365 days

365 days ago I learned what ACC(agenesis of corpus callosum) meant. Since that day I was put in a place I never expected to be, but now, can't imagine being any place different.
Kissing Parker Ann good night tonight was very different from what it was a year ago. I am so grateful, and realize how blessed we are. I feel secure and at peace about her future. She is the happiest little girl. Her light, smile, and happiness is her gift she shares with all she meets.
At the end of this month, we have spent 16 weeks away from home attending Conductive Education intensive therapy. Last year Parker couldn't hardly track a toy with her eyes, little alone reach, roll, sit up, crawl, walk, talk, and follow simple instruction. I am over joyed to say hope lives in Parker. In her own way she is now doing all of these things. I find Parker's determination for life so admirable.
Clay and I are overwhelmed with gratitude to our Father in Heaven for the miracles and blessings that both of our children bring to our lives.  I know Vander is the big brother Parker Ann asked for. I am learning to celebrate the journey, it is just as perfectly imperfect as we are. Good and bad. I wouldn't change it. I am happy to know that no matter what happens in life, I have good company to experience it with. Thank you all family and friends for the love, prayers of hope, and support we have undeniably seen in our lives over this last year.
Love,

The Vrouw

Morning of the MRI one year ago. 

Practicing high kneeling and grip strength all while enjoying the little girl in the mirror.

At the Fredrick Mijer Gardens

Today marked the half way point for our spring session here at CLC. Parker is rockin it! She puts so much effort into every day she is generally pulling down hard Zzz's by the last ten minutes of class. Her happy go lucky attitude makes it easier to wake up each day and bring her back for more. Simple motor functions you and I don't even think about, is a great struggle Parker has to practice, practice, practice to gain mastery. CLC is helping better calculate movement and gain awareness of Parker's  body relative to the space and environment around her. I see emphasis on balance this session.  I am witnessing a maturity within my sweet girl  that is beyond her years. It's crazy. In her countenance I see that she knows the hard things are worth it. That's why we are here.
This week what stood out to me in progress was her ability to isolate and differentiate body moment. (Ex: whiling lying down, holding legs and one arm still, while other arm is responding to verbal cues for up and down movement. Or legs still and grounded, where out stretched arms are  brought to midline for clapping or clanking toys together). Given Parker's current skill set it is hard to quiet the body and refrain from involuntary movement. I have noticed it less this week.
Parker loves the social aspect of class. She loves the social accountability. When the teacher is looking for someone sitting straight, etc, "oh I see Parker sitting tall!" Thats the moment you see that little girl flash a proud smile that covers ear to ear. She may be a little bit of a show boat... There are two other little one year old  girls with  their moms that make up our class. I'm pretty sure we're the cutest Parent/Child class CLC has ever had!
I can see an improved stamina and trunk  strength in Parker this session. She is gaining the skills to practice standing  longer, walking  longer, and SITTING  UP longer. I am so happy that ever  elusive ability to sit up is now a reality with  great success. Prayers have gotten her here.  If Parker  maintains focus she can sit unsupported for one to two minutes. If she has her back support it can be more like 5 minutes. It has been so fun to watch a new world unfold as she sees it literally from a different angle. Coming into mobility is so fun!

-The Vrouw

This picture was taken the last ten minutes of class on Friday afternoon. Parker played so hard the weekend couldn't wait ten more minutes. 

Shift, Lift, Step. Walking across the room.

First week of school... Huge CHECK mark for complete! Dancing in place and a big air fist bump for Team Shumway! Tuesday was Parker's first day back at school at Conductive Learning Center(CLC). CLC is the same program we attended in December, but this series will be four weeks instead of three. For Parker this week was a great jump start to waking up those neurons and diving into  the familiarity she has come to know and love in the music, and activities at CLC. The theme for this session is, "my very busy body." A line from one of the songs we sing says, "I have a very busy body, a very busy body, that goes everywhere with me...." Parker couldn't be more ready and thrilled with the theme choice. She loves finding her nose, using her hands to play peek-a-boo, and mom kissing and tickling her toes. Her modivation for calculated body  movement and drive to explore the world around her is like a drug to me that keeps me coming back for more pushing me  to do all  I can in her behalf. On top of that,  her joyful countenance and infectious smile sure makes ugly and stressful days, or anything for that matter, worth it. We are still implementing use of the potty from last session and seeing success there about once a day or every other day. She is a potty girl, She is so proud when she knows she's got the job done. Haha. The CLC director mentioned Wednesday that she could tell Parker has been playing hard since last session and she is making fantastic progress. She even went far enough to jokingly say with all of Parker's now obvious jibber jabber that she didn't have last session,  she is a regular trouble maker with all the talking and verbalizing during class. This is a happy time of life with Parker. The Lord has blessed us to have found a  routine that works for us  and embrace the  new normal we call ours. We are fortunate and blessed for the sweet association and support we feel from family and friends.

-The Vrouw 

Pictures of Therapy Time

Brother is always there to cheer and entertain his sissy during PT.

This is Julia, Parker's favorite doll. She has been there to motivate Miss Parker when she has needed it.

