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, October 29, 2017

You Did It Again Fry Sauce And I Love You For It


One of my favorite roles to play is daughter. I love hanging out with my mom and feel extremely fortunate to have her in close proximity and in my life. I try to take lots of pictures with her and make lots of memories. I am and always have been so proud to be Sharon’s Youngest Daughter. Last month I was able to be with her in the super exciting setting of her formative years home town of St. George, Utah.

2nd and 3rd Generation Frostop lovers!
Having never driven to St. George as an adult I was really surprised at how close it is to the Arizona border. I knew it was located at the bottom of Utah but seriously its so stinking close to being in Arizona. Not sure why that interested me so much but it really did. Especially when we went to Glitter Mountain and while taking that dirt road we literally weaved in and out and between and back again from Arizona to Utah.



This is it! We are at the magical one and only Jacob Lake!
All my memories of being in St. George and getting to St. George as a kid orbit around two locations, Jacob Lake and Larsen’s Frostop. We would be devastated if it was winter and Jacob Lake was closed when we happened to be driving to St. George to visit family as a kid. So when we pulled in to the tiny parking lot on top of the mountain I was practically floating inside with my four kids, niece and Mom in tow. I wanted my kids to be as excited as I was to be there. Did they know how lucky they were? Of course not. But I tried not to let the five cranky kids in the car for too long energy zap my joy at being back at this magical location once again. My Mom and I basked in the glow of the rustic lodge diner (like for reals rustic hasn’t been “updated” or “renovated” since perhaps the 1950’s not fake rustic like Claim Jumper’s) while sipping a milkshake and eating cookies and trying to wrangle the kids who were definitely not in the same joyful planet we were on. One day I dream of walking in with appreciative older and wise children at my side (and my husband he will be there too) who say something like, “whoa Mom you were right this place is indescribably awesome to me. I can’t even express how happy I am to be here right now with you.” Then as I wipe a tear of joy myself I’ll order us a round of shakes and grilled cheese sandwiches which we will eat in witty conversation sitting in the swivel seats at the bar. They’ll suggest a selfie photoshoot which I will of course agree with. Then for the next week we will all find ourselves saying things like, “remember Jacob Lake, oh man that was the best.” In the mean time it is what it is so we kept on driving.



Then the next day after we enjoyed a superbly put on main street America parade we were able to go to Larsen’s Frostop. Really as a kid I ordered the same thing everywhere I went so I hate to admit how excited I was to have a milkshake at Larsen’s after having one the afternoon before at Jacob Lake but I cannot tell a lie (especially about something as serious as a milkshake and fry sauce) I was giddy to eat at Larsen’s. I just remembered the many times I was there with my family as a kid. My sister’s walking me down the skinny little white bricked hallway to the bathroom. The colors of the tables and walls. Everything was just how it had been when I was there with my own Dad and Mom and three brothers and two sisters and it was just a perfect memory recreation for me. I remembered it all and those hot French fries in fry sauce took me back to sitting across the table from my Dad and Mom when I was fancy free and living under a magically provided for roof. Can anything be wrong with the world when your dipping fry’s in fry sauce in Utah? No. Nope. It cannot.

So I’m writing tonight instead of sleeping because I haven’t written in a while and I have been wanting to talk about this fun weekend for a while. And I wanted to do a public service announcement for spending time with people that you love and making memories with the people you love that you’ll want to re-create in a couple of years. Because for me and for this time it just made the memories and time spent so full of love for family and for life. Long live milkshakes and fry sauce.

We had to stop for pics at the stunning St. George Temple.


We love to see the temple and the Christus statue in the visitors center!


My 8 year old son was very pleased that I asked him to take this
ridiculous excited picture of me. Thank you my son for being willing to let me make a fool of myself and to document it for me. I will keep asking you to do this for me over the years. Get used to it buddy.

This is a shot from the breathtaking scene at Glitter Mountain, which by the way
is technically in Arizona the great 48th state.
I tried to encourage the stanger taking this picture to get the Jacob Lake sign in it, but alas to no avail.

One of the happiest views on earth. Bakery displays. Oh my heart.

1 comment:

  1. Hi Kamarah,

    My name is Anuj Agarwal. I'm Founder of Feedspot.

    I would like to personally congratulate you as your blog CF Is Not Forever has been selected by our panelist as one of the Top 75 Cystic Fibrosis Blogs on the web.

    https://blog.feedspot.com/cystic_fibrosis_blogs/

    I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 75 Cystic Fibrosis Blogs on the internet and I’m honored to have you as part of this!

    Also, you have the honor of displaying the badge on your blog.

    Best,
    Anuj

    ReplyDelete