|Last fall on our walk|
Thursday, April 3, 2014
I haven't shared a lot of Jubilee stories since she has been home the last two and a half years. To be quite honest, she has had lots of challenges and I didn't want the kinds of things I would be reporting to be simply negative. We weren't seeing lots of breakthroughs. There were many long, long days.
But today, I am sharing. I'm sharing because today has been combined with several days the last month or two of big breakthroughs and todays was pinnacle for her. We celebrate it with her as it does bring relief to our hearts too but nothing like seeing her experience THIS success.
For those who don't know, Jubi (pronounced JU-Bee) has spina bifida and hydrocephaly (with a shunt). We knew she had much difficulty maneuvering her body and seemed very stiff and rigid in her upper body but it wasn't until Cephas joined our family that we could see such a marked difference in their abilities to use their upper bodies.
Our sweet girl (she really is!) can sound a bit more like a truck driver when she is frustrated and it seemed anything asked of her that was beyond her comfort zone (that means, effort was required) would turn into screaming fits, name calling and even throwing her head onto the tile floor. I knew she was able to do so much more, but the inner strength and motivation to do it was needing to be found first. That's not something that can easily be bribed or talked into with this one.
I knew I had to have her heart, but I also knew that she was smart enough to stay weak and unwilling. So these couple of years have involved lots of tears. LOTS of tears. Lots of prayers. Lots of do overs. (That last one times 100).
"Jubilee, I want you to know what you CAN do. I want you to see what I SEE! And the only way that will happen is if I let YOU do it." Those were often taken as fighting words and as rejecting words. Those words had to be wrapped in all kinds of other words but they had to be expressed and they needed to be enforced with love.
Before Christmas one day, she was particularly angry and had used bad words. She wanted to put herself to bed but she was in her walker. I told her if she wanted that she could do it herself. By golly, having never done it before she figured a way to get herself into her room and turned around and up into her bed getting her braces off. And- she did it quickly! This was the beginning to a whole new way of how I began to approach most everything with her.
When she was given a paper to do her handwriting, she would write backwards. I learned to take her finished paper and without reacting, just say, "Oops, time to redo." She thought certainly I would become exhausted at wasted paper. But she didn't realize I was aware that being able to write backwards took a lot of smarts. After the tenth sheet, her paper was turned into me, every letter forward facing. I let her pick out her sticker and hang it up. I let it be something SHE was proud of and not about getting my approval. I wanted her to know I was pleased but I really want her to see her possibilities when she doesn't give up.
Bit by bit- task after task, screams became less intense, not as long and soon the efforts she was putting into her tantrums she began to put into working her body. Her challenges are greater than Cephas. He has great fluidity in his upper body. She is much stiffer and it takes her twice the effort to do what he does. She has one leg that doesn't bend and is hyper extended which often gets in the way too. She's got reason to be frustrated.
Then- come February she decided to shock us. She knew Cephas was doing his own catheter and I found her in our bathroom doing her own! HUGE triumph! Monumental.... I knew then that this sassy pants was more capable than any of us imagined. And her patience had been growing....along with her self confidence and trust.
But the final HOORAY came today. She has had a love/hate relationship with doors. Her last hurdle was to figure out how to go in and out the door. She had been watching Cephas do it effortlessly for months. She was still caving into her scream fits and this morning she let it out...for the last time at that door. She pulled and prodded and grit her teeth. She winced and glared and reset her focus some more. I LET HER GO FOR IT. She was regulated. She knew what she was after. I was watching her move into productive determination. And this is what she learned to do today:
My children are each unique with their own trials and they test us. They cause us to have to press in to love, patience and endurance. But then there are these days, beautiful breakthrough days, that we get to celebrate with them if we will stay on the journey and see them through. It's tough to be both the soft place while being the one who presses them out of their comfort zone. But that is what God does with us too. He doesn't want us to get so cozy that we don't grow, and move into all He has for us. He doesn't want us to be satisfied with lukewarm faith. He sees in us all the things we don't see in ourselves, and when we pray, He is faithful to press us into growing up into Him where we are most safe. It feels vulnerable to grow. Success is found in our mistakes too.
I think Jubi is beginning to have these glimpses of truth building up in her, and as her mommy, I am so encouraged. Thank you God for walking these days steadfast with me as her mommy. They are good, meant for good and goodness will be the fruit from the trials.