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

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

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

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.

 

11/24/2015 
Yesterday little missy was fitted for bilateral MAFOs (molded ankle-foot orthosis).  These leg braces will be worn once a day for one to two hours. Their 2 fold design is to maintain leg support when she practices standing,  then  allow her ankle and foot to stretch into a 90 degree angle. For now we see the braces as a preventative measure where we are able to manipulate her ankle and foot into a 90 degree angle and don't see any other correctional needs at this time. We are so grateful for the knowledgeable team of professionals  who provide us with the resources we need to best meet Parker's needs. 

-The Vrouw

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

4/06/2015 KIDS HAPPY FOR MALL EASTER BUNNY PICTURES...MOM SAYS YES PLEASE!

01/30/2014 It is 11 days before V turns one. I now understand the famous line parents always tell their 40 year old children, "It was like yesterday we brought you home from the hospital." Haha. It's hard to take in how fast this first year has come and gone. I'm not much for wearing feelings on my sleeve, especially when blogging, but I guess I will make an exception for this Shumway milestone. 
I am so grateful to have V a part of our lives. Life will forever be different. He has changed us. I think of the person I was before, and the person I am now, I can say I never would have made the changes on my own. No wonder motherhood is such a special, and endured experience. It is amazing to me how a child can take your heart, and take so much more from you in a single day. You know the days where you don't know the last time you showered. There you find yourself thinking you don't have anymore to give, then it happens. You get that sweet little smile, or that unexpected hug, slobbery kiss, or heart melting giggle. All of a sudden you find yourself overflowing with the receiving end of love, realizing your child is giving back to you so much more. I'm happy to know that all of the emotional ups and downs, diapers, spit up, crying, feedings, first steps, and first word is all shared with my sweetheart. I am so grateful that my sweetheart does beyond what he "has to." I know these are days to be cherished and gone before we know it. The love between father and son is special too. I see it in my boys. I am grateful for my boys making us a family. For truly because of them, I am Vrouw, and I am mom.  
-The grateful Vrouw

01/22/2014 Today is a landmark day for me. It's been hard and I can't believe today is here. Today marks the one year anniversary of Grandma Joy's passing. The longer she is gone, the more I miss her and realize how much she taught me.

-the Vrouw 

September 2013

Celebrate Grandma through one of Our Funnys.

I declared today as Grandma Atkin Day! Why? Because I have been thinking about her a lot over the past several days... and I ended up making two of her most favorite recipes...today!  I'm so grateful I got to have Grandma Joy as My Grandma. It is interesting, the longer she has been gone, the more I miss her. As I grow and learn more as a wife and mother I see more of the special person she was. I felt like I have always thanked her, but I cant wait until I can thank her even more.

-The Vrouw

I love this picture because I think we look alike and it shows the joy our relationship was.

Banana Cream Pie

Fresh tomato soup