Monday, June 18, 2018

Fear to Love, Hawaii Edition

This Little Miggy || Hawaii
Thanks to Alaska Airlines for partnering with me this year on a discussion about fear, love and traveling as a special needs family. You can read the other 3 posts in this series here, here and here. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. As always, all opinions are my own. Family photos by our friends Mark and Anita Warnick. 

Hawaii. It was amazing, I would probably even use the term amazeballs. We had a great time and I want to tell you all about it, but first... a metaphor.

One thing I have learned from working out and weightlifting is that you reach your fitness goals by lifting more than you think you can. And then your muscles get stronger, so you lift a little more. And stronger and more, and stronger and more. Which means the work of lifting weights never really gets easier, because you are always lifting a little more than you think you can. (Or doing one more rep, or running longer, or doing a harder workout, etc.) Therefore, no matter how strong you get, weightlifting is always hard. BUT you also learn that no matter how hard it is, you can do it. You can almost always lift a little more than you think you can. You're stronger than you think you are. 

Which of course I am now going to compare to special needs parenting because hi, it's me. As I've said a hundred times, the journey of a special needs parent is one from fear to love. When you first receive a diagnosis, or hear that something is "wrong" with your child most of us feel a blinding fear. The type of fear where the world suddenly stops, voices become muffled and everything goes in slow motion. And this fear is heavy. "I can't lift it!," you think. "I can't do it! I'm not built for it!" And what you find is that you're stronger than you think you are, empowered significantly by the love you have for your child.

Many of us--not all--conquer the fear we once had of having a child with special needs. We love them and therefore we do the appointments, the therapy, the machines, the specialists, the surgeries, fighting the insurance companies, and sometimes fighting the doctors. All of it. We do it again and again and again. We are stronger than we thought we were.

But in a way, it never gets easier because there is always a new worry--a new fear--on the horizon.  At least now, you know you can do it. Even when you can't do it alone and you need help and maybe still feel helpless...somehow you know it will get done. Whether it's another diagnosis, starting school, residential treatment, public meltdowns, hospital stays, inaccessibility, or illness. You face the fear, you get a little stronger, you face another fear and get a little stronger still. That is the cycle for many a special needs family.
This Little Miggy || Hawaii

So Hawaii...

As I've spent this past year working with Alaska Airlines, talking about our fear to love journey as special needs family, travel has been a big part of this conversation because travel is amazing and eye opening and soul expanding! But travel as a special needs family is straight up daunting. Going to Hawaii as a family is a dream come true, but to get to that dream we had to square up and break through the fears first. My husband and I each confided to each other our anxiousness about our trip in the weeks before. There was a small part of both of us that didn't want to go. It would be easier to stay home. Stay comfortable. But we also knew from experience that on the other side of fear and discomfort amazing things awaited our family. Once in a lifetime eye opening and soul expanding experiences that would be stitched into our collective family fabric forever. Because that's what travel does. That's what Hawaii did for me 20 years ago and that's what I wanted for my family.


Every family and situation is different, but for us the main challenge of travel has to do with accessibility, both in terms of actual travel and transporting a power wheelchair and also in finding fun activities the whole family can participate in.

Before the travel even begins we start thinking about Lamp's power chair. Almost every flight we have ever taken it on, some part of her chair has come back broken--so it is always a stressor to take it with us. Keep in mind that this is a $10K chair, which is actually very inexpensive in the power chair world, but yeah hi, it's still 10 grand. (Some of you may even remember that her chair was actually inoperable for a while recently. My husband did some work on the chair himself to get it back up and running at almost full capacity...another post for another time.) And once we land accessibility is another question--renting a van that we can load her chair into, finding an accessible-ish place to stay. And then we think about the activities we can participate in as a family--are they accessible? If not accessible, can we manage without the wheelchair?
This Little Miggy || Hawaii
We told Lamp her chair can't go in a revolving door. She disagreed. 

First, I want to say that both my husband and I agreed that Alaska Airlines took the best care of our wheelchair that we've ever experienced with an airline. Really. They were attentive as they listened to our handling instructions and kindly reassured us they would take good care of her chair. And they did. They actually tied it down in the cargo area so that the chair would stay in place and not get damaged. (We were once told our chair was laying on it's side after a flight. Sigh.) This was a huge relief! And please know that I am under no obligation to say this. They were sincerely very attentive and took good care of her chair.

