Hissyfits Photography Blog

You know those friends you can count on no matter what? The ones who are good and true and allow you to be you? The ones you call when you are bored, sad, lonely or excited? The ones that when you stay the night at their house you are perfectly comfortable trolloping {I may have made that word up} about in your jammies and crazy bed head? The friends that assure you it is fine that your eighteen month old daughter just puked all over the pack and play and everything else and you believe them? The type of friends that are more like family than “just” friends?

We are lucky enough to have friends like that. The only problem is that these dear friends are back home in Kansas…and not just down the street anymore.

Every time we are back in Kansas, one of our regular pit stops is at Britton and Lisa’s. And although it is never long enough, we have been lucky enough to get to stay with them at least one night almost every time we have been home. When we were back in December, we had tentative plans of taking some pictures, but it just never worked out. So this trip I pretty much hounded them to death and we managed to make it to the park {after shoveling our dinner in mind you!} while we still had some pretty evening light.

We have known these guys for about five years or so. They lived down the street from us in our picturesque little neighborhood in Kansas City…the famous Summertree Court that I babble on about from time to time! It’s funny how we lived there for a good year and a half before we really got to be friends. They had their life…and well, we had ours, as boring as it was!!

Quite simply, we aren’t childhood friends. We didn’t experience the ups and downs of high school together. Nor did we share the newly found independence of moving away and going to college. We didn’t even know each other when we got married or had our first babies. Yet our friendship has most definitely grown and been strengthened in the experiences we have shared. So much has happened in both our lives in such a short time!

Meet Avery. She is three and a half. This little girl is as opinionated as she is beautiful! She possesses a spark and a strength that would leave most flabbergasted if they knew of the incredibly rough road she has walked in her short life. She has a spirit that is contagious, a giggle that should be bottled and a heart that bonds her family in only a way they can truly understand.

At just four months Avery was diagnosed with Tuberous Sclerosis Complex. Although I think I have a pretty decent understanding of it, I know I can’t begin to describe it fully or adequately, so click on the link to learn more.

Or to learn a little more about Miss Avery, here is an excerpt written by her mama from her Care Page:

{You have to be a member to read the updates…so if you want to follow along on her journey, sign up! Then search LittleMissAveryUpdates. If you need help, just let me know!}

Little Miss Avery came home from the hospital on Christmas Eve of 2005. I guess we should have known from her incredible birth weight- a whopping 10lb 3oz!!! that this little girl was anything but ordinary. On April 17th of 2005, when Avery was just shy of four months old she had a grand mal (genralized tonic clonic) seizure in my arms. At that moment I knew, I just knew that we were in big trouble. Forty eight miserable hours later we learned that Avery has Tuberous Sclerosis Complex (see www.tsalliance.org). TSC is a genetic disorder that causes tumors to grow in major organs, primarily the brain, heart, kidneys, lungs, and skin. Avery has multiple brain tumors, (also called “tubers” because of their ‘potato shape’), skin, heart, and kidney tumors.

On January 9th of 2007, after battling daily seizures for six months Avery underwent a two stage brain resection surgery to remove two large calcified tumors in her left frontal lobe. Avery suffered life threatening post operative complications, including infection, and a blood clot that traveled to her lungs. Yet Avery defied the odds and came home from Cicinnati Children’s three weeks after the first sugery. She then spent twelve weeks in an intensive rehabilitative therapy program in Kansas City.

Avery experienced almost six months of blissful seizure freedom before they returned in June of ’07. Since then we have worked to gain seizure control with medication. Unfortunately on November the 2nd this year, Avery suffered a status seizure that lasted an hour. At first we didn’t feel that she experienced any lasting effects from this prolonged seizure, but we are now noticing issues with balance, coordination, and the use of her right side. Avery continues to receive speech, physical, and occupational therapies each week. Further brain surgery is never out of the question, but something we are hoping to avoid. Despite the challenges Avery faces on a daily basis, she greets me every morning with a big smile. She is extremely curious, ornery, and loving. She LOVES trains (whoo! whoo!), cows (Mooooo!), and her big sissy, Kaylen (Day! Day!) Avery enjoys reading her books, playing with her toy piano, and chasing Kaylen. As many other families affected by TSC we live by the motto, “Avery may have TSC, but TSC does NOT have Avery!”

