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. 

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 

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,

12-11-2015

 

Parker loves walking

crawling to knock down the pins

Its potty time

The Ronald McDonald house hospitality was humbling

Santa even found us at the Ronald House

Wednesday marked the half way point of Parker's school. We finish a week from today. Things are going beyond what we expected. We are having so much fun, learning tons, and playing so hard. I am learning what Parker is doing, and what she is capable of doing, is nothing shy of miraculous.  Although therapy for three hours a day Monday through Friday  for a 1 year old is no easy task. Both of us girls have had our share of tears, wining, and times of frustration and exhaustion. When I am falling to anxiety and insecurities, I find the moments where I feel the faith, love, support, and prayers of others around me like a blanket of rejuvenation and hope. Like an added measure of love from the Savior.  Peace, knowing the Lord is aware of me and the little family I have stewardship to. Aware of the motherly mantle every mother frets to fill for her children.
I am so grateful for caring therapists who think about Parker beyond the moment we walk out their door.
This experience is one I would never trade. So blessed to have a mom and family who make the best cheerleaders!
-The Vrouw

Ready or not, Here comes Parker

First day of CLC school for the both of us.Woot! (Photo taken day after post)

We have arrived safe and sound at the McDonald house, and we are ready for our first big day of boot  camp tomorrow. Being a girl of little words, but many sounds, I can tell Parker  knows what we are here for, and she has definitely brought her game face! So excited and feeling so blessed!!! 
-the Vrouw 

11/26/2015 

Since learning about ACC has become part of our every day, I wanted to share  a reliable source of educational info about our Parker Ann and ACC. 

http://rarediseases.org/rare-diseases/agenesis-of-corpus-callosum/ 
-The Vrouw

Beyond perfect! 

