I don't even know where to start. This is going to be unorganized and unedited because honestly, that is where I'm at currently.
I couldn't figure out if this post was going to be written for friends and family following our journey or to future parents and patients looking for answers and information. Again, unorganized.
Her 1st surgery is like a train coming head on. You can't stop it. We have spent the last two years living life as anyone else with a two year old would. We truly have not focused on her disability the way some people might. Sure, it's in the back of our minds, but the keyword is "back". I can remember the conversation Rich and I had when she was just a baby. We agreed, we would not do that to her, or to us. We wouldn't spend endless amounts of time on forums or Google, crying over it or letting our lives revolve around it. We were successful. And I do encourage this to any parent of a special needs child. You don't want them thinking this is all they are, that this is what makes them who they are. There are a number of things that make up a person, not just one thing. And honestly, this wasn't something we had to work tirelessly at. It was quite easy actually. She does tons of things not despite her condition but simply because she's two and that's what she's supposed to do. She does things pretty darn normally, with the exception of having a brick on her left foot. :)
Lately though, it's here everyday like an annoying mosquito. Several times I've apologized to my husband for talking about it so often or crying to him about it. He has too. Surgery is just days away now. After a long, heartfelt, eye opening conversation with my cousin, I realized, this is okay. This is okay because this is our life right now. She is about to not only have surgery, but major surgery that will mark the first day in a very long, painful journey for her. It signifies a lot for our family. It is the start of something we have been anticipating now for two years since God gave her to us. In our conversation I explained to her how important it was to me that we were never viewed as "attention seeking" or "self seeking". We discovered in our conversation something I had been praying over for a really long time. I was able to talk about scientific details and "surface" details with people, but I very rarely shared much more. It took me months to even share the slightest detail with the women in my Bible Study group. I realized after praying so hard for God to give me the courage to ask people to pray for her, that it was because of this fear. The fear of people judging. Maybe they would think I wanted attention. I cannot stand this quality in people and I cannot stand it in myself if I find it there. There are too many people out there like that. I don't want to share what my daughter is going through and will go through in efforts that you'll feel sorry for me. I don't want to share a post or a photo of her or an update on her progress for attention seeking reasons. If I share something, it's because I want your support and most importantly your prayers. Or I want you to laugh at how insanely cute she is on a 4wheeler wearing an elephant costume. This past Wednesday, I truly realized that. I broke down in a room full of women at my church. I knew it was time. All I could think of at the time, was. "Gosh, I hope they don't think I'm a big baby". But they cried with me. So many women teared up as I shared my pain with them. My fears. I voiced things I hadn't voiced out loud before. The acceptance that I felt that day, confirmed my fear was completely irrational. They came over to me and every single one of them prayed over me and my family. It was probably one of the most memorable moments of my life. I left thinking, "what were you so afraid of?" They knew my heart. And that day, I knew it too. It's a very freeing feeling, to know your heart, to know that God knows your heart and really that's all that matters to you. I know my intentions with this blog now and with her entire journey.
One thing I'm excited about is being able to go back and read these and witness growth. I want her to see it also. I want her to see what she overcame. I've already done it actually. I look at what I'm writing now as opposed to what I wrote when she was born and I know my perspective is entirely different. It amazes me how God can take your trial and use it for something that will strengthen you. I pray that this first surgery does just that.
When we arrive and they take take her back, I will post an update with details for the surgery and when she will be out. For now, we are expected to do pre-op appts Tuesday, surgery early Wednesday morning and stay in the PICU after that until they feel she's ready to move. We will also know during surgery if he ended up doing her knee also or just the hip for now. For our fellow PFFD'ers, I am thinking of writing a post specifically with surgery details, packing lists, things we would do differently or encourage and tips we learn along the way for other Paley patients and parents.Or you can do what I do and call every parent you can get your hands on for advice. :)
I'd also like to give a really heartfelt thank you to all the people who have been so supportive during this whole process. Thank you for praying and caring about our family. Thank you for reading. Thank you friends for your text messages checking in, thank you for your gifts, cards and meals, thank you for your emails and messages, thank you to my Paley Moms and Dads for answering all my questions and being so available to us, thank you to River Run Church and my awesome ladies in Bible Study, our neighbors who rock LBV, our family for being so involved and helpful with all things, the Oviedo Moms Club, all of Rich's colleagues and fishing friends and everyone around us who is praying. Thank you. Keep praying!!!
Love to all,
Nikki