So you see, life hasn’t been easy for anyone since this little one entered the world. Miss Avery suffered some extreme complications while at the hospital having brain surgery and she is in fact a true miracle in every sense of the word. She is one tough cookie…

This little cutie is also one tough cookie to photograph! She is a mover and a shaker and I was all over the place trying to snap frames of her! She certainly didn’t want to sit still for even one second…hence the blur in this image!

When I see this next image, my mind immediately goes to the mountains that this mama has attempted to move for the sake of her daughter. Nothing is easy when it comes to Avery, nothing. Therapies, school, doctors appointments, blood draws, medications, conferences…the list goes on. From day one Lisa has gone above and beyond to make sure that Avery gets the best care she possibly can. She has gotten second opinions. She has researched. She has fought for her daughter and been her advocate every step of the way. She says she is simply doing what any other mom would do for her child, but the truth of the matter is, there are a lot of parents out there who quietly accept what the doctor says and never even attempt to do better by their child. So my friend, while you are a mom who loves both of her girls selflessly and unconditionally, you are also most certainly a hero in their eyes. {And the eyes of others!} Embrace that.  This song comes to mind…

While the focus of this one is definitely on Avery and her big green eyes, I absolutely love how you can see her little fingers sticking through her daddy’s hand. This family was blessed with a daddy who is all heart and who loves his three girls more than mere words can describe. When a child is diagnosed with any type of illness, I think it is harder on the dad. Not because they love the child more or deeper or anything like that, but because so many men struggle with sharing their feelings. I know beyond a shadow of a doubt that this is one daddy who would walk to the ends of the Earth if it meant bringing some peace to his youngest…

Before Avery happened on to the scene, Kaylen Rose was the only star of the show!

I hate to think about the fact that this beautiful big sister is now seven. Seven. Wasn’t it just last year that she herself was three and a half and sporting the uber cute Mod Zebra line from Gymboree? How has it happened that she has morphed from a Dora loving preschooler to a Hannah Montana loving girl? Time flies in every sense of the word…

Kaylen was a dream to photograph! So easy in fact that I wish I would have taken more of her with different props and in different positions! But…we were losing light quickly so I had to make the most of my time! {You may notice some of the grain in some of these…I had my ISO cranked all the way up trying to get enough light in!!} Next time we’ll start earlier and try some different stuff!

Kaylen has probably got to be the best big sister that two parents could ever dream of. She has a heart of gold and absolutely adores Avery. She loves that sister of hers like nobody’s business…their love for each other is mutual. They are lucky you see, for they have a tie that binds…that of sisterhood. It is something only they know. And while their relationship might not be the same as that of other sisters, I would bet you my last dollar that it will be one that carries them the farthest, teaches them the most and forever shines in their spirits.

Hart Family,

I hope you know how much we love you. How much our hearts hurt right alongside yours when Avery is having a yucky week or medications are being tweaked or setbacks are being had. I hope you know how happy we are for both of your girls when new things are learned, new places visited, new obstacles overcome.

Life is so much sweeter when it is shared with others. Lisa, I can’t imagine not having you in my life to chat celebrity gossip with, shop Gymboree online with and just simply talk to. It isn’t everyone who can listen to me babble on about nothing for hours on end! Some of my lonliest days have come while living here, but having you just a phone call away has been a lifesaver!

I love that our husbands have become such great friends. And although it bores me to tears to talk about mutual funds, the new grill and specifics of the hottest new boats, they seem to enjoy that kind of babble and it works!

I love how my kids love your kids. They are ALWAYS talking about them. Gentry remembers catching fireflies like it was this morning!

I hope when you see these images you see the beauty that surrounds you. I know all too well that each and every day with Avery is a challenge, but all of that seems to fade away when you see her eyes sparkle and her face light up. I know that Kaylen is growing up all too fast and that in just a couple of weeks the long days of summer will fade into a memory and a new school year will be upon all of us. I hope I managed to freeze in time just a bit of who she was this summer, who all of you were this summer…

Here’s to hoping we find our way back to Kansas for good sooner rather than later!

Filed under sour-patch-kids, sweet-families, by Bethany