We leave tomorrow.  We are flying…yet another piece to the puzzle that causes me great stress and additional preparation.  But, the upside is that in three short hours of flying time we will be in Seattle, and that beats seven days of driving.

I will do my best to write while we travel…to share with you our struggles and our fun.  But, I am heading out on a much needed vacation and will probably not write as often as I usually do.  We will be gone until early August and I will certainly be back on a regular routine after that.

Thanks for your patience with me.  I hope you are all having a wonderful summer and enjoying your own rest and relaxation with your families.  One thing I have learned is the importance of taking time to play and get away from all the stresses and worries of everyday life.  So, I wish you all fabulous weather and lots of fun…I will be in touch as I find time.

It is as much of a challenge keeping Quincy comfortable in the heat as it is in the cold.  I do not live my life confined to a wheelchair, but my suspicion is that it can’t be terribly comfortable to sit in one position when you are very hot or very cold.  Those of us who are able to walk can move around, find shade, brush away bugs, find a breeze…but when you are at the mercy of others to understand how to make you comfortable it can be quite frustrating.

Quincy really isn’t a fan of the heat.  She does like the feel of moving air and is can be made comfortable when placed in front of a fan.  I love those little portable fans that you can buy…when she’s really uncomfortable I can whip one out of my purse and give her a little breeze.

I do the best I can to keep my girl comfortable.  Tons of fluids, fans, shade, sunglasses, sunscreen…the same drill for my other kids.  She is just a little more demanding and a little less patient when she gets too warm.  I hope she can get used to it…we will be taking her to Disneyland in a couple weeks and you can bet it will be warm in Anaheim in July!!

Making me even busier than usual is the fact that my husband is out of town for more than a week.  This is the longest we have ever been apart in twenty years of marriage.  Not only do I miss his company, I do find my task of keeping three children alive, healthy and happy that much more challenging as a “single parent”. 

Rob and I just marked our 20th anniversary and it seems like a good time to reflect on how raising a disabled child can affect a marriage.  When you get married and decide to have children, the image in your head is never the reality, even if you have a healthy baby.  Babies are demanding and exhausting.  We are inundated with photos of perfectly fit celebrity moms traveling the world with their children and we learn quickly that is far from reality.  Without nannies, personal trainers, and assistants raising children is a full-time job that usually requires putting your personal health, fitness and sanity on the shelf for quite some time.

For those of us who are raising children with disabilities, the strain of being a good parent to our other children, a good wife to our spouses and a parent who can handle the daily stress of raising a child with exceptional medical challenges can be immense.  I have seen many marriages fail under these circumstances.  I did not know when I married my husband what kind of a father he would be…we were young and idealistic and hadn’t faced a single challenge in our lives.  There was no way to even begin to predict what kind of partner he would be when faced with the circumstance of watching his firstborn, healthy daughter fall completely apart medically immediately following her first vaccination.

We struggled with guilt, exhaustion, denial, fear, grief.  We had to readjust our hopes and dreams, I had to give up a career I loved, my husband had to make career decisions based on what was best for the family instead of what was most personally fulfilling,  and our personal fitness and well-being became a distant concern. We had to learn to develop a supportive and loving relationship with each other despite the difficulties that  we faced.  We had to decide together that this would not take us apart but would make us stronger.  In twenty years we have had some dark days, to be sure, and even now we make sure we take time to take care of each other as well as our children. 

I do not presume to have the answers to how to hold it together when you face such a tremendous crisis in a marriage.  We muddle along the best we can.  But, if I do have any advice to share it is this…raising a child with disabilities is hard.  It’s messy and scary.  Do not let high-profile, successful moms raising children with disabilities, like Jenny McCarthy or Sarah Palin, make you think that it is realistic to have it all.  There is a trade-off with every decision they have made.  Do the best you can and be proud of who you are.  Just as we see our children to be beautiful and smart and delightful we must view ourselves the same way.

Twenty years with my husband is a gift that I will not take for granted because for us this is just the start!

But, to our delight, we have found that the sandal that our other children (and my husband) prefer for their feet works perfectly for Q.  It’s the Keen Newport H2.  These are great shoes!  They cover the heel and have a protective toe box, are fairly easy to slip her foot into, and come in tons of fun colors!  The only downside, if there is one, is the price.  They are priced around $45 like a good pair of shoes.  But, if you shop at the end of the season or wait for sales you can usually pick up a pair for less.

I love the tan marks these shoes make on Q’s feet, too.  It’s always the sign of a great summer when we take off her shoes and she has stripes all over her feet from wearing her Keens.  So, her new shoes arrived today and I expect lots of sunshine and warm days to follow…isn’t that how it works? 

Aquariums and hands-on learning centers are great places for children with disabilities to experience.  Most of these places encourage children to touch and feel and smell and, for children like Quincy, the sensory input is powerful.  Plus, aquatic centers have a wonderful sense of calm about them, which is something else that Q is drawn to.  There is a serene, almost hypnotic, feeling that comes from sitting in front of a tank of beautiful fish.

We usually walk to the SeaLife Center so we use our large jog stroller for Quincy.  She is very comfortable in it and the facility is large enough for maneuver easily with the larger stroller.  This is Q and I in front of the sea lion tank.  We are waiting for Woody, the very large adult male sea lion, to swim on by.

Here is Woody as he approaches Quincy and I.  It seems as if he is looking right at us each time he swims by…I’m not sure he really is, but it feels like it.

In this image we are lucky enough to have both Woody and a female companion swim by us at the same time.  It’s amazing the size difference between the two! 

