So you wanna help...

Sometimes people want to help, but don't know how to...especially right after the injury. And quite honestly, you're going through such a big change in your life the you don't even know where to begin to ask for help. In my case it was a mixture of that, feeling like I could handle everything myself and had to be strong, and feeling to proud. In this time, I myself, felt so helpless that I didn't want to relinquish the little control I had. But I've never been very good at asking for help. That being said, we had a lot of support from our friends and family. Our families jumped right in and took initiative trying to do what they could. My husband's command dropped by in droves to offer help, check in and pray over him. People made food, dropped by with goodies and even made donations.

Now that we've been doing this for over a year, we intend to pay all of this goodness forward to others. With that hindsight vision I think a great way to help is by considering helping those organizations created to help. It's an indirect kind of helping. Part of paying it forward, on our part, is spreading awareness of these various organizations that we would have otherwise heard nothing about. These are some of the amazing groups that have helped us along the way...be it advocating, providing resources, offering financial help and even giving us something to look forward to. This is a list of legitimate companies and organizations to consider:

Wounded Warrior Project - This may come as a surprise because they have gotten a lot of bad press as of late. However, the chapter here in Hawaii that we've been working with has been nothing short of helpful. They have various specialists that have worked diligently in preparing us for our transition from active duty to retired. They have set up support groups for the injured as well as their families/caregivers. They have provided various opportunities to get out and feel a part of the community...to enjoy life again as they figure out exactly how to live this new life. And with the negativity they've seen recently, we as a wounded warrior family have been affected...the activities are less frequent and sub par compared to what was offered in the past. Although very thankful for what they continue to do for us, we believe they deserve a second chance. www.woundedwarriorproject.org

Semper Fi Fund - This is an organization primarily meant to help marines and sailors financially. They offer monies to aid in short term expenses. For example, when we were inpatient and essentially operating two homes (we left some of our children with family while we were in California), they provided us with a rental car to get around. And when we needed to fly to the mid-west for a family emergency, they helped with some of those expenses as well. They continue to check on us and ensure that they are offering the highest quality help as possible. That in and of itself is greatly appreciated!!! semperfifund.org

Fisher House - The Fisher family donated a nice chunk of money to build homes throughout the country to house the families of sick and injured veterans. The accommodations are gorgeous and the staff is very polite. It creates a sense of home when you are away and working on recovering. The Fisher House was a huge life saver as a hotel would be very expensive for the length of time we were away and for the area we were in. The home was on the hospital grounds allowing me to go to and from my husband's hospital room whenever I needed and they were extremely accommodating to my family. We made some great friends while there as you all bond over the hard times being faced. fisherhouse.org

Fisher House Hero Miles - The Fisher House also partnered with various large airlines to provide flights for significantly injured and sick veterans to fly to and from medical facilities as well as fly family members to visit the veteran. Families, especially military families, are constantly separated from each other. To have the option to allow them to visit during such a difficult time of recovery is so amazing. We have yet to use this option, but do indeed look forward to having some family visit sometime soon. www.fisherhouse.org/programs/hero-miles/

Accessurf (Local to Hawaii) - This is an awesome group of ocean-loving volunteers who provide the opportunity for various injured and ill people from all walks of life to get back into the water when they otherwise would either not be able to or be afraid to. They offer surfing, kayaking, paddle boarding and other ocean activities for the disabled. The ocean, in our case, was a force to reckon with, BUT we also know that the ocean has great healing powers. We have been able to get my husband back in the water a year after his accident in the water and you know...he had a smile from ear to ear. Our family was also able to participate and it was just a very lovely time. Thank you, to this group!!! accessurf.org

Thank you to all of these organizations for being such a positive addition to our care team. You all probably made the past year a ton more bearable in some way or another. I hope that you will continue to do the good that you do!!!

Wha I learned about traveling with a Quad

Everyone dreams of traveling, of going places. I still get a little jelly when my friends are making international stops or hopping on a plane with little stress and plans of a good time. That's not my reality. First of all, it's not easy to travel with 4 children, let alone 4 children and a quad in a wheelchair. It's expensive, it's stressful, it takes a whole lot of planning and coordination and that's just the half of it. But I still have the desire to see the exotic, bright colors of Santorini or taste the delicious food and walk through the charming towns of Venice and Milan. I want to make memories with my children at Universal Studios or visit family in the mid-West. Now, after a couple of trips under our belt with and without kids, I think I am learning some of the ins and outs of traveling.

