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 28, 2015

Please Bless Heaven Not To Miss Her Too Much



Ruby came this week! 8 pounds 12 ounces and 21 inches long which gives her a great jump on the growth chart! 

She is exceptionally lovely and likes to be held close to the heart. Labor and delivery was a unique experience because we were able to do it without and epidural this time. All the other kids I ended up getting one, but always wanted to do it without. It meant a lot to me and I wanted to try again this time. I had a very supportive nurse and a doctor who didn't judge me when I freaked out when it was time to push. Frank was a great team mate. He also didn't judge me during the aforementioned freaking out and when I was flailing around trying to get a grip (both literally and figuratively) and caught him in a head lock he didn't mind at all. 

I thought I was going to have her on Tuesday but all my labor stopped at bedtime. The next morning Frank had been at work for about an hour when I called him and told him I was going to head to the hospital because I thought I had a "high leak" like I had with my 1st & 3rd baby. Frank hadn't eaten breakfast yet by the time I called him and I wasn't allowed to eat until the baby was born. He refused to eat until I could so all day during labor Frank and I talked about pizza and avoided the food network. I did convince him to sneak me pieces of sour licorice throughout the day when my nurse was out of the room.

As they ran penicillin and pitocin through my iv and we waited for labor to get stronger we were watching the Halloween episode of Duck Dynasty and I laughed so hard my water broke all the way. 4 hours later Ruby was born.

My mom was with me the whole day before I delivered because we knew I would need to go to the hospital soon and she even slept on the couch in case we went during the night. After having the kids all day the next day with them being so anxious for the baby to be born I am sure she was exhausted. She said that after we sent them the picture of the baby and Frank called them to talk about her that the kids wanted to do something to celebrate. The decided that they would play some music. So Maelee played the piano, Charles played his mini table harp he got for his birthday and Orson played Frank's ukulele. Then as she finally got them to settle down and go to bed they all said their prayers. In his prayer Charles asked Heavenly Father to "please bless heaven not to miss her too much." Talking of course about Ruby.     

So yes for anyone who is wondering our house is a wreck. Yes I am combing my "wardrobe" for stretchy pants. Yes our routine has been literally shattered but we have the sweetest little sister in our house to show for it. Everyone is in love. She is amazing. Everyone is fascinated by her. The kids are all clamoring to help her with absolutely anything they can think of to help with. Everyone comes running when her currently blue eyes are open long enough to look into. Hooray for not being pregnant anymore! Hooray for no epidural (I was presented with an official certificate of membership in the no epidural club)! Hooray for families! And hooray that we have Ruby here!









Sunday, June 21, 2015

Happiness Is Having A Father Who Cares

Want to read an amazing talk by an amazing man on the sacred role of Fatherhood. Check out this one by James E. Faust in the link below.


We are extremely blessed to have a father in our home who cares. He makes us so happy. We all love him more than we can express with words, cinnamon rolls, or homemade cards and ties (although we are trying hard to show it with those things today).

Here are our top 10 father moments from this June to last, though many more than 10 exist. We just narrowed it down as best we could.

1.       Last July Dad got us to Oceanside, California. We had planned the trip months in advance not knowing we would have a family funeral come up. He made sure that on our day at the beach all the kids went on their own walk with him down the beach to collect shells, rocks, and talk. Then he drove straight through from Oceanside, California to Geronimo, Arizona to get us to our Great Grandma’s funeral because he knew it was important to be there.

2.       When school started in August Dad took the day off of work so he could see the kids off to their classrooms.

3.       In September for Labor Day camping he took it upon himself to make special treats for us on the campout. Including brownies inside of oranges and roasted Starburst over the fire.

4.        Dad helped Maelee with her piano lessons because he is the one who knows how to play, not the mama. When Maelee had the chance to play a piece for the “Primary’s Got Talent” talent show he stood beside her providing immense moral support.

5.       The kids were all very grateful and their lives where changed when over Christmas break he introduced them all to old school Star Wars movies. Then to top it off hunted down some clearance Star Wars shirts to wear around for them.

6.       Despite his own desire to go to bed earlier he stayed up until midnight with the kids on New Year’s Eve and made it a fun party with his excitement.

