit snack denial.

Recently Orson dipped from being his regular normal cheerful self to being a stumbling high fever ridden sleep all morning kind of guy. So I get him and the baby in the car and head over to have him seen by our pediatrician. His fever kept climbing higher all morning and I should have guessed he was going to start puking next. I had to coax him out of the car because he was so out of it, normally I would have carried him but I had the baby on my hip so he had to walk. As he takes his first step into the doctor’s office he starts to yak. I pull him back outside in time for the puke to only get on the doorstep and not all the way into the lobby of the waiting room. I am directing him to puke into the flowers next to the front door and he is stumbling around coughing, crying, and puking all at once. All this is happening while the front door to the doctors office is being held open and all the other doctors office waiters are politely trying not to stare.

The puke (thankfully it wasn’t much because I couldn’t get him to eat all morning) needed to be cleaned up. Orson was huddled in a sobbing ball of boy next to my diaper bag on the sidewalk outside the doctors office. I was holding the baby and had no place to put her as I attempted to clean up the puke and get Orson settled down and into the office.

As my quick thinking skills are working as fast as they can to solve this problem, (I am making a plan to run to the bathroom and grab a wad of paper towels but feeling bad about leaving my kid outside on the street crying while I run to the bathroom and also thinking about how I am not going to get Ruby in the mess), a stranger steps into my brain cloud and shines her light of kindness. She asks if she can hold baby Ruby while I help Orson.

WHAT? Really? You really want to help me? I am not sure if I would be willing to do that for you if the situation was reversed. I would be too worried about getting the “germs” you had brought with you to the doctor’s office. Handing my baby over to a complete stranger not something I would normally do EVER of course, but this solved all of the problems to my plan.

So the kind fellow mother in yoga pants held Ruby who immediately started screaming while I ran as fast as I could to the bathroom for paper towels to clean up Orson and the doorstep as best as I could. After I trashed the towels and washed my hands and after I got settled with the kids on the “sick child” side of the waiting room (the red sea parted for us as we walked through the lobby and to the chairs) I had a chance to observe my rescuer.

She had an infant in a car seat and a toddler with her as well waiting for her turn. I was shocked and so grateful that she helped me. She had in my opinion great reasons to simply watch my scene and silently cheer for me, as I would have done. But instead she stepped into my gross moment of the day and helped me to get through it. I am happy that I did get a chance to sincerely thank her before we left the office. The nice lady in the yoga pants is my new momspiration and a great Christ like example for me to remember.


Sunday, January 10, 2016

The Adrenaline of Accomplishment


Scene : Mike Teevee’s mom from Willy Wonka and the Chocolate Factory (the original movie) climbs aboard the strange Wonka car. Unbeknownst to her she is sitting directly in front of a horn that will blow massive amounts of mysterious looking sudsy bubbles all over her. At first the bubbles shock her, then to no avail she try's to hold them back with her hands, finally she sits in her seat as the obnoxious foam just completely covers her from head to toe. She cannot stop it. Did she look cute and have good intentions of staying that way while she rode the Wonka car to the next stop in the creepy factory? Yes! She had a labor intensive 70’s roller set, pantyhose, and kitten heels on when she started her day – all plans pointed to awesome – not what really happened (a spooky candy factory tour, being insulted, and having her son shrunk to a purse size boy).

Next scene : End of the Pirate of the Caribbean series when the head guy of the East Indian Trading Company is walking elegantly down the stairs on his fantastic ship while in amazing slow motion effects the ship and very railing he is holding onto is being blown to smithereens. Literally splintering to pieces all around him. He does not look panicked, he does not run down the stairs away from the cannon and gun fire but continues to walk with dignity through the chaos with his head held high.

These scenes often come to my mind during the two most crazy town parts of my day, getting the kids off the school and then getting the kids home from school and getting dinner ready. Most days are one or the other of these scenes, but sometimes, SOMETIMES it feels like Heavenly Father throws you a bone and you have this magical day when things you never thought would or could be accomplished get accomplished and you can sit back and say like old Murdock from the A-team “I love it when a plan comes together.”

I had a day like that last week. To prove the extent of the magical blessed morning I had I stopped and took this little video. All 3 vesters doing theirs vests at the same time. Ruby got her Pulmozyme done FIRST THING IN THE MORNING BEFORE THE BIG KIDS WERE GONE! Gasp, shocking, unheard of! Then to top it off Charles the only non vester says to me “Mom can I hold Ruby while she does her vest.” And he did, and she loved it, and he loved it and felt likes such a special helper and has begged to hold her during her vest ever since.
So I had to stop and give Heavenly Father not only a big high 5, but a high 10 and say a prayer of gratitude. Then as I was continuing to realize what this accomplishment would mean for my guilt level and “self worth tank” for the rest of the day I knew it was not a day to be wasted. The adrenaline of accomplishment was pumping and I went outside and lifted my car! Well I didn’t really lift the car but I did get a lot done that day and did move a few pieces of furniture. Days like that give a girl something to recreate and aspire to. Something to look back on and say, “yeah that happened!” So once again I thank my Father in Heaven for giving me hope and encouragement through accomplishment and inspiration to strive for awesomeness for those days when I am totally covered in mysterious bubbly foam and the very stair railing I am holding onto is splintering and exploding around me!