The Blessings of an Anchor

 

My favorite scripture is Ether 12:4. I had a neat experience with it  a couple of years ago. I heard Frank read it aloud during family scripture study one night and it struck me that it was exactly my testimony. It reads:

“Wherefore, whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works, being led to glorify God.” - Ether 12:4

It explains faith in God in such a simple and perfect way. If you know there is a God because your heart and spirit remember and know Him, your Heavenly Father, then that sweet feeling and knowledge gives you HOPE! Your hope that naturally comes from your faith creates an anchor from your soul to God. That anchor holds you in place, guides your life, and keeps you working towards loving God back by doing good things.  

I think that many people that know us did not know about the Cystic Fibrosis in our family, or if they did really what it meant. That was perfectly fine with us, and really how we thought we wanted it. We never wanted anyone to stand out, or be felt sorry for, we still don’t want that. Everyone has challenges and trials in their life, we knew we were no exception.

But when I found out about Ruby I felt like I needed to write it down, how I was feeling, and our story. It was so cleansing for me. The process of putting things into words from our CF experiences over the past 8 years was a very sacred experience for me. I wasn’t sure how my husband would feel about it because the original “long story” I posted on our Crowdrise page was very open. I felt like I needed to be open to relay the true measure of the desire of my heart. I had Frank read the story expecting him to change it or change his mind about my idea of doing the Crowdrise page and our original fundraiser idea. He didn’t though. He told me that it sounded great and that I should go ahead and do it. That’s when I knew that Heavenly Father was softening both of our hearts to prepare us for the highly emotional months ahead.

Our testimony of Heavenly Father’s plan for all His children was already in place, but because we took the opportunity to share it and the struggles that come with remembering it when faced with Earthly trials - and HOW we remember it, our testimony is stronger. Our anchor, which is our faith and hope in God, is such a blessing. It has been a tremendous experience through all of this sharing so see all the other anchors of others. We are beside ourselves with gratitude for the blessings we are receiving, and coming into the last 24 hours of preparing for this event!  

The Women Behind the Dolls

So this may have not been the "best" of the good, better, best ways to spend an hour of my evening - but I was so excited I had to play with Photogrid. A man in a Florida State shirt, who will remain nameless, helped me to finish 20 more dolls for this Saturday's event, bringing the total to 40! He traced 44 dolly arms, and 22 dolly heads, then stuffed them all for me so I could work on the other stages of the process. True love.

 

Without further delay here are the women behind the dolls. Or the dolls behind the women I guess...

 

 

 

 

 

 

My Child's Faith : She Knew the Plan

      As a parent watching their child grown, learn, and start to ask a million questions there are certain conversations that you start to prepare for, and some you never can. When you live with a chronic disease in your family “the talk” about what that can mean is definitely one you try to be ready for.

Because we wanted to make sure that our daughter knew that no one really has a perfect body and everyone has physical challenges that they overcome and live with we try to talk about those things as often as we get a chance, even when she was very little. The chances came up to talk about physical hardships others face with an elderly neighbor who has had several strokes and the effects of that on her body, a close family member who we love who has lost a lot of their hearing, etc. We would talk about these things in hopes of showing a pattern that she would recognize in her own physical challenges, that these challenges are given to us not because Father in Heaven loves the person who has them less than another, but because it is part of how He helps them to be spiritually stronger and others to be stronger. Then the best part, the most exciting thing we hoped she would remember from these conversations was that these imperfect bodies are our earthly bodies. That through Christ’s resurrection and atonement for the world we would all one day be resurrected like our Savior and have a perfect body without these physical troubles.

      With Maelee it happened much earlier than we thought it would. She was 4 years old and I was very pregnant with her 2^nd brother. She was having a hard week and very fed up with me asking my favorite questions. “Did you take your enzymes?” “Will you please do your spacer?” “Can you please put your vest on?” One day at lunch she threw her enzymes across the kitchen table and this is our conversation that I loved so much I wrote it in my journal.

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Maelee : “I wish I didn’t have Cystic Fibrosis and didn’t have to take enzymes and do my spacer and my vest.”

(me thinking this is my big chance)

Mom : “Maelee who gave you your body?”

Maelee : Heavenly Father

Mom : “Does Heavenly Father love you?”

Maelee : Yes

Mom : Do you think He still loves you even though He gave you a body with Cystic Fibrosis?

Maelee : Yes

Mom : Why do you think he gave you a body with Cystic Fibrosis?

Maelee : To test me.

Mom : That’s right so you could learn from it, and I learn from it and so does Dad and Charlie. I know that things you have to do for your CF aren’t fun and bother you sometimes but do you think you can keep trying hard to make the best of what you’ve got?

Maelee : Yes

Mom : Why?

Maelee : Because I am strong.

Mom : And because you’re a daughter of……?

Maelee : GOD!

Mom : That’s right you are strong and you’re a daughter of God

(now I am getting emotional)

Maelee : Mom I have another question.

Mom : OK what is it?