We live on a rock in the middle of the Pacific Ocean. If we want to go anywhere else in the world (besides another rock) it is a minimum 5 hour flight. I hate long flights and it's that much harder when you're trying to occupy the family. To get on a plane, I, the travel coordinator, need to (for only about another 2 months) remind the husband to request leave, book the airline reservations, call the airline to let them know we will need special assistance and request a lift team to help transfer J onto the plane, make arrangements ahead of time with TSA to help with getting through security and pack all possible medical supplies that we may need along with the needs a typical family of 6 would need to pack for a vacation.

Contrary to what I originally thought, I can book our air travel on one of the discount sites. My initial thinking is that I have to book directly with an airline because we need special seating and to request a lift team to help J transfer. But I guess that's not really necessary. I can book on Kayak.com and just call whatever airline we end up booking with and request the lift team and seating later on. That's kind of a big deal because we all know that booking directly with an airline is often more expensive.

Once travel is booked, I need to reserve a wheelchair accessible vehicle - these rentals typically cost 3x more than your average compact rental car and you need to pay extra to have them deliver it to the airport because they are not usually operating at an airport. In smaller towns there are very few options to rent from and that becomes an issue and more costly in and of itself.

Than there is making hotel reservations. For a large family in a room that is ADA accessible, you can expect to pay much more than the going deals. Most hotels only have a couple of ADA rooms available and they are typically expensive suites. We've stayed in a 2 bedroom suite that is plenty big, but cost us an arm and a leg. We've also stayed in cheapy hotels where I would never want my husband to use the equipment they have because he could catch something nasty! So, we've decided to go ahead and purchase a portable shower chair. It should fit over a regular toilet for bathrooming and it also has a slide feature that would slide over the rim of a bathtub so he can sit and shower. It costs around $2000.00 but comes with a suitcase to travel with and can completely be taken apart to travel easily with. He would need the chair for toileting purposes anyway but it has the added benefit of not requiring a roll in shower. Therefore, we can also book a hotel on a discount site like priceline.com and take advantage of a regular room! Win!!! Find some options here https://www.amazon.com/s/ref=nb_sb_ss_c_1_8?url=search-alias%3Daps&field-keywords=nuprodx+multichair&sprefix=nuprodx+%2Caps%2C296.

Last, but not least, some quads require a nurse or other caregiver besides yourself to come in and help with some of the care. That's another factor that needs to be addressed. You would have to be willing to find an agency in the area you are traveling to and hire a nurse you have never met to come in and take care of those personal issues. That is an added cost along with any equipment you may need. These medical equipment rental companies can be hard to come by as well. Luckily J continues to do therapy and has practiced sliding transfers with a board which eliminated the need to rent say a hoyer lift and he is also able to do 90% of his bathrooming. We figured we could go about a week without nurse care in that case. I should also note that some big cities have hotels with everything you need. For example, I know that Vegas has ADA rooms complete with ceiling lifts. However, I do not know what they charger such rooms and that's definitely something to consider.

This summer, and most likely every summer for the rest of our lives, we will have to make an annual check up visit to California for Jason. And hopefully, we will get to make each trip a vacation possibly for the whole family. This year, it's Legoland and San Diego. And as we learn more ways of coping with travel, I'm thinking it can only get easier. And I have to remember to go ahead and pack everything in the suitcase. We did check a couple of items but everyone also carried at least one bag. Carrying carryons while herding kids and keeping track of every bag and helping with the hubby's transfers is not an ideal situation. Checking suitcases for the win! P.S. Medical supplies are not charged for checking in.

Sorry, can I also add that places like Legoland and Disneyland, other attractions in San Diego are ADA accessible. We were able to do bus tours and was able to skip lines in some cases. There's special seating in stadiums and theaters, etc. We've also heard that Disneyland has rides that allow you to just roll right on in your wheelchair, which is absolutely amazing. Legoland was accessible thoughout the park, but we only successfully got onto 1 ride. This was because all others required him to transfer out of his chair onto floor level landing. He's not efficient enough to get back into his chair from the floor even with help just yet, but we'll be working on it.

