Friday, March 30, 2012

Steps Forward...

I am so sorry that I haven't posted in two months for those of you who faithfully check this... First of all, thank you for still checking up on us! I can't believe how fast time has flown by. We have some big updates that have helped us keep moving forward.

Update One: A huge tree limb fell on the house that we own. This is the house that we hoped would get an extreme home makeover, but the show had its last season and honestly now that Skylar is gone, there are many more people who would need it more than us even if it did have another season. So back to the tree... we decided to file a claim with our insurance. After all, we are paying a ridiculous premium since the house is vacant so we thought we might get some of our money back to help move things forward.

We did get the tree removed and also the roof tarp on to prevent further damage, but the insurance company is being extremely difficult. We're looking to hire a public adjuster to help us fight the insurance company because honestly, I am tired.

I am tired of fighting. I spent two years fighting with medical insurance, medical providers and third party vendors to get everything we needed for Skylar. At least now I have learned to hang up before my blood pressure goes through the roof. I spent a year and a half fighting SMA and fighting for my daughter's life. I am worn out. I am totally willing to hire someone to be on my side and fight for me.

Update Two: My companies are official LLCs now and business has been pretty steady! I feel very blessed to be able to pursue what I love and continue to have referral business. This is part of why I have been MIA. If you want to see what work I've done, you can check out the blogs at Shutter Sweet Photography (weddings, portraits and life event photography) and Skylight Creative Group (corporate photography & graphic design). I have one person second shooting with me at Shutter Sweet Photography and then I have another person helping with the marketing/consulting side of Skylight Creative Group. It's definitely kept me busy and has been a very good thing to keep me getting out of bed every day.

I've actually had a lot of newborn shoots with Shutter Sweet Photography the past two months and have a lot more coming up this month. People have asked me if that's hard, and I would have to say no. Honestly, when I see a newborn, I pray that he or she will be healthy and am in awe to see the strength in different movements. It makes me happy to see that other families will have a normal development experience because I hope that for Kyle and I whenever we decide to adopt. Nothing is sweeter than cuddling with a newborn baby. If anything, it makes me miss being a mom, but I know it's not my time right now.

Update Three: It's spring time, which means we have a garden growing! We're very excited about our veggie garden! Last year, we had an incredible crop production and it was so therapeutic for me to be outside tending to plants and watching things grow and produce. We joke around that our plant seedlings are our plant children because they really do require so much care when you start from seeds. We already have a variety of okra, lettuces, tomatoes, peppers, herbs, and beans growing not to mention some cucumbers, radishes, peas and strawberries. I wish I could add broccoli and brussels sprouts to this list, but something ate them all already... Something ate our okra as well, but luckily I had extra seedlings that I could transplant and keep growing. We love gardening and hope to have a farm some day... Now if we could just find a big chunk of land close by for cheap or get it donated, lol - doubtful in Atlanta.

So as you can see, we've had our hands pretty full. Kyle has been really busy with work, but we're so thankful for his job and how wonderful CNA has been throughout this whole journey. They are a great company and we will always have good things to say about them!

As for us personally, we've had our ups and downs the past few months. In December, I was diagnosed with Endometriosis and had surgery to remove the three occurrences they found. I have been taking medications, changing my diet and going to different specialists to try and manage the intense back pain that has been constant for over 6 months now. It's gotten better, but the disease is not very well known so most everything is trial and error. Not fun. Giving up gluten was suggested because it's an inflammatory and that's seriously been one of the most depressing things for me. I can't tell you how badly I crave bread - a sub, any sandwich, a burger with a bun, a french baguette, a doughnut, flour tortillas, fried chicken, pizza, and all the other yummy foods in existence. Thankfully I can still eat corn and potatoes! I don't know what I would do if I had to give those up... The good news is that the constant pain is pretty much gone but I am still experience horrible back pain once a month - ladies, you know what I mean.

Emotionally, there are times where my heart hurts so bad because of missing Skylar. I wonder what she would look like at 2.5 years old. I try to imagine what our lives would be like if she didn't have SMA. Then I stop. There's no point. I can't change anything. I do have longings to watch Finding Nemo, Cars, etc. In fact, Kyle and I tried to watch Despicable Me together, but we were both tired and ended up falling asleep at one point or another. It was hard to watch it without Skylar around. We've been able to enjoy fun things together though too like the Banff Mountain Film Festival (google it if you've never heard of it and enjoy films of extreme outdoor sports/action) and going to the rock climbing gym regularly.

So, I was watching The Help last month and Aibileen talks about losing her son. Her words hit me, "It weren’t too loo long before I seen something in me, had changed. A bitter seed was planted inside of me. And I just didn’t feel so, accepting, anymore."  I realized that I too had a bitter seed planted inside of me as I think most parents who lose a child do... I feel like I am doing my best to get rid of it, but it's so hard when you see other parents treating their kids like they are just annoying burdens, interfering with their own lives and selfish plans. Everything in me wants to scream at them. Do they not see how blessed they are to have healthy kids who just want their love and attention?! There are other situations that trigger it as well like people wanting a pity party and complaining about something insignificant... I am still learning how to let it go and not get angry. I am thankful for my perspective on life, but it's definitely hard at times. It's easy to focus on yourself, but there's a much bigger picture and I try to keep that in my mind to prevent my own pity party.

Helping others is always a good thing and has helped me keep a good perspective the past few months. There is always someone worse off - no matter how bad you think your life is. We all face suffering at one point or another in life to varying degrees and I've learned the people who come out on top somehow manage to keep a positive attitude and their sense of humor. Another thing that has helped is having a great support system. We will always be grateful for the friends, family and complete strangers who have truly loved us and supported us.

Well, this is getting long (surprise!) but my next post should have some pictures from a trip I plan on taking soon visiting some SMA friends! I am excited to share things that are coming up in April. Hoping everyone is enjoying Spring and the wonderful weather! Peace.