Friday, April 28, 2017

When The Fairy Godmother Came To The Gas Station

Two years ago today we were feeling very loaded down and heavy as we pulled into the gas station. We were getting ready to drive to the hospital for Orson's g-tube surgery. He had been fasting since the night before and while it was fun at first to "get the day off from eating breakfast," he was realizing it only meant he was hungry. Trying to convince a three year old that being hungry is necessary was proving difficult.

I was 7 months pregnant with my 4th child and I was trying to hold it together as much as Orson was. Daddy the gas pumper was doing his best to be cheery too. We were each existing moment to moment assuring each other things were GREAT when really all of us were on the edge of breaking down. Lot of emotions, guilt at feeling like failures at feeding our kid properly, guilt that he would have a piece of plastic installed to fix our failure and it would scar him for earth, etc. Then what may as well have been a golden carriage pulled up on the other side of our gas pump.

Out stepped Orson’s fairy godmother disguised as one of our neighbors and friend. She gathered up her sparkling flowing gown and before she could even start singing she knew just what Orson would need that day. With a wave of her wand she assured us she would make this day better.

A couple of hours later after the surgery was over and the breakdowns had all happened there it was. A stuffed to the brim brown paper sack that had been delivered to our house from Orson’s Fairy Godmother and then brought to the hospital by Orson’s Fairy Grandmother (BeBe). Inside was a note explaining that the next couple of days was going to be rough but when things got tough for Orson he could pull something out of the bag to help distract him and cheer him up. Of course there was plenty to share with the older brother and sister who would be watching and hoping for a piece of that prize in the sack as well. Heavenly Father knew that we needed Orson’s Fairy Godmother at the gas station that morning! He sent her to help us just when we needed her magic.

This memory whopped me in the head (perhaps reverberations of the magic wand waived there for us years before) this morning as I put my car in park in front of the same gas pump two years later. We’ve learned so much about Orson’s g-tube in these past two years! His litter sister even thinks she has one and tries to squirt syringes into her stomach every night when we hook Orson up. He was about 32 pounds when he started and if all goes as planned next week when we go in to weigh in on the scales that count at the hospital he should be about 44 pounds. I’m pretty sure that fireworks and a marching band will begin to play if that’s the case. He has gone from the 13th percentile on the CF growth chart to (since we last checked on February 13th clinic visit) the 47th percentile (almost out of the DANGER zone, AKA below 50th percentile). I am definitely grateful he has his g-tube and that he has the long term benefits of growing properly now to benefit the health of his lungs long term.  

Sunday, April 23, 2017

A Great Trip That Ended With a Gunman, a Dripping Baby, and a Dozen Donuts

We had just gotten back from a trip. I helped my husband carry all of our luggage into the house for it to then explode along with the kids two feet from the front door. I got the baby straight upstairs for a bath.

While I’m running the water for the bath and can hear nothing else but water filling a bathtub there are gunshots outside. Frank hears the shots fired and his natural reaction is to walk outside. Picturing our roles reversed I would have double locked the doors and have been moving furniture in front of the door for good measure, but chalk it up to male vs. female emergency response triggers I guess. ANYWAY, so Frank is a walking back into the house and all of a sudden a barefoot man comes running at him yelling. Frank moves back quickly and inside the metal security screen door while the man is yelling at Frank to help him.

Gunman: “Help me, help me, they shot my friend and they are after me! Let me in so I can hide!”

Frank: “What? I can’t help you! You might have a gun!?!”

Gunman: “I do have a gun!” (Gunman then holds up his pistol to show Frank). “I’ll leave the gun outside!” (Gunman then tosses gun into the flowerpot by our front door). “Please, please, let me in. I think they shot my friend! I think my friend is dead!”

Frank: “OK but we are calling the police.”

Gunman: “Yes, yes, please call the police!”

So back upstairs I have not finished running the water yet but my oldest kid comes in and screams at me that “Dad just let a guy with a gun in our house Mom!” Which of course causes me to triple take my listening comprehension skills. My quick breath panic mode takes over as I carry the dripping baby to the top of the stairs to find my two sons huddled together noticeably shaking.