If you are reading this and have other tips or these helped in any way, please let me know in a comment. :) This is a continuous learning process for us.

~S

Riding the Lost Kingdom Adventure at Legoland

Drama Queen

This is going to sound absolutely terrible. But sometimes, I just. Don't. Wanna. I don't wanna pick up that item he dropped on the floor, I don't wanna lay out the meds, I don't wanna put him into bed. As a husband and wife, there are definitely bound to be days that you just need your space, when the other will do something to tick you off and you just want to be as far away from them as possible in that moment. Well, that luxury is out the window when one is almost completely reliant on the other. Yes, we still fight because we are still two human beings cohabitating in one house, one life. And on those days that things just aren't clicking or there weren't enough hours of sleep had the night before, I just don't wanna.

The call for help sends a ripple of frustration up my spine and I mutter, "of course you do." The extra intimately close proximity necessary while I'm helping him transfer is the last place I want to be. In my head I say, "Go ahead and do it by yourself." Those days that I'm picking up after the kids, or rush off to many appointments, scrambling to prepare dinner for everyone who is absolutely staaarrrrving, chasing the kids into the shower and off to bed, doing the chores that had once been "his" chores - on those days that I'm just slaving away and he's sitting there on the PlayStation or his phone I just want to scream, "Do SOMETHING!"

I have many of these days. To the outside world I seem to be managing it all with not a stress in the world and a smile on my face. I am the YES girl. I never ask for help. But inside I am drowning, having an emotional breakdown and full of anxiety, anger and boy am I tired. 

We do talk. When it's gotten to the point that I can no longer hold all of it in and I am sulking or hiding or uninterested in any of the things going on around me. When I don't want to talk, he notices. He asks me what's going on. Sometimes I feel too guilty to lay it out on him. Other times, I just can't take it anymore and I tell him what's inside. It's not easy. I know deep down that he doesn't want to ask for help. I know that he's restless and bored and needs something to do as well. I know that it's not his fault that now all of his burden falls on me. But we talk. I explain that I'm overwhelmed, that I get frustrated being the only one working my tail off while he gets to sit around doing nothing. I tell him I would like to see him try harder to do things around the house. I tell him that it makes me not want to be around him. But it's a vicious cycle that repeats itself. At this point, he is still trying to figure out what he can and cannot do. He is still trying to make his way comfortably around the house. He deals with the sadness of being confined to the first story and hasn't seen or slept in his own bed in over a year. I can't imagine the struggles he is faced with every single day.

I carry much of the physical stress of caregiving and maintaining home life as well as the emotional stability of our entire family. I am the anchor keeping everyone from drifting off into the emotional abyss...keeping everyone in check. And in these occasional lapses in sympathy when it all becomes to big of a cross for me to bare, I just. Don't. Wanna.

The Accident

Just over a year ago, our lives changed for forever. I refer to the day or occurrence or tragedy as the accident. It started as a pretty typical weekend morning, except that I had a photo shoot early on. When I got home, we had decided it was a nice day to go to the beach. We tried our usual spot - a nice, quiet lagoon with a mix of locals and tourists and no ocean current. But the parking lots were completely full. Now this is where we can insert the "woulda coulda shoulda" phrases. We decided to find somewhere else to go because we were all dressed and ready for fun in the sun. But at the same time, we had debated just going home defeated.

We found another beach park very close to home. It was bustling, but this place was filled with more locals than the last. Many tents and bouncy houses were set up for a good time. The current looked strong from the get go. In fact, we had told the kids they weren't allowed to go in unless Mom or Dad were with them. We wanted to sit and bask for just a little bit before going in but until then it was ankles deep only.