7.       He planned the activities for his families Christmas party and gave us all the opportunity to crack raw eggs on ourselves. In his planning he always is thinking number one of what the kids will think is cool and does exactly that.  

8.       He took us to the MCC rock and gem show and showed us how cool it was to have a geode cracked open right in front of us, and how petrified wood is the coolest thing ever.

9.       He ran 2 half marathons which made the kids so proud and he lets them wear his medals around.

10.   My personal favorite Dad moment this year happened when Orson asked Dad to be the one to stay the night with him at the hospital so they could “camp out and talk all night.”

It is a very special thing to have a loving, unselfish, and kind father to lead our family. I am grateful to him as a wife that he holds the covenants with God he has made throughout his life as highest importance. That he helps me in all I do as a mother, that he forgives me for my mistakes, that he and I can take turns being cheerful and "the fun one" when one of us needs a break. That he can step in and make dinner, pass medicine out, do our CF treatments with the kids, put the kids to bed, or help with homework. That he is there and that he cares. We love our Dad and cheer for all Fathers who care today!

Sunday, June 14, 2015

Seeing the Blame Through His Eyes

I have heard from other parents and seen in my own short time as a parent that my own flaws are magnified back to me to see clearer than ever through my children. When these moments of clarification randomly are received through daily interactions and family life it can be very powerful.

Last week Charles and I were sitting at the kitchen table. He quietly mumbled something to me, which I didn’t catch, and then said “never mind.” I asked him to please say it again. He said, “Mom I know it’s my fault that Orson had to get his button.”

What? Seriously? This sweet 6 year old brother is trying to take this on himself?
I assured him that in no way was he responsible, should feel responsible, or was to blame for Orson’s g-tube button, and then asked him why he thought he was. He said that he knew it was his fault because he always ate his food so fast and then would leave the table to play. When he left, Orson would want to leave too and that’s why he didn’t eat very well and that’s why it was Charles fault for Orson needing and getting a feeding tube.

My heart ached for the conclusions that he had drawn, had been blaming himself for, and had been carrying around with him. We immediately talked more about the facts behind Orson’s feeding tube, why he got it, etc so that Charles could understand better that it was absolutely in no way his fault.
That’s when the magnifying glass appeared and I recognized my own guilt, similar to Charles’ that the g-tube for Orson was my fault. It was pretty shocking to me to realize that Charles at age 6 would blame himself for his brother’s physical trial that he had no control of, but I was doing it too – not blaming Charles of course but myself.

 Thinking of Charles and my similar feelings towards this peculiar, foreign, and challenging part of Orson’s life I wondered why Charles and I searched for who was to blame for it, and found that we thought it was ourselves. I realized that these were dark thoughts, not thoughts and feelings of lifting and love that would come from our Heavenly Father, but dark thoughts meant to stop us from feeling joy and having the ability to easily move forward and work. Hugh W. Pinnock in 1989 said, “But to judge, blame, and not forgive always intensifies the problem. It pushes healing further into the future. It is not responsible.”
We needed to focus on being responsible with our thoughts, not going on a blame hunt then wallowing in our supposed findings. We, Charles and I, and especially me as the grown up mother need to ask more fervently for comfort, peace, and help from Heavenly Father to not dwell on blame, guilt, and the darkness in my heart that comes from those feelings for something that I know I wasn’t ultimately responsible for. The g-tube is part of Orson’s life for a while we need to work with it, help him protect it, care for it, and use it for what it can ultimately do, which is greatly improve his health now and long term. I need to look to the light that comes from the Atonement of Jesus Christ and the endless ways that it can start healing now, and not push it further into the future.

I am grateful as a child myself to a Father in Heaven who allows me to learn and grow and use what He gave me through the atonement of His son and my brother Jesus Christ. I am also extremely appreciative to see love through my children’s eyes.