My ears are straining to hear what Frank and the definite voice of a stranger are saying to each other. Are they angry? Are they struggling? Should I lock the kids in my bedroom and use the landline to call the cops? Is my portable house phone charged? WHO AM I KIDDING ITS NEVER CHARGED! WHAT AM I GOING TO DO? WHERE DID I PUT MY CELL PHONE? IS IT DOWNSTAIRS WITH THE GUY WITH A GUN?  Then I have two seconds of super slow motion thinking and all my questions are answered, not by Frank but by a quiet calm to my heart and clear understanding.

No, Frank is not arguing with the stranger. No, we are not in danger. Frank is helping someone who needed help. We are safe. I knew. I was given a reassurance by the Comforter just as Frank was when he let that man in our house (we would soon discuss together later that night) that we were in no danger.

My next step was to make sure there wasn’t anything I needed to do to help Frank and then to get my exhausted children to bed. I went downstairs to get the babies bottle ready for her. I walked passed the pacing frantic man who said, “I’m really sorry about this mam.” I wasn’t sure what to say back so I asked him if he wanted water or a donut (of course we had donuts we just got back from a trip of course we picked up a dozen donuts on the way home from the airport – what kind of parents do you think we are? The kind who don’t feed their kids donuts – WRONG).

The stranger assured me he didn’t want either of those things right before Frank passed him the phone to begin talking to the police.

I went back upstairs to find all three of my big kids (the baby was in my arms still) huddled on the stairs with huge eyes and tears streaming. I guaranteed them that everything was going to be fine and that they needed to proceed getting ready for bed like normal. They then assured me that there was no way that they would take a shower without me standing in the bathroom with them while there was some nut downstairs with a gun by the front door. This seemed a fair enough request so I sat in the doorway of the bathroom feeding the baby her bottle while each of my three kids progressively took showers.

By the time they were done so was the phone call with the police. Also the stranger with a gun by the front door had finished his phone call on Frank’s phone and made several calls on his own phone then stood up and announced that he guessed “the coast is clear.” He began to walk away from our house and then turned back and said, “woops almost forgot this” and reached down into the flower pot to get his gun.

Frank then utilized all the locking apparatuses on our doors and joined us upstairs to get the kids all bedded and calmed down from the crazy turn of end-of-travel events.

As Frank and I went over and over the nights details with each other that night and since, we both keep coming back to the fact that we are so grateful for the Holy Ghost that helped both of us know what to do in such chaotic moments. “As we strive to stay on the path that leads to eternal life, the Holy Ghost can guide us in our decisions and protect us from physical and spiritual danger” – (link to quote and more explanation of the Holy Ghost here). I’m grateful for the Gift of the Holy Ghost.

We haven’t yet taken the advice of some friends which is for me to make a decorative sign to hang above the flower pot which reads, “drop firearms here,” but maybe we will eventually.  

Monday, April 17, 2017

I'd Recognize That Mustache Anywhere

Our first Great Strides Team MAMA Lou
walk 2008, the whole team!
Before our chapter of the Cystic Fibrosis Foundation changed the Cystic Fibrosis Great Strides walk to Sunday we were able to participate and did so in 2008 and 2009. It was our first experience besides visiting the CF clinic in the hospital in regards to guaranteed being around others with Cystic Fibrosis.

Baby Maelee with Frank Daddy before the
Great Strides walk in 2009
When your first diagnosed one of the bullet points in the “so your kid has CF” speech is a pretty serious run down on why your CF kid can’t EVER EVER EVER be around any other person with CF. It leaves you feeling sad and kind of like other CF people are similar to the boogie man. RUN AWAY and DON’T TURN BACK! Of course the precaution is 100% health related, but it feels really strange to be warned not be around people who are your people.

So for the two years we were able to walk in the Great Strides walk they let all the participants with CF know that to allow the precaution to stay in place, avoiding others with CF, that the CF Foundation would provide camouflage visors for people with CF to wear. This would allow the CF human beings to avoid each other with discretion. 

Me in 2009 pregnant with Charles around walk time
notice huge pregnant belly below in group shot is partially hidden
from view.
In 2008 and 2009 our CF child was a tiny kid so there was no way she would keep her visor on. The first year I think I tried to somehow attach the camo visor to her stroller but it was a fail. So I spent the whole time at both walks darting my eyes around for other camouflage visor wearers ready at any second to scoop up my daughter and go running far away so we wouldn’t get their boogie man germs (I definitely know other people with CF aren’t the boogie man so hopefully none of my CF friends who read this take offense, I’m just writing how it felt to me in early diagnosis - not the medical science behind bacterial colonization in the airways).