When my husband finally gave in to the begging and pleading to go into the water and after getting sweaty from the heat and sun on shore, he went in. He wasn't even in for that long. I wasn't watching the time or anything, but it felt like 15 minutes-ish. Husband and the 3 oldest (if you haven't been following me along the whole time, we have 4 little spawns) were jumping around in waist deep water with waves crashing around them just like many other visitors that day were and much like countless people everyday do here in Hawai'i. But in what I can only describe as a freak accident, he had jumped into a wave the wrong way and the strong current took him further down into the water than he expected. He hit his head on the sandy ocean floor in just the right way and broke his neck. He was immediately paralyzed. Had I not been sitting on the sand with my than 4 month old baby taking pictures of everyone, I probably wouldn't have noticed him calling for help. He was not able to flail his arms to get my attention and the waves were pretty loud muffling his calls. After a failed attempt by my 8 year old, I left my baby on the towel, directed my daughter to get out of the water and look after him and attempted myself to pull the dead weight of my husband out of the water. I needed help from another swimmer nearby and we pulled him to shore.

Four hospitals later (1 extended 3 month period on the mainland) and much therapy, my husband is diagnosed as a C6/C7 quadriplegic. We faced many struggles early on...most of which were emotional. We had to grieve this tragedy. We had to deal with it emotionally (and still do) and the way we were feeling played very much into the way we dealt with other problems handed to us. We struggled to get to the facility we had researched and wanted to go to for the best care. We struggled with being away from three of our children. We struggled with insurance issues. We struggled with getting our brand new home modified in a timely manner for our return. We struggled with purchasing a wheelchair accessibly van. We have struggled.

Today we have managed to face many issues and continue to navigate our way to normalcy. It's a road to recovery full of ups and downs. This accident has changed us in many ways for both the good and the not so much. But I have decided to share the ride with anyone who is willing to listen in hopes of connecting with others in similar situations. I have also found much therapy in writing...poems, journaling, etc. It's a channel that I can release the negative energy in order to make room for the positive and also to receive positive feedback and support through the good. I hope to share my experience in a way that is relatable and makes you both laugh and cry.

ske.

Latest Pictures Part 2: The Holidays

Keeping this short and sweet because both kids are calling for my attention!!!  Yikes!


Christmas Eve: After church and getting ready for bed (Thanks, Grams, for the matching jammies).  Can you tell which one is Rudolph? Rieley had been crying because she was upset she slept through mass and then didn't want to go to bed.  Lol.

Christmas morning...the kids both got tons of great gifts.  Thank you, everyone, for your generosity!!

Day after Christmas, we got some snow via a blizzard! It was a little late, but at least we go our White Christmas.  Rieley enjoyed the sled Santa got her! : )  Then she made a snow angel before going back inside for hot cocoa.

We tried to celebrate New Year's like we did back in Hawaii with a little bit of fireworks.  Grams and Papa Joe drove down from NY with even more Christmas gifts including the lifesize foot piano that Rieley enjoys.

Just some random pictures of the kids having fun in the snow and with the neighbors.  : )  It's been a pretty chilly winter with lots of snow...we've gotten 3-4 feet total since the first blizzard after Christmas to present.  It's just building up and the kids are truly making the most of it.
Not the best pic of the little prince, but on 1/8 Mr. Man made 2 months old.  How time flies!!!  If you can't tell, he's growing rather quickly.  At his last appointment, Taytum measured 24.5" (a whole 5 inches longer than he measured at birth) and 16lbs 5oz! (a whole 9lbs heavier than his birth weight). That puts him in the 100th and 91st percentiles respectively. Yep, he's a WHOPPER!!

Latest Pictures Part 1: Trip to WV and then some

Here are the pictures I promised. Enjoy! : )


Pic 1: 'hawkin it.  Pic 2&3: We had just come home from taking family portraits and were dressed up so we figured we'd take our own pics in front of the tree.

We saw some of God's most beautiful work in the scenery on the road trip to West Virginia. These particular pictures were taken while passing through PA.

Playing at Grandmere's house.  The cousins had a blast playing together for the 1st time.  They sure tired out poor Jason.  Hehe.

More beautiful sights on the way back home. It was snowing through the mountains of WV (where we also passed the town of Elkins...lol) and the sunset in Maryland painted fabulous colors across the sky.  The night after the lunar eclipse, the moon looked huge in the dark nights' sky.