October 14th 1st Shoe Lift
First things first.
Thank You to our family and friends who have sent messages and emails recently. I received numerous emails with suggestions on shoes, places to go and websites to research. It brought a smile to my face. Family that I don't see or speak to often continue to reach out as well as distant friends, that honestly, don't feel so distant anymore. :) Alot of you have been very appreciative of our blog also, which makes me very relieved to be honest. We all know how crazy life can get and how difficult it is to have the same conversation over and over especially when the situation is raw. So I thank you for listening to me through this blog and wanting an update on Norah. I felt a bit foolish this week after my recent post about how hopeful and postive we were all feeling. Of course I am still hopeful, optimistic and excited about the advances that are going to help my daughter, but this week was rough.
Getting her shoe lift as you can imagine wasn't just a 1-2-3 done deal. By Wednesday we had been back and forth 3 times, 45 minutes each way. FUN. Little Miss Norah is just about sick of the car. You adjust, refit and adjust some more until you get it right. And you really don't know if it's right until you get home, play around a little bit and encounter some obstacles. So a note to fellow CFD parents or any parent needing lifts, orthotics, prosthetics, etc.....open up your week and maybe try to find someone close to you. It's going to be alot of back and forth and you are going to have alot of questions. Atleast I did.
Wednesday we went in for a minor adjusment to her brace. As we waited, we watched a documentary on "Winter" the bottle nosed dolphin who lost her tail fluke. Hangar Clinic replaced it with a prosthetic device and now she is able to swim. We watched numerous stories on athletes and other kids with different types of lifts, prosthetics and orthotics. These stories are meant to inspire and encourage people to reflect on their own lives and pursue their dreams. What I've begun to notice about alot of them is that because they weren't "supposed" to be able to do something, they've done it....and then some. A person with one leg doesn't just run a mile in their neighborhood, they become a track star, or a professional swimmer or set a world record. It's an intense desire to prove something, to defy the odds, because you're told you probably won't. It was during this time that I questioned this whole process.
"Are we making the right decision?" I thought to myself. She could go her whole life with a prosthetic and probably do something amazing. Heck she could have her leg amputated and still do something amazing from what we saw in these videos. (Not that we'd go this route ever.)
Or she could just walk with both of her own legs. "Stick to the plan." I tell this to myself over and over.
While watching, as happy as I was for those people and what they achieved, I was just sad. I thought, "I cannot believe this is our life. That we're even sitting in this office. That we're watching these videos. That we're even contemplating these types of procedures for our one year old girl".
I cannot believe this is our life.
Feeling really guilty about her time spent in the car without playtime, I decided after her nap we were doing something fun. No chores, no cooking, we'll just order food and play until the cows come home. I took her to Grammy's Indoor Playground, basically a playroom on steroids. This would be our first adventure in public with her new gear. Norah played in every station and had a blast. Towards the end of our playtime, a little girl about four approached us.
"I like her butterflies," she said, referring to the butterfly design on her brace.
"Thank you."
"Does she have to wear that all the time?" she asked. Not really knowing what to say, I replied, "No, not all the time, just as often as you would wear your shoes I guess."
"Well, I like it!" she yelled.
And at that moment, I thought, "Yep, this is my life. I cannot believe this is my life." And looked up at Him and smiled so big. That little girl will never know what she did for me that day.
I want to end this with something new. Many of you know my struggle with finding balance in this whole thing. I'm processing two thoughts at the same time ALL the time. I seem to always be worried if I'm justified, and worried about what everyone else is thinking. I'm always comparing her disability to a worse one and feeling ashamed for even complaining about hers. Sometimes I question this blog now. I imagine there is a parent out there reading this and thinking, "What is she so upset about? Our kid is in a wheelchair." Or something far worse. It is definitely a cycle. You feel okay for a while or even appreciative of your situation and then it shifts to a constant internal battle when you approach a new step. It would help me greatly if you have any advice, stories,scriptures, or anything for that matter on how you deal with these types of things? Or even if you just have an opinion on this.
