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, March 12, 2017

When EVERYONE Thinks You Should Feel Lucky, But All You Feel Is Sad


As a seven year old you see your sibling come home from the hospital with three new stuffed animals, a giant bag full of crafts both done and yet to do, a pile of presents and cards from hospital visitors, and all kinds of tales of hours of movie watching and laying in bed – its hard not to be super jealous. Even if you missed them and know there were other difficult, painful, or traumatic experiences at the hospital it all doesn’t matter anymore when your a kid staring at a huge pile of new “stuff” that your sister got at the hospital.

Then you start to say things like, “Oh no it’s alright I don’t need that _________ (whatever is it x, y, or z) I didn’t do anything to earn it. I don’t deserve it.” You see that since it wasn’t her birthday or any holiday that she must have “earned” all those cool presents from being sick. It make sense to you so you go on thinking that it sure must be awesome to be sick enough to go to the hospital.

On top of that you wake up each morning and your day (breakfast, going to school) can’t move forward until all the medical treatments are done for your siblings. Your Mom is fussing over treatments and setting up machines and putting together piles of pills but none of it is for you. You’re different. It seems like a rip off. It seems like you’re not as important. It seems like you’re left out. It seems like for whatever reason you are holding the short end of the stick all the time.

Your emotions erupt from all the confusion. You’re in a family where it seems like you don’t belong at all. You’re the only kid of four who doesn’t have Cystic Fibrosis and your sad and angry about that.
So as the parents of the 7 year old who starts to say things like “No I don’t need that ________(whatever it is x, y, or z) I didn’t do anything to earn it. I don’t deserve it.” Your heart hurts for him and you try extra hard to show him love, encouragement, and to include him in as many ways as possible.
One of the ways we found to show some special love to our non-CF son is take him to Build A Bear. This was an obvious choice after Maelee got out of her November 2016 hospital stay. She had received a very special PICC line Build A Bear from Child Life at Phoenix Children’s Hospital that our son admired greatly. Also his brother had received a very special G-Tube Build A Bear from The Goodman Family Foundation right before he got his G-tube in April of 2015. Since our kids are still in the age and mind set where stuffed animals are golden gifts, taking Charles to Build A Bear was a perfect way to help him feel included.
As I heard myself saying, “Charles we are going to take you to make your own Build A Bear,” as he was admiring Maelee’s PICC line bear I choked a bit on the words because I knew that Build A Bear is expensive! But in the end it was so worth it and fun to watch Charles pick out and make his bear.
Another way that we were able to find help for Charles is through a professional therapist. It continues to be special for him to get to go and talk to her all by himself. I am grateful that there was a grant available to help CF patients and their families through professional therapy. The therapist has helped me as well to know how to accentuate the similarities between Charles and his siblings and the importance of one on one time for him.
Our son is in a tough place. He carries a lot on his shoulders naturally so then to add the weight of being the only one who doesn’t have Cystic Fibrosis and be swimming in a world of its constant demands on your family tends to result in a heavy and serious personality. However, the seriousness suits him and benefits him greatly. Plus it makes the times when he lets loose and is uninhibited even more special for everyone to enjoy. We are so proud of his kind and loving heart and his steadfastness.
As he grows up and more adults and peers talk to him and get to know his situation surely he’ll begin to hear things like, “your so lucky you don’t have Cystic Fibrsosis.” What they won’t understand is that he has never felt “lucky” about not having CF. Confused, angry, sad, jealous, and lonely would be more accurate.
What is most important though isn’t our sons Build A Bear or even professional therapy, it is his faith in God’s plan for him. Dieter Uchtdorf said, “There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things (see D&C 88:11–13). It has the power to soften the sting of the deepest wound. It can be a healing balm for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn.”
I am so grateful to be a woman who knows Christ is my Savior. This knowledge and the knowledge that I am a child of God is what helps me each day in my motherhood and the details of living.


Charles starting his bear building adventure.

The Magical Making of "Spike" the bear.


Outside our friendly neighborhood Build A Bear
(ka ching ka ching)



Here they are posing at PCH's Ronald McDonald house entrance
on the way back to the car after a therapy appointment. Sometimes
he gets to go with me alone and sometimes (on the extra fun days)
we get to take EVERYONE with us.


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