11/24/2015
So things the last month and a half have been kind of crazy around our house. As our Thanksgiving letter said, it was really the first we publicly said Parker has Agenesis of Corpus Callosum (ACC). I had gone back and forth over the last month and a half over whether or not to share our story. It became an internal struggle that I didn't know the answer to, insecurities of my own I didn't know how to handle,  so eventually when it came time to write our Thanksgiving letter, something I was dreading, I told Clay to write it.
After the family letter was written, I couldn't help but agree more with Clay in the decision to share with friends and family. The overwhelming amount of love, support, fasting and prayers in our family's  behalf,  I selfishly now can't imagine being without.
As a parent I find it a fine balance between allowing your children to grow and develop at their own pace, versus encouraging your children, and sometimes pushing their comfort zone beyond what they would choose on their own. I was finding myself in this place with Parker. 6,7,8,9 months old she wasn't sitting up. I knew some children take longer to develop these large motor skills so I couldn't bring myself to push her more. I try to enjoy the moment my children are babies, I fear it goes too fast in the first place. So not trying to force the next stage,  in the back of my mind, insecurities and worry about Parker's wellbeing began to creep into occasional thought.
10 1/2 months old, I  found myself with Parker in front of a  nutritionist telling me we needed to change Parkers diet. Later that evening when telling Clay of the events of the day with the nutritionist, I couldn't bring myself to agree and say her diet needed to be changed. I could feel something was going on, but diet wasn't it.
11 months old we were with my pediatrician for a wellness visit. Not meeting milestones like sitting up, rolling over, crawling, and ability to swallow progressive baby foods were all things on my mind. Growth for Parker in height was good, I had seen it in the change in her clothes, but weight, I hadn't realized, she had not gained a full pound in three months. Talking about lack of weight gain  was that overwhelming moment people talk about,  the feeling that I needed to  pursue the concerns I had for Parker. Immediately. I needed to get aggressive to seek out further help for Parker. My pediatrician suggested we run the gamut on blood testing, urine sample,  and meet with a GI specialist. A stomach renching Failure to Thrive was what I saw on the doctor notes... A long week later, the blood tests came back normal and the appointment for GI was set. September 24, 2015 we had our first and introductory visit to Children's Hospital Of Philadelphia  (CHOP) as we met with the GI specialist. He recommended a referral to the CHOP  neurology department just to make sure nothing was wrong, introduce Pedisure, and consider a swallow study with their feeding team thinking there might be a protein or something that her body is unable to absorb.
From September 24th to October 5th was the scheduled time between our initial appointment with neurology. I had the prompting one day to call and see if there had been any neuro appointment cancellations before the 5th. A great blessing and great surprise, there had literally been a cancellation made the phone call before me! We were now booked to meet with neurology October 1st.  This time of waiting and the unknown, I found to be the hardest. It was eating Clay and I alive.
Clay unable to get away from school, It was once again me and the kids heading to the appointment. Our dear neurologist confirmed my concerns with lack of milestone accomplishment, lack of weight gain, swallowing difficulty, and added hypertonia/hypotonia. I was expecting it would be a referral back with some kind of GI issue and that we would be sent out the door with a clear bill of health from the neurologist. Instead of a clear bill of health, we were sent out the door with a clearly needed brain MRI.
 Upon leaving our neurologist told us scheduling for an MRI was usually at least one to two weeks out. I made the phone call to the radiology department while we were making the now routine 35 minute drive home. Sure enough, the call just before me had called to cancel, so of course they could get me in the next morning at 8:00am. #Blessings!
Thankfully Clay was able to take off from school for the morning of the MRI. We had Vander to his friend Mali's house before 7am so he could spend the day with friends instead at the hospital. By the time we found the hospital building and were able to find the under ground parking my nerves were shot and my anxiety was through the roof..and the party hadn't even started yet! Parker did have to under go sedation for the procedure. We were told the actual MRI imagining took about 45-50 minutes, but including checking in, and sedation we would be in for a 5 hour experience. It was something I don't to ever do again. After the MRI was completed and they let us back into the room, laying there Parker was the most beautiful little sleeping beauty I ever saw. There was a peacefulness about Parker, about the whole room. I felt our spirits talking, Parker told me she was just fine while I couldn't be with her when she was away for the MRI. I stressed that. It helped me breathe, and come to a little perspective in life. This life is the Plan of Happiness.  No matter our earthly circumstance, old, young, we chose for it, no matter what was going on with Parker, She chose for it, and as her parents we chose to do all we could to best help her make her best experience.
That day was a hard day. As we were pulling into the drive way at home, the phone rang. We were just getting home from the 5 hour day at the hospital. It was our Neurologist calling with the results of Parker's MRI. We turned off the car and sat in the driveway as we listened to the doctor tell us what she saw of Parker's brain. I don't really want to revisit the drowning rush of emotions I had. Clay handled it better than I did. Looking back, we were in such shell shock when she asked if we had any questions we were speechless. After we hung up the phone, Clay took Vander inside and I got Parker out of her carseat, cuddled her there in the car, and cried. 
Our family is forever different, forever blessed. It changes the things in life we value, celebrate and define as important. It changes us as parents, and Vander as a sibling. Compassion comes to mind. I feel like since learning of ACC, it just helps me better learn and understand who Parker Ann really is. It gives me a glimpse of how Heaven must feel about the sweet baby I kiss good night every night. 
So there we were, MRI results in hand, and it was October 2. We weren't even suppose to have our first neurology appointment until October 5th, little alone some kind direction and diagnosis. We recognized so many blessings through out that 3ish weeks. 
We continue to see so many blessings in our lives as we begin this new journey. We have wonderful doctors, resources, and opportunities here in Philadelphia. Parker has PT, and OT 3-4 times a week. Appointments with medical specialists have slowed to only one here or there, not 3-4 a week. In that first month since diagnosis me and the kids attended over 22 appointments in 30 days. When I realized that, it was a moment for the first time that let me say, "...okay, here is your free get out of jail card for today...its alright that today is hard. Its okay to be real to myself that I am not handling it as well as I think I should. Or I understand and its okay that my 2 year old just had a major melt down in the store, we can cry it out together. He has been drug through the ringer and maybe doesn't entirely understand the changes, and what is going on with his sister or his parents..." 
I realize days and things can be hard,but there are those moments and days that are sweet, and well worth fighting for. When its difficult and  feel like I am losing to inadequacies and insecurities, The Lord wants me to remember, "I AM enough. Together my family is enough. Parker is enough". The Savior makes it so I can be enough. I have been called as a wife and mother, and I am enough to endure and happily bare up and fill that sacred mantle. 
The best thing we can do for Parker at this point is work to build neuro plasticity and create new brain paths for the body's motor function. This is done through lots of various physical and occupational therapies.We are looking forward to Thanksgiving and Christmas breaks. Parker will be attending a 3 week, Monday through Friday, 3 hours a day physical therapy "boot camp" in Michigan. We are optimistic about little miss Parker's future. She is a fighter, and she works so hard to meet her therapy goals. We love her and are so grateful and blessed to have her part of our family!  