Sunday, June 7, 2015

Start of Summer : Pre Baby Wait

6th birthday. Floating Balloons. Water N’ Ice Snow Cones. Swimming. Painting Walls. Wave Pool. Button Buddies. Pool Noodle Experiment. Cutting socks. Catching Barf. Summer Movies. No cavities. Silver Nitrate. Dinosaur Museum. Gravity Check. Alaskan Cousins. Cassette Players. 3 Hoses 1 Backyard. Eagles Nest. Homemade Ice Cream. Friends. Farm Fresh Chicken Eggs. Read Every Day Challenge. Grandma’s House.
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We have been able to stay happy and busy while we wait for our new sister. She puts on a show at least once daily when she is moving so much that the kids remain fascinated with her and she isn't even here yet.
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I heard about them many times, but due to some concern with the healing of his g-tube site I finally took a nurses recommendation to use "Button Buddies" for Orson's button and made some. We had been taping him up daily with gauze and paper tape and his skin was so irritated that these little button buddies have been a big relief to him. It was a really fun project and one that I hope I can use to make ample to share with others in a coming day. Button buddies are basically a washable circle shaped pad that can be washed and re-used that go around Orson's button and hook together with a snap. They are made from three layers of fabric, cotton sandwiched between two pieces of flannel, and are supposed to wick away any moisture that comes from the button and keep the button secure. The dryer it is and the less is moves the cleaner it heals. I read online of several people doing them for Eagle projects and YW projects to donate to hospitals, a really beneficial service as far as I am concerned. A neat blog called "Hopeful Threads" taught me how to do them. I have big plans for holiday themed button buddies, its going to be big.  
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We have tried a couple of experiments with the tubing at night to prevent it from wrapping around his waist and neck. I read online about threading the tubes through a cut sock on his leg and then taping the tubing to his underwear as well. That seems to help a lot. The GI doctor last week recommended we use a pool noodle cut into a foot long piece to thread his tubing through and said a lot of other families have had success with that in preventing tangles and wrapping at night. So hope has been found!
       
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Me and the kids went to my Mom's house last week and she had recently unearthed a box of cassette players/recorders that my Dad had stashed many years ago. Frank had some old cassettes still at the house so the kids think they are ultra cool listening to their cassette players. One cassette has a lot of Ozzy Osborne, but they are his softer songs so its pretty funny watching them jam out to Ozzy. I am a fan of "Old LA Tonight."
 
My Mom is magical as I have previously stated. Another layer of her magic is her backyard. Its amazing. She is a talented gardener and her yard is filled with beauty but still very playable for the kids. She is so cool in fact that she has three hoses in her backyard. That means one hose for each kid. Grandma's backyard hose parties are one of the kids favorite summer activities.
 
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Some awesome blessings that happened last week. The kids went to the dentist for their summer teeth cleaning and NO ONE HAD ANY CAVITIES! It was very exciting! We will be sending the Easter bunny an extra thank you note for the electric Star War's toothbrushes. Also one night I was up with Orson after he had finished his feed for the night. When he finished in the bathroom I had a prompting to take the trashcan into his bedroom with me from the bathroom. About a minute later he started to throw up. We caught every single drop in the garbage can! It was an incredible blessing to NOT have to clean it up off the bedding, rug, etc. Woo hoo and phew!
 
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The family was very pleased to be able to spend time with our family that lives in Alaska. We miss them so much and tried to squeeze in as many fun memories as we could with them while they were here. Including but not limited to; amazing food, FHE, lots of treats, playing dominoes, Picture-eka, Borax goo, gymnastic ring tricks, play house fun, the wave pool, Star Wars, slumber parties, hair cuts, and more!
 
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Orson had his first adventure with silver nitrate sticks and their use for helping to properly heal his button site and stop the granulation tissue. The GI doctor did it the first time (a light treatment) and the surgeon will do it next week (a much heavier treatment), then its Mom and Dad's turn to learn how to do it at home (yikes and whatever the opposite of woo hoo is, can be inserted here as well).  
 
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Our ward (neighborhood church) has given all of us the challenge to "RED - Read Every Day" this summer, and of course in hopes that it will give us all a boost to continue and/or better our current reading of The Book of Mormon. They made bookmarks with a calendar of the summer on it and the kids are really into it. I am proud of them for all being so diligent on their own to do it. Charles likes to get his done as soon as he wakes up. Orson sees him doing it and asks his brother to help him read his. Maelee sees the boys doing it and is reminded from their example to get her reading done as well. It is a neat blessing to see the power of Charles' example and the inspiration he provides to his siblings. I am grateful for The Book of Mormon and the increased spirit of peace it brings to our home as we take time to read it on our own and as a family.