Maelee : Are wolves bad?

Maelee : And what do fish eat?

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       Her faith was in place and growing, but thank heavens she was still just a regular four year old with lots of questions about her life, wolves, and fish. There has been already and will be more conversations like this to come, but we know the best part so we are ready.

Meet the Adams Family : The Short Story

 

Cystic Fibrosis.

13 years ago, those words meant nothing to me. Now they influence almost every decision I make.

 

Before We Knew

 

In 2002, I fell in love with Frank and we got married. Five years later we were preparing to bring our first baby – a beautiful girl – home from the hospital. Our doctor noticed an issue with her stomach and she stayed in the NICU for a week to clear it up. A blood test was taken to rule out a long list of potential causes for the stomach issue. Bottom of the list and least likely (according to our doctor) was Cystic Fibrosis. Neither Frank nor I had any relatives with Cystic Fibrosis, so we didn’t think much of it. However, when the results came back her diagnosis was indeed CF.

 

Unknowingly, both Frank and I were carriers of a genetic mutation called DF508. 1 in 30 Caucasians are carriers of this defect and if two carriers have children, there’s a 25% chance that their children will have two copies of this genetic defect and be diagnosed with Cystic Fibrosis.

 

Initially, we were told our daughter had a terrible disease and she would die young. However, after working with the angels at Phoenix Children’s Hospital Cystic Fibrosis Clinic, we learned what CF means and how to help our daughter not just survive, but grow, learn and thrive.

 

Learning About Cystic Fibrosis

 

In its simplest terms, the salt and water in a body with CF don’t work together like they should. The incompatibility of salt and water in the cells causes thick mucus to form and coat the organs of the body – typically the lungs and digestive system. Although a person with Cystic Fibrosis has a normal immune system, the bacteria that gets stuck in their lungs when they get sick has a very hard time leaving.

 

Additionally, people with Cystic Fibrosis are not able to utilize the natural release of their own enzymes from their pancreas because the pancreas is blocked by mucus. This requires that they take prescription enzymes with all food to try to mimic the natural enzymes needed for digestion and nutrient absorption. If these enzymes are not taken with all food the result is no digestion, no growth and no weight gain.

 

Continuing to Live

 

Despite the difficulties, our daughter’s medical treatments soon become routine and we were blessed to give her a baby brother two years later. He had only one copy of DF508 – so he is only a carrier like ourselves. Two years after his birth, we were expecting our third child, another boy. Prior to his birth he was diagnosed with CF. Now four years later, we are expecting our fourth child. A little girl due in June. Baby Ruby has also been diagnosed with CF.

 

Many people ask how we could continue having children when we knew there was a 25% chance they could have CF. Why would we not seek adoption or fostering a child in need. Didn’t we feel guilty?

 

Yes, feelings of guilt and confusion the past seven years have at times been overpowering. We have wrestled with what was the right decision. In the end, adoption was not the right avenue for our family at this time.

 

Through our darkest times, the overwhelming anxiety about the trials and struggles our children would face and the crushing guilt as we expanded our family, Frank and I have tried to focus on three things –  hope, our faith and the love we can share with our children to give them the courage to face every challenge that will come. We know that Cystic Fibrosis is not forever, but our family is!

 

 

The Cringe of Comparison

 

As ignorant as this sounds, Frank and my attitude about CF is to try not to learn too much out of what our own kids are dealing with currently. You know, keep the blinders on a little bit. Clearly it is silly to pretend that more couldn’t happen, but since our thoughts already wander to the extreme of the disease more often than we like to admit, it’s easier to control those thoughts when we don’t go hunting for extra amount of Cystic Fibrosis information that we currently don’t need to apply. The thought of CFRD (Cystic Fibrosis Related Diabetes), organ transplants (he have heard lots of lung transplant stories but also have heard liver and kidney transplant stories with CF as well), and then the dreaded Burkholderia cepacia (I know I diligently try to avoid any more than what I already know about it), have the same effect as the one scary movie I have ever sat through – literally haunting (12 years and I can’t get this awful movie out of my head seriously).

Knowing our own attitude about in essence keeping to ourselves a bit about our little regimen we duly note that potentially other CF families feel the same way. When you do get into who does what and how long they have been doing it with meds and such it creates new thoughts. Why is my kid on more/less meds than theirs, I wonder if we will have to add that med, are we doing something wrong, etc?

But it is also interesting to note that each step, each med is added gradually. I worry about how we will remember to add another in, stress out about trying to get it done, feel really bad for missing it some days, then finally one day it’s totally part of the routine and fits right in. All of that said here is Maelee and Orson’s morning routine. This all happens before 7:30 am on school days. Sprinkle in the kids eating a good amount of something healthy-ish for breakfast and I feel pretty accomplished when we leave for school.     

Walking Alone to the Nurses Office

First Day of Kindergarten

 

We experienced a common parenting panic attack when we sent our first daughter Maelee to school. We were concerned about all the regular things that parents worry about. Will she be safe? Will she behave for her teacher? Will she make friends? Will she learn all she needs to keep up with the kids in her grade?  

