We have "twins" in the house again. Happy birthday to our beautiful, sweet, and sassy girl!
Nora Jane, it is an honor and an enormous privilege to be the ones you've opened your heart up to.
We can't wait to see what new miracles God does in your life this year!
One year ago today we caught a red eye flight to Eastern Europe to meet our babies for the first time, filled with disbelief (is it really here?), excitement, fear, and dread of the long flight ahead, wondering if our kids would be anything like we imagined (they weren't ;)), and praying they would be ours.
We sat bouncing on an exercise ball, her on my lap. Giggles of glee came from her mouth as she closed her eyes and melted into me. She always melts in my arms when she is happy, nuzzling her body against mine.
It was a sweet few moments being able to delight her little heart.
We worked on some exercises on her bed before nap and she laughed as she did them. I couldn't help but think about what a joyful little girl she is and how many times I've taken away her joy.
How many times have I squelched that joyful spirit with my words and attitude too harsh? How many days has she avoided making eye contact because I was impatient and angry yet again with her sensitive soul? How many times have I torn her down instead of building her up with words of encouragement when we are working on making her body stronger? How many times have I forgotten that everything is harder for her and assumed the worst of her? How many days have I demanded, demanded, demanded her to work and neglected to snuggle and play?
Photo credit: Jenn Keener
Each day asking forgiveness again and again. It's midnight and she's curled up in my lap, nestled in close, as I rock her to sleep after another screaming fit, the calm after the storm, and I seek her forgiveness and the Lord's for my angry response. I kiss the top of her head and whisper the truth both of our hearts need to hear, as her eyelids are heavy and she falls asleep...I will always love you. Always, always, always. There is nothing you can do to make me stop loving you. There will never be a time when I don't love you. No matter what you do. No matter how mad you get at me. No matter how much you push me away. No matter how mad I get at you. I will always love you. Always, always, always.
Grace. What our hearts need to hear. I can't stop loving her the way He can't stop loving me. I won't stop loving her because He won't stop loving me. He forgives me again and again, and so I need to forgive her again and again, to show her grace. I need to ask her forgiveness again and again, and I find grace there waiting.
And when she smiles at me the next morning, I know that I am drinking more deeply of grace in these moments than she is. Jesus, Grace Himself, tangible in the smile of this little one, who says with her smile yes, Mama, I forgive you, yes, Mama, I still love you.
"Is she walking?" We get this question a lot about Nora. The short answer is no. No, she is not walking...yet. We don't know when she will walk.
Some kids with cerebral palsy never walk. Some walk quickly. Some are walking for four years before they no longer need a device assisting them, like a walker or gait trainer. Some never walk without a walker or canes.
We, along with the doctors and therapists, see nothing that will hinder Nora from walking long-term, but it is going to take a while to get to that point.
Her gross motor skills are still very much that of a baby. When babies are born with cerebral palsy, they (most of them) don't explore their bodies the same way other babies do. They don't reach up in the air to look at their arms and move their hands. They don't roll over or lift their heads up. They don't kick their legs. They need parents or early intervention therapists who will help them explore their bodies. Nora never had anyone to push her to the next milestone or help her explore what her body can do.
In a lot of ways, we're starting from back at that point. She can roll over, bear weight on her legs if she has something/someone to hold onto or a wall to lean against, kick her legs while laying, take some steps while supported, along with some other gross motor skills. She can sit up for a little while if I sit her up. She can reach for objects (she can reach across her body now!). She can hold her own cup and hand me her cup when she is done and I ask her to hand it to me (Guys, she can hand me her cup! We've been working on this for weeks and two days ago she started doing it on her own! This is BIG for her.)
We are working and struggling to overcome anxiety and fear, laziness, learned helplessness, and self-entitlement that years of trauma and years of laying in a crib or stroller all day have led to and brought out in our little girl's heart. Our girl would be content to just lay all day and have us do mostly everything for her. Physical therapy sessions can be and most days are a battle. Hard work is well...HARD. And she doesn't want to do it. She doesn't want to be pushed to the next level. If I laid around for five and a half years, it would be awfully difficult for me to want to work after that.
Nora doesn't see the joy that's to come when she gains these new skills. She doesn't know that the more she works, the easier these skills will become and the more freedom and control she will have over her life. We push her to persevere because she has no desire to do it on her own. We push through the tantrums and body flailing. We make her work because we love her.