As for Hawaii itself? It was everything we hoped it would be--eye opening, soul expanding and magical. The great thing about travel is that you can plan your trip all you want, but you can't plan for the unexpected, beautiful moments that unfold while you're there. Here's what unfolded on our family trip:

The first couple of days were spent in Waikiki (my husband had a dental conference there) and after I gave a proper welcome to the people of Hawaii
This Little Miggy || Hawaii

we mostly did a lot of this:
This Little Miggy || Hawaii
This Little Miggy || Hawaii
Of course beaches aren't accessible AT ALL, but we still bring our double stroller and we manage. The girls and I were on our own for those first couple of days and we hit up the zoo (skip it) the beach (duh) and drove around Diamond head for some beautiful views (unfortunately Diamond head trail is not accessible.) I was worried taking all the girls to the ocean by myself as my two youngest are non-swimmers. Thanks to the floaties we did great. My husband was worried about me taking Lamp's chair around town since I can't get it in and out of the car on my own. I assured him it would be fine, I would just ask for help when I needed to load or unload it. And so I did. Even at night in the grocery store parking lot, talking to the sweet Samoan parking attendant for 10 minutes who helped me get the chair out of the car and wouldn't let me pay for parking either. Most people are mostly good. I always found someone to help me out with the chair. That's another perk of constantly exercising those fear muscles... I've become a lot more emboldened. We already have to do things differently than most people, we already get more stares and attention than most, and problem solving on the fly is a part of the gig. So we just charge ahead stepping out of our comfort zones and often asking others to step out of theirs, because our "typical" requires us to do the atypical more often than not.

After a couple of days we packed it up and hightailed it to the Northshore. But before we left, we hit up Leonard's for Malasadas (Portugese donuts) in Honolulu and we did not regret that decision one bit. (Highly recommend.) 
This Little Miggy || Hawaii

And finally the North Shore. The drive alone is it's own sight to see. Lush, jagged mountains on your left, crisp ocean water on your right. Paradise.
First stop, BYU-Hawaii. My old campus 20 years ago.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
A campus covered in palm trees and a stones throw from bright, blue pacific waters? I'll take two please. Also, I think I may have convinced at least 2 of my children, maybe all 3, to go to school here one day in which case, jokes on them because I will obviously be coming along.

We visited the Laie, Hawaii Temple. I recalled how I used to come here almost every Sunday after church to think about life (boys) and write in my journal (about boys). It was a full circle moment for me to realize that I used to come here wondering who I was going to marry and what my life would look like and 20 years later, here I was with my future boyfriend and our future kids. Thanks for delivering on that magical moment Universe.
This Little Miggy || Hawaii

We waited in a long line at Giovanni's Shrimp truck (worth it) while I loudly recalled how "there use to only be ONE food truck here back in my day" to anyone who would listen. No one cared.
This Little Miggy || Hawaii

And of course we spent a day at the PCC or Polynesian Cultural Center where we got matching family tattoos and spent some time trying to make fires. So basically my kids are ready for juvy. But really they loved the PCC. They went to different villages and learned about the different customs from the different Pacific Islands. We watched the canoe parade, ate pig at a luau and enjoyed the amazing night show.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
Eventually we made our way to my favorite North Shore town Haleiwa for the famous Motsumoto's shave ice. It did not disappoint. As mouth-melty as I remember. Of course I loudly proclaimed, "I remember when Motsumoto's was just a little shack next to a dirt lot!" No one cared.
This Little Miggy || Hawaii
This Little Miggy || Hawaii

Speaking of magical--I mean I wasn't, but can we?--before our trip we found out we were going to be in Hawaii at the same time as some of our best friends from San Antonio. So we ended up booking places next to each other and spending a few days together. (And if that isn't crazy enough we ran into 3 other people/families we know while we were there. One of them was a girl I knew from college and hadn't seen in 20 years--we were in the condos right next to each other. What? Forget magical, that was straight up voodoo.)