But we also worried about increased germ exposure. Exposure we couldn’t control really at all. Would she start school and then have her first throat culture at the CF clinic after and it contain a dozen new strains of things we needed to treat with new meds? Was she going to get really sick (something that every cough we heard her make while she played during the day or slept at night already brought into our heads anyway)? How would she do with taking her enzymes before she ate snacks and lunch? Would the teacher keep them in her desk and dispense them to her, or would she need to go to the nurse every time? Would she be able to use the restroom when she needed to, often frequently and urgently? Could she reasonably take care of herself without us?

Before she even had her first day of Kindergarten many of these questions were answered. One that as her parents we thought was a huge deal was her having to walk to the nurse every day for snack and for lunch time eating before she could participate in these things. It seemed like it would feel completely isolating. We worried it would be a sad time of day for her, a multiple time a day reminder of how she was different from all the other kids in her class.

We also understood that this was an unavoidable part of her (and any other kid with a daytime med requirement) public education. It would not be safe for her medication to be anywhere but the carefully charted and monitored nurses office. We did all we could to keep a positive attitude about it and check it off as something we needed to help her feel as normal about as we could.   

When school started we began to see Heavenly Father’s hand in this part of Maelee’s life. The women in the nurses office quickly proved to be one of the highlights of Maelee’s day. Cheerful. Kind. Positive women.  The kind of people who anyone would make an effort to stop by and see, only Maelee didn’t have to make an extra effort to see them, she got a specially scheduled time of day where she was guaranteed to. And if for some rare reason she didn’t get in there when she should have, they patiently search her out and help her with her meds. For 3 years there have been a few different faces in the nurses office, one constant, all incredibly awesome.

As her mother I remain to be so grateful to these women who do for her at school what I cannot be there to do, make her feel loved, important, and worth helping. Plus it’s not just my daughter that these women help. Of course every kid eventually ends up at the nurse for all kinds of random reasons, but there is a whole group of kids like my daughter who have daily med routines that cannot be done only at home and require the nurses specialized aid and ability. I have had the chance to see a handful of the other kids with these med routines in the nurses office as I have visited Maelee’s school. The nurses role in their day and the boost of love and care that these women give these kids who need to feel normal when doing things no other classmate is doing is constant.

 So the answer to one of our parenting worries about Maelee making friends at school is “yes” she did! We just didn’t realize that one of her best friends would be the school nurse.

 

Cheering for the Poop Brigade

 

My Mom is a huge parade fan. So was my grandma. When my grandpa retired from working for the Arizona Highway Department they paid for all their kids and grandkids to go to the Rose Bowl Parade and Disneyland. It was so fun and my first memory of cheering for the poop brigade.

You know the ones, the group of people who follow behind the horses with a trashcan on wheels and big snow shovels and brooms. It is an absolutely necessary job, but maybe not one you would pick if you were picking from all the parade jobs. Perhaps you would want to ride the horse and wave to the crowd. But someone has to pick up the poop so that no one else steps in, well you know.

My family grew up in Tempe, Arizona a city that hosts the Fiesta Bowl Parade. My family attended every year while we were growing up. My husband is from Show Low so we have had the chance to attend their magical 4^th of July parade, and even got to see parades in other beautiful Arizona towns such as Eager and St. Johns. Each parade has horses, each parade has a poop brigade.

Sometimes the poop brigade has hilarious outfits on. Tutu’s, clown noses, etc. Other times it is just a group of people who are wearing regular clothes doing their best to shovel the poop. It does seem though that the ones who dress up have a little more fun. They add to the parade, making their job as fun to watch as the people riding the horses and waiving.

Keeping a good attitude about the things in our life that can be compared to shoveling poop is a very hard thing to do. Choosing to wake up and put on your tutu and clown nose can sound harder and require more effort than just showing up for the parade and not making eye contact with anyone while you do that job that has to be done (good for you for showing up for the parade anyway though and not staying in bed).

Having a daily ongoing relationship with Heavenly Father through prayer and through the peace and comfort that can come through reading the scriptures and words of the Prophets has the power of tipping the scale to the tutu and clown nose outfit choice when we have to make it each morning.

We recently met with the surgeon to discuss Orson’s new button (gastrostomy tube) and what kind of care it requires. He is going to have to learn how to shovel some poop with this new part of his life. We are blessed though to know that he will have the help he needs because we know about prayer, and we know that the words of ancient prophets and the words of today’s prophet (General Conference is this weekend!) have the ability to lift our souls to the levels they need to be at to put on our tutu and clown nose and have a good attitude about the poop we shovel. Hooray for the poop brigade! Keep up the good work guys!

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Here is a link to a video about the 185th Annual General Conference of the Church of Jesus Christ of Latter Day Saints happening this weekend April 4 & 5 where you can hear the council of today's prophet Thomas S. Monson.

https://www.lds.org/church/events/april-2015-general-conference?lang=eng