In the waiting area at the Neurologist office

Morning of the big MRI

Saying see ya after the MRI

Waiting for sleeping beauty to wake up after the MRI

Watching dad and brother run around at the park. 

Halloween Girls

Eagles cheerleader for Halloween

"Meemo was here."

Rough housing with Dad

Cuddle time is always oh so sweet!

Dozer loves watching over his girl.

 

Thanksgiving card 2015

Thanksgiving Card 2015

Dear Family and Friends,

Gobble, Gobble, Gobble! Happy Thanksgiving 2015 from the Clay and Dallen Shumway family!  The pictures were taken and therefore a card must be made.  I can’t wait to have turkey and lemonade. 

Parker is the cutest 1 year old princess we know!  October 2^nd 2015 we were told she has Agenesis of the Corpus Callosum (ACC).  Ultimately ACC means part of Parker’s brain didn’t develop during Dallen’s pregnancy with her. The best thing we can do for Parker is various therapies to create neuro plasticity and make new brain paths for the body’s different motor functions. Parker is not only a rock star to her older brother, but is now a major hit at Physical therapy, Occupational therapy, and all the doctors’ and nurses’ we see. Since we have learned of ACC, Parker has been to over 30 appointments and has made great improvements towards grasping toys, sitting up, and rolling over. We feel so blessed and so grateful for the prayers and fasting in her behalf. She is a fighter and she never gives up. Our family is blessed to be in Philadelphia to have #1 Children’s Hospital Of Philadelphia (CHOP) to help face the challenges that lie ahead. We are truly grateful for our little girl and are optimistic about her future (Parker updates can be found on the family blog.  www.thevrouw.blogspot.com).

If you were to ask Vander what he is, he’d say, “so fast!”   He loves running fast, cars, watching Hot Wheels on YouTube with Dad, building projects at Home Depot, and making Hot Wheels tracks or playing with his train set. He got his first kiss on Halloween night when he dressed like The Flash. He has another young girl dreaming about marrying him and he loves to flirt with college girls.  We can’t wait for him to think girls have couties. Vander loves nursery, singing songs, and facetiming grandparents.

Dad is excited to be done with classes after the 2^nd week in December!  1.5 more years of clinical rotations and 3 more years of residency and he will be a bonified foot and ankle surgeon.  Each step has been an adventure and he is excited for each new opportunity that his profession brings.

Vrouw aka Mom, and the kids go to 3-5 appointments for Parker a week, work on letters and numbers with Vander, read books, play with the dogs, and get excited for Dad to come home from school each day. Vrouw has re-found primary music and the joy it is to teach music each week.  Though her power, limitless as it may seem, when making a Thanksgiving card Mom needed a team.  So Dad was put to work and now it’s through so be really grateful and eat lots of food! Happy Thanksgiving!

The Clay Shumway Family

Happy Birthday Parker

8/28/2015 
There is just something about siblings. 

06/15/2014 Happy Father's Day to all of our great dads, brothers, grandpas, uncles, and cousins out there! I am so grateful for the wonderful men in my life who have lead and loved by example. 

The boys just before church today.

On this Father's Day where we are expecting our second, I'm especially grateful for my sweetheart. Clay does so much for me, and makes up for where I fall short. He is endlessly patient, and manages to laugh when I think I deserve a yellin' at. I appreciate how much thought and effort Clay puts into making my every day life better. To be happy is what he wants for me, and happy he makes me. He works endlessly to preside, provide, and protect for our little family. Clay is a great dad, and Vander's love for him is just a reflection of that Dad greatness. I am so blessed to be his sweetheart, and be the one he calls Vrouw. 

"Happy Father's Day" to all of you wonderful men who have made our lives better because you are part of it. 

-the Vrouw 



I know blogging isn't much of a guy thing, but this video is MADE WITH LOVE for some of the guys that have so greatly blessed our lives.