The Summer of Learning to Live Again

The summer of our Learning to Live Again project was kicked off with a trip to Long Beach, California, for my birthday. We haven’t flown anywhere in about 2 years, not since Jenna has had a feeding tube. We weren’t really sure how traveling with all her meds and feeding tube accoutrements would go, but, in the spirit of Learning to Live Again, decided to give it a try. Also we were flying standby… All uncertainties aside, we got there without a hitch and it was totally worth it! Four days, 3 nights, staying on the Queen Mary and spending time on the beach every day, going on a boat tour and spending a day in the Long Beach Aquarium…

View from the Queen Mary deck

View from the Queen Mary deck





Best. Vacation. Ever!

The week after our son went to Camp Hobé, a camp for kids with cancer and their siblings, manned by volunteer doctors, nurses and just really great people. Awesome. Ryan hadn’t slept away from home for more than one night before, so we were all a little nervous about this, but he had a wonderful time and is already talking about going again next year. If you’re looking for a great cause to donate to, Camp Hobé is it!

Also about this time, Jenna had an MRI of her brain. During our vacation she was shaking, sometimes uncontrollably, and was so seemingly dizzy she would cling to us. At the time, since nothing else had changed, we decided to just wait it out. But when we got home and it continued, we called her doctors who recommended the MRI to check for active LCH in her brain or neurological damage from chemo. Over a week later we were finally able to get her in for the scan but by then she had basically returned to normal. Normal being random hand tremors and vertigo. The scan showed no abnormalities or LCH, whew, and now in hindsight we believe she was just afraid. She has led a very sheltered life so far, going mainly between our house, Grandma and Grandpa’s house and the hospital. I think the huge leap from this lifestyle to going on an airplane, in a taxi and buses and around tons of people in strange environments was too much for her. In spite of whatever was going on though, she did have fun.  = )

A week later my husband, who worked for one of the airlines, was unexpectedly let go. He hasn’t liked this job from the beginning and has kept it to keep Jenna insured. Not surprisingly, my initial reaction was to completely FREAK OUT! But, honestly, for many months I’ve been thinking that we all deserve to be happy, all of us. So on the flip side of freaking out, I was happy for him and relieved that he would be around more. Just like so many things in life, there are pluses and minuses to his not having this job…

Plus-I have help getting the kids to bed and with the nighttime routine with Jenna’s meds and feeds.

Minus-No steady paychecks (small as they were, they helped).

Plus-I have only had to cook dinner 4 times since then! (Double plus!)

Minus-We’ve had to find alternate insurance for ourselves, except for Jenna who is still covered by her secondary insurance.

Plus-My husband is happy.

Plus-I get to sew more.

Plus-We spend more time together…

Here’s what we’ve been up to…

• We rode horses and held baby animals at Arrowhead Stables, a HopeKids sponsored event (another charity worth sinking your donation dollars into!) Jenna hardly cracked a smile, but each time her ride was over, she wanted to ride again. Over and over and over.


• My husband and son have been hiking a lot together


• We’ve been walking a lot in the evenings and trying new trails in our area

• We’ve been swimming a lot and jumping on the trampoline at dusk (when I say a lot, it’s 3 or 4 times a month, which is a lot for us)

• We went to the 4th of July parade in our town (it was kind of a bust – our son is at that age where he doesn’t care anymore and Jenna isn’t quite old enough to get it – but we did score a ton of salt water taffy!)

• We went to a huge charity event at FantasyCon – WOW! – This was an event involving many other charities for children with life threatening diseases or disabilities, including HopeKids. We were a guest of Make-A-Wish at this event. So fun!!


• And we played with the solar oven we’ve had for years in our basement


In July Jenna had her first oncology follow-up and ultrasound. She got a big thumbs-up and “Great progress!” Hurray!

Somewhere between Jenna’s brain scan, freaking out about my husband losing his job, Jenna’s oncology follow-up, and feeling drained by the heat, I lost the momentum for our family project. In fact, I hardly thought about it at all. Mostly I was thinking about how we were going to pay bills, making sure we had insurance, especially Jenna, and trying to entertain the kids during the hottest/sunniest part of each day without going outside. In August we had several cooler days and I swear my brain started functioning normally again. I remembered – Oh yeah, we have a family project! After reviewing our “list”, I saw we had hardly made a dent in it this summer. We decided to ramp up again and end the summer with a big splash, so to speak. So here’s what we did to round out the summer…

• An evening at Cherry Hill floating in the lazy river and other fun stuff

• A visit to Ogden Nature Center (another great organization worth donating to!)

• More swimming, more walking and more hiking

• An outdoor concert

• An evening at Cowabunga Bay Water Park, a private event for HopeKids, sponsored by eBay

• And a family reunion

All of which we managed to do without getting any pictures. Oh well…

And, just like that, our Summer of Learning to Live Again was over. Jenna starts preschool soon and homeschool for our son has begun. In hindsight, I think we’re getting used to living again, as a family. I admit I wasn’t always in the spirit of our project, going along physically but preferring to stay home and read a book. But when I found myself telling a friend recently that we hardly get out, I realized as soon as the words were out of my mouth that it just isn’t true anymore. We may not get out everyday, but our lives, unlike a year ago, or even 6 months ago, don’t revolve around the hospital. Living is becoming normal. We’re making progress!

And so the Learning the Live Again project continues… until next time!…

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