This is our 2009 Team MAMA Lou Great Strides crew.
Notice my baby Chuck still in my belly. Almost done

Anyway fast forward about 9 years to last weeks baseball game for my son Chuck, our only non CF kid. I’m watching his game with my baby Ruby in the grass behind the dugout. I look over and see a face of a woman I recognize as another CF mom that I know from social media only. We share similar friends and follow each other. Anyway I pull up her account really quick to make sure its her then I come up with my plan on how to introduce myself without her feeling like I did at the Great Strides walk about the other camo visor wearers.

I totally play it cool the whole first inning and then when my son is up to bat I casually stand up and cheer for him then I’m like, “Oh hi social media CF mom friend its me, Kamarah.” We exchange pleasantries and I sit there for the rest of the game thinking how small of a world it is, "after all" (so they say).

Then as I take a backward glance at the sweet couple sitting behind us in the grass behind the dugout I notice a familiar mustache. My cosmetologist heart never forgets a mustache. I remember that I met that mustache and his wife two years ago at our fundraising event. The couple had approached me and we had visited about how they had two children with CF but they had passed away. It was a special moment from two years ago that I hadn’t forgotten.

Being my father’s daughter I could NOT pass up an opportunity to tell someone I remembered who they were, so as we were packing up I spoke to the woman. As unweirdly as I could I asked her if she had two children with CF. She said she did and I told her I recognized her husbands mustache from an event two years agoI'd when we had met. She says “people always recognize his mustache.” In my humble opinion, it’s a spectacular mustache and I think it’s pretty cool that people know him by it. Again we exchanged pleasantries and left for home.

I have smiled about it all week. How three CF families end up on the same 10x10 square of grass watching a coach pitch baseball game on a random Thursday night when statistics say there are only 30,000 CF people in all of the USA’s 318 million is beyond me. But even though we aren’t supposed to be together it was nice to land there anyway even if it was just for the unspoken enjoyment of myself at the time. Cheers to chance encounters with the boogie man.

PS – For anyone who is concerned my CF baby and the other CF bigger girl did not get too close, although Ruby was abnormally friendly that night. She must have sensed their sisterhood, I’d like to think so anyway.

This is Ruby last week at the baseball game.

Monday, April 10, 2017

Heavenly Arranged Friendships (Even With Orange-ish Hair)

I wasn’t even born when my mom developed her close friendship to Kathy. But they grew up together as Mom’s with children of similar ages attending church in the same building. Working alongside each other while at the same time realizing they made each other laugh the hardest. It was a magical friendship made strong with enduring trials together and happy memories together too. But what made her really legendary in my eyes was their farewell story of sharing a neighborhood and a church building.

They were both expecting babies at the same time. My mom already had two girls and a boy so she assumed she would be carrying a boy (in the 80’s before common gender ultra sounds). Kathy also was pregnant and assumed she was carrying a boy. They decided that since Kathy was moving out of state that they would cement their friendship in naming their coming baby’s the same name. Cameron.

It turns out I was a girl so my Dad switched some spelling around and added several A’s and a K and WA-LA I had in their eyes the more feminine “Kamarah” and Kathy did name her son “Cameron.” So they still got their bond just a bit different than planned.

I remember Kathy’s visits to our house over the years with great anticipation. She may not have seen my Mom in a year or two but when they got together a natural and easy friendship was theirs waiting every time. We got to skip school to go to the zoo with “Aunt Kathy” and her kids. We went to movies on holidays together. I have a very clear memory of seeing the Home Alone movies 1 and 2 with Kathy and her family during Christmas time in theatres.

To see my Mom so happy with her made me happy and made me want to find my own Kathy someday.

Unbeknownst to me my Kathy knocked on my door one day while I was “big with child” about 10 years ago to the day. She invited me to a girl’s night and the rest is history filled with kid hang outs, double dates, pool days, cheap kid movies in the summer, grilled cheese sandwiches, bean crisps, and our most anticipated event over the years Black Friday shopping. Of course we have also shared the emotional and physical trials as life as well.