As for where Nora is at right now, the big goals right now are to
Build neck strength and stability through keeping her head in neutral position
Build shoulder strength and stability
Building upper body stability is the main goal. Which means LOTS of belly time.
Then core strength (which she already has a decent amount of since we focused on core strength for so long).
Then leg strength and then mobility. She will be gaining some leg strength, now, through her stander.
These things seem so simple to you and me, but to the body of a child with cerebral palsy, these stability exercises are strenuous and exhausting and do not come naturally. We work to do the exercise below on a daily basis at home.
This is what Physical Therapy looks like:
Totally thrilled to be doing this ;)
On her belly, elbows under her shoulders, hands open, head in neutral position-
we work to hold this position for at least 20 min.
Sideline on her right elbow- weight on right elbow, try to keep head up, hold for 5-10 min and build over time
Sideline on her left elbow- the hardest one of all. Try to hold for at least 5 minutes. Work to hold head up.
The first position on both elbows is getting pretty easy for Nora, but sideline is the difficult one-- especially on her left elbow. Sideline on her left elbow feels to Nora's body what a marathon would feel like to our bodies. It's ridiculously hard because that arm is the weakest and tightest part of her body.
We do some other work, like letting her explore what her body can do while she lays on an exercise ball and working on hands and knees crawling position (quad) with a small exercise ball under her belly, but those are not the main goals.
For months before starting formal PT, we worked on core strength because isn't core strength huge? Who would have thought neck and shoulder stability were just as critical? :)
"Look Ma, no hands!" She experiments with no hands more and more.
Love seeing her confidence build! (Pic taken a few months ago)
Look at those legs holding onto the table! She is using her hamstrings!! When Nora came home, she didn't even know her hamstrings existed. If she sat on the edge of the table like this then, her legs would have just floated out in front of her. She is gaining so much control over them. It's so exciting watching her brain discover new things!
God is redeeming Nora! We are so thankful that He sustained her body all those years in the orphanage!
This little one's GLOW-IN-THE-DARK wheelchair arrived, after ordering it back in April. The wait was worth it because this girlie is overjoyed about her new chair! Nora can see everything around her better, without the walls of the stroller blocking her view. It also makes her practice holding her head up and sitting straight up, much to my delight. And it helps Mommy and Daddy not feel so guilty about using Nora's handicap placard (we're still getting used to that one). ;)
Nora's new stander also arrived at the same time as the wheelchair. She is strapped into the stander, as you can see below, so the stander does some of the work for her. But standing in it will help her build a little bit of muscle and build bone density to strengthen her bones from the lack of weight bearing for years (crawling can also build bone density, but she's not able to hold a hands and knees position yet).
There are so many perks of having a stander! Nora gets to see what the world is like from a new angle and get used to the feeling of standing. One of my favorite things about it is that we can practice her occupational therapy (OT) skills. When she is in her booster seat, she has to work hard to focus on sitting up, which makes it difficult to work on other skills at the same time. The stander, on the other hand, is holding her body up for her, so she is free to focus on the fine motor tasks at hand, sometimes much to her dismay. ;)
Below you can see how she is strapped in. (She's not quite standing right in the pic (leaning too much on her left leg)). Nora is wearing her new(ish) pink and purple Ankle Foot Orthotics (AFOs). These keep her ankles in proper alignment when she stands, instead of her ankles pronating (or turning) inward. When Nora stands without orthotics, her knees overextend backwards, which is bad because then her muscles aren't really doing any work. Her joints are bearing all the weight when she overextends her knees. Her amazing Orthotist made her AFOs in a way that forces her to bend her legs a tiny bit when she stands, eliminating her tendency to overextend the knees and allowing her muscles to do the work, instead of her joints. Many kids have trouble getting used to AFOs, but Nora seemed to like them from the start, which was a relief!
Hooray for building muscle and leg strength!
We are thankful to God (and the insurance companies ;)) for providing these new tools to help Nora grow and enjoy everyday life!
Sorry we've been MIA. Life has been very full- many doctors appointments, therapies, some challenges, and lots of giggles from our giggliest little boy. We are working to update more regularly, but please be patient with us. :)