Today we had the immense pleasure of attending an Oilman’s fundraiser in honor of The Nephcure Foundation in east Texas. It was the first in a series of fishing, golf, and clay shooting tournaments. Josh and I are truly blown away by their generosity and hospitality to our family and rare kidney disease research. It’s hard to describe what it was like to met two other individuals whose lives are effected by FSGS and Nephrotic Syndrome. It’s like coming home, like they are family right away, I’ve really never experienced anything like it. I met Kelly over the phone right after Olivia’s diagnosis and she has been a huge support to us. Her 7 year old daughter has been battling FSGS for 4 years and has gone through a transplant only to have the disease attack her new kidney. Today we got to met in person and we asked her a thousand questions and she helped entertain the twins!
Nephcure had a GIANT poster made to give a face to the disease for those attending the fundraiser. Olivia studied her swollen picture intently then said “Mama owies”, then in typical Olivia style tried to climb it. We love this girl!!
Kelly and I had a chance to share our stories with everyone, and we spent time with the tournament organizers who have lived with Nephrotic Syndrome and it’s awful side effects for years. It was a really special chance to get to know them a little and I know it meant a lot to all of us to fight this battle together. They raised and donated $7000 in Olivia’s name to Nephcure and were so incredibly kind to us. Full hearts here tonight!!!
Don’t you love Christmas time when you open dozens of perfectly posed, dressed, photographed smiling family photos in the mail? But we all know what actually goes into GETTING that one perfect shot don’t we!! We lay coordinating clothes out on the bed and obsess over each piece trying to make the whole thing come together in our heads. We try to time everything JUST right, with the weather, the lighting, the naps and meal times and last weeks toddler forehead bruise. We bring our best kid bribes in our pocket, rush around to get everyone put together and in the car and become completely undignified and silly to get the kids to take “just one more.” I’m sure you can relate at least in part! But unless you are doing your own portraits like we do, you may never get to experience the outtakes. We have some truly awesome outtakes and some great family portraits I haven’t been able to legally share until now, I hope you enjoy!
I framed this set and gave it to Josh for father’s day last year and made him cry! You’d probably never notice I photoshoped out Livy’s feeding tube in her nose and that Jaden’s hand is holding up her Y.
This next family shoot was a bit more difficult, we had just moved and the 3 youngest were in a serious mood. They knew what we were doing and were trying hard to not cooperate. But we kept it short and sweet and got some favorites, and it didn’t hurt that their Aunt was playing peek-a-boo in the grass between shots!
After years of trying to figure out what to actually do with the digital pictures I have, I think I’ve finally worked it out. There are so many great options for digital photo books out there, but for me I found something to keep it simple that I can do as I go. I’ve been making 12 x 12 story boards in photoshop and saving them, with a double layout for a single event. That way I can easily print them and stick them in a scrapbook for our family to enjoy. These are Liam’s birthday story boards (imagine white boarders around them and you get the idea! ) Also the birthday crown I made from 4 sheets of felt for $1 in under 10 minutes (thank you pinterest!)
Today is my little Liam’s 5th birthday. Yesterday we went on a date to a tiny airfield a few minutes from our home and just played. We brought some dress up stuff, one of his most favorite pastimes, took some pictures, and I held him in my lap on the grass on the most perfect April evening as we watched the planes take off together. I was magical. I am treasuring up in my heart that brief little window of time, because it will very soon fly away. So bitter sweet, him turning 5. As we walked together to the car he said unprompted “thank you mommy so much for bringing me here!” That boy, and these photographs are precious to this mom’s soul.
Just a few notes on the photography side. I guess I’m sort of a slave driver when it comes to taking my family’s pictures. I learned something new yesterday as I intentionally took it really easy and made it fun. I know that’s kind of an obvious lesson, but it’s hard for me to turn off the photographers brain and all the 100′s of ways to compose things and just let it be. But I did it, and I think not only did it make our time together sweet and memorable for my son, but I think it shows in the pictures. Secondly we both had a lot of fun with the props and location in this one. Planning ahead and going the extra mile ahead of time really worked well, and I didn’t spend much on it either. The cute little blue airplane was borrowed from a friend (and the first time I saw Liam playing with it was when this whole thing got dreamed up in my head for him) and all of his outfit was bought at thrift stores for a few dollars a piece. Lastly I know I can take the photography thing to a bit more of an obsessive level than most moms and I just want to encourage you that we all have something that makes us tick, some hobby we love, some creative outlet, some sort of gifting and none of us are the same nor should we be!! Momblogs can be a great source of destructive comparison, to what someone else is doing that you are not, don’t fall into that trap! Just go and be exactly who God called you to be, because THAT is beautiful.
PLEASE TAKE A MOMENT TO READ THIS, it would mean so much to us! Our daughter Olivia has a horrible kidney disease called FSGS. It causes severe swelling throughout the body, high blood pressure and cholesterol, protein in the urine and very low levels of albumin in the blood. All these symptoms put the person at great risk for deadly blood clots, seizures, and what happened to our daughter where the swelling got so bad her lungs collapsed and she spent 3 weeks fighting for life on a high pressure ventilator and dialysis. These symptoms are what make up the disease Nephrotic Syndrome. FSGS is a rare form of Nephrotic Syndrome which causes scaring to the kidneys, is much more difficult to control with medication, and eventually leads to kidney failure. Half the time FSGS reoccurs within hours in the newly transplanted kidney and the fight begins all over again. Last week I asked her Nephrologist if we can try a different drug to keep her in remission. The current med she’s on is working but has caused a secondary condition called Eosinophilic Colitis which is a combination of severe food allergies and symptoms like having the stomach flu ALL the time, which is a large part of why she is fed mostly via feeding tube on special formula. He looked at me and said “She has FSGS right? Well there aren’t options for her, they either aren’t effective or they are too dangerous.” There are currently NO FDA APPROVED DRUGS to treat Nephrotic Syndrome and FSGS. FSGS is the second most common cause of pediatric kidney failure. These patients lives are filled with hospitalizations, surgeries, medications with their side effects, IV drugs, being chained to a dialysis machine and/or feeding pump, and feeling tired, nauseous, and in pain much of the time. We want a cure, but today we would settle for treatment options and an improved quality of life for our daughter and her future. You can help!!!!!!! Nephcure foundation is committed exclusively to finding treatments and a cure for these diseases and to supporting and networking their patients. They are holding a walk in Grand Prairie, TX on June 1st to raise funding for research and to support the families. You can walk with us, donate to Nephcure in Olivia’s name, and if you know of or have a business that would be interested in sponsoring the walk PLEASE let me know!!!!!!