Heavenly Father knows just who we need in our lives and I’m so happy I found me a Kathy. Last week I was trying to decide whether or not to attend an out of state funeral for my Dad’s biological mother. I had only met her one time so I felt silly wanting to go, but I also knew that if my Dad were still alive I would be going with him to the funeral. The pull was strong. I knew it would be a challenge to leave in the middle of the week and a LOT crazy to fly in and out in one day. When I let my friend know what I was mulling over she told me that she had no plans for the day of the funeral in question and that she would love to go with me! My jaw dropped! I could not believe it! So we are off this week for a crazy same day in same day out flight to attend a funeral together.
The first pumpkin rolling challenge. Back when I had blondish hair with a lovely orange tint. I've always liked to keep it classy. Don't want anyone to mistake me for perfect you know.  
The second pumpkin rolling challenge with "my Kathy" my hair was not orange anymore so hooray!

These two women got me through so much! We aren't neighbors anymore but what we had when we had it was heavenly.

I have a strong group of fantastic friends who inspire, motivate, and cheer me up! I thank heaven for being given female friends who understand and accept me. I’m grateful for all the Kathy’s in my life.

Sunday, April 2, 2017

Awkward Laxative Dialouge With A Sad Pharmacy Cashier

A couple of weeks ago I was at Walgreens buying 4 of the largest bottles of MiraLAX they sell. Well I guess it was the Walgreens brand of MiraLAX. Because forget about shoe sales I go nutty for a good price on Polyethylene Glycol 3350. Can I get a “what what” for osmotic laxatives people?

Back to my story, I’ve got a wheelbarrow full “Smooth LAX”, and a side order of stimulant laxatives and I’m checking out at the register. Since my Walgreens doesn’t have self check out I face one of two outcomes.

First and most desirable outcome, my cashier makes a mental decision not to say anything about my large quantity of laxative products since they see people buying all kinds of freaky things at Walgreens. Or the second outcome is, I have a cashier whose feeling chatty and we have an awkward conversation.

Lucky me door number two opens when the cashier says, “Is all of this for you? Or are you taking care of someone?”

He’s a sweet looking grandpa guy and not creepy (first impressions I could be way off on this) so I say as simple of an answer as possible. “It’s for my daughter.” Clearly I know it isn’t any of his business but he seemed sad already and worried about me a little so I didn’t want to be rude and tell him to “talk to the hand.”

“Is she sick?” He says. Well, hmmm. “Born that way,” would potentially have been a fine answer. I suppose I could have gone into the details of the Cystic Fibrosis and the complexities it plays on the digestive system but I went with. “Her pancreas doesn’t work.” Just to keep it simple and move on to my seatbelt buckling and driving home.

He remained looking very sad (maybe there were other sad customer purchases that day too poor guy) and said, “how old is your daughter.” “Nine,” I said.

Now if I was wearing this outfit while also
buying an excessive amount of laxative products.
That would have been an even better story! But
this outfit is none of your business! If I
talk about laxatives on my blog I've got
to have some mystery.
Then he stopped to hand me my receipt and said, “I know I shouldn’t say this but that just doesn’t seem fair. That she would have to do this. She’s only nine. But that’s just me. Forget it. It just doesn’t seem fair.”

All I could think at the time to tell him was, “well she’s strong,” as I walked away with my laxative stock pile.

So now since I can prepare myself for future conversations with people who are worried about the fairness of a chronic illness and even saddened by it I can be ready.

I decided it would be best to keep it 140 characters or less. Twitter style, since I don’t want to have long conversations about my children’s health challenges with strangers, but I also don’t want them to think I dwell on it not being fair, because I don’t and I don’t want my kids to do that either.

My response will now be.

Their physical trials make my kids stronger. They are lifted up by God in all they have to do. They are not alone. The love of God is real.

If my count is right I even have one character to spare! So that is it sweet grandpa Walgreen’s cashier man. There you have it in 139 characters. Everybody has problems to solve, trials to overcome, poop happens (get it with the laxatives earlier in the story, ha ha ha) but our Maker didn’t leave us to fight through alone. He helps us through.
Me and my girls on a windy T-Ball night last week
. Girls I promise I will be willing
to buy you any seemingly embarrassing thing you'll
ever need!
Now if I could petition my Walgreens for a self check out that would be cool too.