This is our favorite spot…Quincy and I can spend most of our time sitting right here just enjoying the show.

Ramps have been put into place and Quincy is in her “ramp chair” ready to come out of the motorhome…

We drop the wheelchair down in to the stepwell, which isn’t difficult, and then she is ready to come down the ramp.  My handsome assistant is my husband, Rob.

Ta-da!!  We are safely down!  I think Quincy should be a little happier about the whole process, but I guess she was content in the warm motorhome and not all that thrilled about a walk in the brisk, coastal breeze.  Sometimes, she is a typical teenager! 

The boat harbor is a wonderful place to stroll around.  There is a great bike path that runs the length of the community so we can stroll from one end of town to the other with Quincy at a safe and leisurely pace.  The harbor has great shops and a wide boardwalk from which we can watch the boats and enjoy all the sights and sounds.

One of Quincy’s favorite places in Seward is the Alaska SeaLife Center which is an extremely accessible facility.   The SeaLife Center has created a unique experience where we are able to watch sea life from underneath the surface of the water.  Quincy is completely captivated watching the sea lions, otters and diving birds from their underground tanks.  It is something to stand next to a glass tank and have a massive sea lion swim right on by!    It also has an area where Quincy can touch sea life, like starfish and sea urchins.  The sensory experience at the Alaska SeaLife Center is something delightful for all ages, but even more so for children like Q who depend on sensory input.

In addition to these attractions Seward also has a great community playground for the kids to play, wonderful restaurants that are very welcoming to families like mine, and, if you are the adventurous type you can always climb Mt. Marathon.  The view from the top is breathtaking.  But, be warned…it is a very challenging climb!  We always enjoy gracious hospitality when we visit Seward and that, combined with great accessibility, definitely gives it a place in my rankings of Great Accessible Communities.  If you get the opportunity to travel to Alaska, be sure to make Seward one of the places to visit!

I often refer to my work on vaccine safety as a battle and I believe that is a fair term.  There are definitely very strong divisions amongst the stakeholders and although we can find common ground it’s probably fair to say our differences far outweigh our agreements.  So, in the arena that I participate it is a polite battle or a negotiation, if you will.  I always tell my husband that I will do this work as long as I feel like I am effective, I am making a noticeable difference in progressing the safety of vaccines, and that I am not wasting my time, my family’s time or my family’s resources.  I’m sure it’s not surprising that I assess these criteria frequently. 

For the past year the major focus of my work has been on the Vaccine Safety Work Group (VSWG) for the National Vaccine Advisory Commission (NVAC).  This work group has been asked to write a two-part White Paper that focuses on the issue of vaccine safety.  I won’t bore you with the details of our work…if you are interested in what we have done thus far you can check out our recommendations for the first half of our task on the NVAC website.  But, what I do want to share is that I have spent countless hours in the past year on this project…most of this time is unpaid, volunteer work.  As a work group we only make recommendations to the committee that we report to and then hope that they will accept our work, pass our recommendations,  and then move them to the Assistant Secretary for Health and Human ASHH) Services.  Our VSWG recommendations included language that we really labored over, and included issues that really push the Center for Disease Control (CDC) to take a serious look at the issue of vaccine safety.

On June 2 the NVAC voted unanimously to accept our recommendations.  It was really exciting to see that our work held up with minimal change will be moved on as recommendations to the ASHH.  It told me that I did not waste an entire year of my life, time away from my family, and even personal financial expense to do this work.  Perhaps the pieces of the work that mean the most to me will not hold up beyond this process….that is a very real risk.  But, it held up far enough into the process to make a difference.  It becomes public record.  It will become part of a correspondence with decision makers at the CDC.  It will become part of the historic record.  That is why I do this work.  And that is why I will continue to do it for a while longer.

The ramps worked quite well and we are pleased that we seem to be on to a good solution to our travel issues with Quincy.  But we have some kinks to work out which isn’t a surprise.  There are always kinks when developing a new system.  We knew the weight of the ramps was probably going to be an issue.  It’s not that Rob and I can’t muscle them around (for a small woman I have an impressive amount of strength in my back and arms from lifting Quincy all these years) but moving them something we cannot do quickly.  That is a problem when you are camping and it may be cold or wet or, even worse, buggy.  When the ramps are in place, the door and the screen must remain open and so the rig quickly loses all it’s heat and can fill with mosquitoes.  A lighter, more nimble, ramp that could be moved quickly in and out of place would really help cut down on this issue.

Also, we initially tested the ramps in our very level driveway, but when we camp our sites are rarely level.  We had to raise one side of the motorhome substantially in order to be level, so the ramp was much steeper than we expected.  But with a person at both the front and back it was still quite easy and safe to maneuver up and down.  However, if Rob or I are alone with Quincy in the motorhome we would need to be sure we were on as level as spot as possible so the ramps aren’t too steep for one person to manage alone.

Rob found some lightweight aluminum ramps online that only weighed 8 pounds and look like a perfect solution to our problem.  Only issue is getting them shipped to us.  Unfortunately, if you live in Alaska (and probably Hawaii and Guam) most companies freak out when it comes to shipping anything of an unusual size.  So, we will have to help the company understand that we are a part of the United States and we get Postal service as well as UPS and FedEx deliveries.  We’ve been through this conversation about a million times and I don’t expect it to be a hurdle that we cannot overcome.

My intent is to put up some pictures of our present ramp system as well as whatever modified option we come up with.  I am traveling for a week and do not have access to my photo files, but promise to do so when I get home.