If you are a parent of a child with a disability, PLEASE write me. Please trust me with your story. If you are someone undergoing treatment or have already undergone treatment and can help me relate to what my daughter will go through, PLEASE write me. If you know someone with a disability, or even if you don't and you just feel compelled to share your thoughts, please do so. At this point, our journey is beginning and I just want to have open ears and an open heart. Please share our blog with your family and friends. That is how God can bring us new friendships and new sources of support. It is through sharing that I have met some of our fellow "Paley Families" living in other states and countries.
Blessings,
Nikki
You can help the "Paley Kids" through our fundraiser at www.fishingforthekids.com
Nikki, my twin girls had really misshapen heads and it was corrected with over a year of wearing helmets from Hangar prosthetics. For that year, we had at least weekly appointments. It was so hard, getting the twins there (45 minutes’ drive each way), entertaining them in the waiting room, holding them while they were measured, missing out on what seemed like so much because of all those appointments. Oh my, just thinking about it stresses me out!
ReplyDeleteGetting the molds for their first helmets was horrible, they were screaming, it just seemed so barbaric and torturous to put infants through that process. I was sobbing. The girls wore their helmets 23 hours a day. Everyone kept telling me the twins wouldn't remember, and I was taking everything too hard. It just hurt so badly that I wasn't able to be a mother to these beautiful girls, without all these lengthy annoying appointments, and this ridiculous big plastic helmet thing always in the way. One of the twins was trying to give a babysitter a kiss, and she leaned forward and her helmet chipped the babysitter's tooth! I can’t tell you how many times my husband and I got knocked (hard) in the face or somewhere with this hard plastic helmet on these tiny babies.
We couldn't go anywhere without people staring, pointing, saying the STUPIDEST things. I can't even believe how ridiculous people are. I learned to say, "if you are going to stare, please say hello” I say that to my kids now when we see a person who is different in some way.
Now that the twins are 7, it seems like a distant memory (I know Norah's journey will be much longer). One regret I have is I didn't take hardly any photos with the girls in their helmets. That is who they were for almost a year, and I have only 2 photos. Looking back, it was actually cute, and I am bummed that my own (understandable) disappointment at the time prevented me from capturing the memories of it. I would only take photos of the twins when they had their helmets off.
One thing that overshadowed the entire helmet experience with the twins was that we also lived with the fear that the girls were going to get placed back with their birth family. We were their adoptive family, but as things go, the delays were unending, and for their entire first year, there was always the fear something would fall through and they would be placed back into the unspeakable conditions they were born into. I never processed what we were going through regarding their helmets, and all that entailed, because I was barely able to even breathe, I was just trying to get through everyday holding them and keeping myself together in case the unthinkable separation were to happen.
So when I look at your situation, I think it is a really healthy and actually beautiful thing that you have the emotional “bandwidth” to process through this experience. Meaning, your blog, your thoughts, your emotional processing, is such a hard road for you right now, but you are doing all the hard work now, and there is lot of peace and joy waiting for you a little further down this road. When I see Norah, my heart fills with joy, because she is such a beautiful little girl, born into such privileged circumstances, so much love, and parents who will and can do anything for her. I look at her and I just thank God that sometimes it just works out so right, that her mental and emotional health is all going to be ok, because she was born into and being raised with love.
I don’t know why circumstances of parenting, of life actually, have to be so painful. I just know you are really amazing, and you are going to come out of this experience so wise, and with so much personal growth. I do know that I wish you could give yourself grace and know that everything you are feeling, questioning, thinking, is completely ok, and completely right. There is no “wrong” way to feel. I am so happy that you are exactly who you are, and I know God will use ALL of this for good.
So as the mother of a kid in a wheelchair, I support you. Whatever the circumstances, when it's your kid, it's really hard. You're doing a great job helping other parents with this blog and showing the honest of your feelings. Sadness and gratitude really do live in this crazy world together. I'm glad to hear Norah is doing well and I look forward to following her progress. Heather
ReplyDeleteThank You Heather for your comment. :) My friend Sharon Beasley is actually my husband's cousin and said you guys were bff's so any friend of hers is definitely a friend I'd like to have! It means alot to read what you wrote. I can't tell you how much it helped me. I want to give you my email....it is nikkihowes.benefits@gmail.com if you are interested in talking some more? Nikki
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