Standing up, then sitting back down.

Game face for 8:00am therapy, because wow, it comes early.

Sitting at her table and drinking the bottle.

YES! Clay made this therapy stool for Parker and it's amazing!

Working on balance, and we love it when brother gets to help.

PT at home.

The If/Then statement
 IF you would have told me a month and a half ago Parker would be able to pull her legs up underneath herself into the full crawling stance you may have gotten an odd laugh/cry combo out of me. I imagine my reaction would have made you feel uncomfortable and and pretty unsure what to do. haha. I think my reaction would take at least 30 seconds. A laugh would come out of me because I'm pretty sure One, I wouldn't have hardly believed you or known how to react to that kind of news. And Two, crawling is such a hard skill taking so much trunk control and strength which is one of Parker's greatest weaknesses. I have had times where I've wondered if light at the end of the crawling tunnel truly existed, or if since we have worked so hard already at crawling we now get the option to just skip crawling and go straight to walking because most days that almost seems like an easier skill for us to gain. I have known Parker will eventually crawl, but I never would have thought it would be here this soon.
 Having said that, the crying portion of my reaction... Everything Parker is learning to do is a miracle and blessing. I feel so blessed and grateful when the Lord lets me witness it. Sometimes its such a spiritual experience I sometimes feel like I can't believe I am here. I can't help but think of the feeling a parent has for a child when they want something so painfully bad for them, whether its an experience, skill, characteristic, or materialistic thing? Well that parental yearning is overwhelmingly complete when those little moments happen in my living room right before my eyes. The miracles I pray for every day I see happening when Parker pulls her legs completely underneath herself into the full crawling stance. The moment freezes me and I think, "this is REALLY happening right now." Its then a silent prayer of the heart in those times.  
It's crazy to think we are praying to be able to crawl! Four months ago we were praying to just track and then grab a toy. I can't believe this our experience. I sometimes feel selfish because I know there are those who are less fortunate and unable to have the experiences or opportunities to learn, and acquire skills in this life like Parker, or myself for that matter. It reminds me that beyond myself, there are those in heaven and on earth who are rooting in my family's behalf. It reminds me that there is a God, and He is aware of me, and the needs of me, and my children. It reminds me that I am enough to be the wife, and mother Heavenly Father wants me to be. Reminds us on a hard day to keep going. And so hey, sometime a little reminder never hurt anybody! #youareenough

-The Vrouw

I tell you what it has been nice to be home and to have our suit cases unpacked AND put away, but even better than that is being able to apply what we learned at camp! It has been SO fun to be home to find our new routine and witness the little missy's improvement. The real application in our every day is there. I knew I wanted to go her camp to learn things and start things out on the right foot so to speak, but I didn't realize how much of a dive into a new lifestyle it truly was, and truly how happy  and blessed we are with the shift.
For the few weeks we have been home we have had doctor appointments Parker passed with flying colors. The appointments were  3 month follow ups with audiology and neurology. Parker weighed in at 18.2. I was extremely grateful for the gain in weight. Three months ago she weight 16.5, and had zero weight gain. So so so happy to see the scale move a couple notches. Additionally she  completed a blood draw for genetic testing. From the testing we are hoping to find out if ACC is genetic and if any of Parker's future siblings will or could have chances for the same brain malformation (this testing takes a long time and we won't get the results for this for approximately 2 months).
On a side note, we are pretty excited to announce we are heading back to camp in March. Parker is absorbing, learning, and doing so much right now Clay and I feel it is worth it to go back so soon. New brain paths are being created, and Parker is in that prime time age and stage for neuroplasitisty.  We know we are so blessed to be able to be on this adventure with Parker, and are so grateful for cheerleaders in our lives who never stop rooting for Team Shumway. 

-The Vrouw

The boys had left to the store so it was just Parker and me playing on the floor in the living room. Parker and I had been there a while mixing back and forth play with therapy. This particular session we had been playing extra hard with walking and crawling. Parker had been doing a great job, she was keeping motivated and wanted me to push her more. I could tell she was getting tired. In an effort to give her a break I sat her in my lap and began to sing to her to distract her from what she had been doing. The words that came out of my mouth had a very new, very real, and very literal meaning this time. My mind and soul processed them differently.

A I am a child of God,
And he has sent me here, ...Yes you are, and yes He did. We were told  a long time ago you would come.
Has given me an earthly home
With parents kind and dear. ...As your parent every day is hard, and it tests me. But I am trying my best because I love you.

 Chorus
Lead me, guide me, walk beside me,...Yes, yes, I  literally am. I am here. We are doing it right now. We will "shift, lift, step" our way to walking and beyond!
Help me find the way.... As long as you need it, I will always guide your little hands to open and close, or to find that little mouth with that spoon.
Teach me all that I must do. We are learning together, I think I am learning more from you. I see the joy in our journey. Its beautiful. Wow, I love you little sweet pea. I can't believe you are MY daughter. 
To live with him someday...You are that special. You'll make it baby, don't you worry.

-The Vrouw
"I am a child of God"
 Words: Naomi Ward Randall,
Music: Mildred Tanner Pettit,