So with our good friends we hiked up Waimea canyon together (accessible trail!) and everyone but me swam in the waterfall because I'm a grown up and I get to make my own decisions.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
Give me all the beachy hair.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii

After Waimea we left to find a beach we had heard about with sea turtles. 
Uh, found it. Uh-mazing.
We almost left after seeing the turtles on the beach, but luckily we decided to stay and snorkel. We spent the next couple of hours snorkeling in the waters with giant, wild sea turtles. That was as close to being a mermaid as I've ever been. My oldest was in heaven, while the younger two were a riding the line between freaked out and amazed, but I am certain my girls will remember that day forever. I will remember that day forever as I had never swam with or had even seen sea turtles before and it was thrilling. A great precursor for what we would do the next morning....
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii

 SHARKS.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
We swam with sharks. I swam with sharks! This was checking off a major bucket list item while at the same time stoking the fire for more swimming with sharks! We went with an organization called One Ocean Diving. They do research, conservation and education about sharks. So when they take you out to swim with sharks, they are actually collecting data and of course educating people about sharks. Which is really cool! But when you're on a boat headed to the middle of the ocean in open water, "educate" is another way to say they SCARE THE $@*% OUT OF YOU AND YOU REGRET THE FACT THAT YOU PAID ACTUAL MONEY TO BOARD THIS FREAKING DEATH BOAT. Then, once you're out in the middle of the ocean they stop the boat and keep churning the motor to attract the sharks' attention. You start to see large, grey shadowy figures swimming beneath the surface of the water and it gets real ya'll. REAL real.

At some point you look at your spouse who is supporting you and your crazy shark dreams and you think, "Crap... I should have double checked the life insurance policy." But its too late now, so you slowly enter the water. But as soon as you're in the water it is no. big. deal. You're swimming with 8-12 foot sharks and it's fine. They prepared us for the chance that the sharks would come close to check us out, but they didn't. You know what to do if you come face to face with a shark? Make eye contact. Um, still not totally convinced that intense non-verbal communication is like shark mace, but whatever. Anyway, the sharks stayed below us quite a ways as we snorkeled around on top. You could go over to the lead diver and tell her you'd want to free dive down, so we took turns free diving down a few feet and that's what these blurry photos are from. The sharks were calm, beautiful and graceful. As one of the instructors pointed out, they're actually very polite predators as you couldn't do this with a lion or a bear. Even though we both got sea sick on that excursion, I would still say swimming with sharks and turtles were the highlight of the trip for me.
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
This Little Miggy || Hawaii
*****
When I was 19 I moved to Hawaii for a year to attend school. I remember stepping off the plane and having the immediate feeling of being home. Hawaii didn't stay my home forever, but for that time in my life it was home. It was exactly where I wanted to be, and I believe it was where I was meant to be. So as I returned for the first time in 20 years I wasn't sure what I would feel... would I feel that same tug? Would it make my life in Ohio seem less than? Would I be nostalgic and emotional all week long? It wasn't any of that. Instead it was a feeling of relaxed contentment that once again I was exactly where I wanted and needed to be. With my family, my people. They are my home.

When we did finally get home Lamp said to me, "Mom, I feel Hawaii sick. You know like homesick, but for Hawaii. It just feels like home, mom."

I never told her about my experience above, she felt that way all on her own.

Easily our most memorable and favorite family trip to date.
Not easy, but easily worth it.

Fear to love and once again, love prevails.
XO

Tell me, fellow special needs families, what are your biggest fears when it comes to traveling as a family? How do you work around those fears, or do you? I met a mom the other day who says they no longer fly, they only drive now because it's just too hard with their daughter's very large power chair--I get it! So I promise no judgement. Personally I think the airline industry needs to have a place for powerchairs on board the main cabin and I dream of making that change. What about you? Is there anything specific to special needs that keeps you from traveling? Is it something that could be fixed? Any other thoughts, feelings?

2 comments:

  1. Anonymous11:45 PM

    My youngest son, who has Down syndrome, has a very low immune system (i.e his WBCs are low, sometimes SUPER low, and the composition is often abnormal). According to our/his oncologist "people with Ds sometimes have wacky bone marrow." Anyway, he is just 18 months old so traveling hasn't been a huge issue, except that the idea of being in an airplane with him and all the germs seriously gives me a panic attack. As it is I am constantly dousing myself and my other kiddos in hand sanitizer and have basically become an immunologist in my quest to prevent him from getting sick. Anyway, he might grow out of this. Only time will tell. In the meantime, I do wonder if I'll ever have the opportunity/need to renew my very expired passport. But as you know, being a special needs mom teaches you to take one day at a time and to not look too far ahead and to let go of expectations and to fully embrace and love what *is* in the here and now.

    In the meantime, you are brave and inspiring (and I'm not referring to the whole swimming with sharks thing ;)!

    Roxana

    ReplyDelete
    Replies
    1. Yes, one day at a time is not a natural state for me to be in, but something I've definitely learned to do so as not to drive myself insane with all the what-if's. I do hope you'll have the chance to renew that ol' passport someday soon. :)

      Delete