jade in the parke

Thursday, May 28, 2015

How Lionel Ritchie Ministered to a Special Needs Mom

I answered a call by Divine in the Daily to write about my perspective as a special mama. I have created a special Page on my blog that says, "Arthrogryposis and Abby" to highlight some special stories. Please click over to find out more.
arthrogryposis

Most days and years, I don't feel special. 
I am just like you, a normal mom trying to live life and love my family albeit imperfectly. 
Some days, I am a "Becky Home-Ecki' with a meal plan and groceries and invitations sent out to celebrate a child's birthday weeks in advance.  And, on other days, I am scrambling at 4:30 wondering why everyone wants to eat every four hours.
Yet, there are days when I am muddling around asking the Lord to fill me with His love.  
Actually, those are the best moments. 
If special means blessed and stretched, then, yes, I am a special mama.  In this context, I am a mother of an extraordinarily special daughter who happens to have special needs specifically Arthrogryposis Multiplex Congenita (Multiple joint contractures present at birth).

Here is the beginning of my piece at Divine In the Daily:

"Could Every Special Needs Mom Use a Little Lionel Ritchie?"

After twenty four hours of labor, and over six hours of pushing (yes, six!) I finally gave birth to my second child. Whereas our first born remained unnamed for two days in the hospital, this baby girl was named within minutes of birth. My husband proudly announced, “Abigail, which means my father’s joy.” They placed her on my stomach and I noticed the nervous glances of the nurses as they gently touched her outward-turned hands, bent wrists, and ramrod straight fingers. I had whispers of thoughts, but never voiced them: Was something wrong? Before words tumbled out, they whisked her off to the NICU.
Click Here to read more.
Please come back and read my new page, too!



As a special note: Abby read the very early draft of this post and even gave me some hints to improve it, "This is not very good. You are just rambling".  She was right. 
Sometimes, it feels awkward if you know someone's story, but you are not sure how to talk about it or even that they know that you know. Please feel free to email me or post a comment here. If I know you in real life, I give you full permission to broach the topic with me! 




arthrogryposis, amc, marching band


Tuesday, April 28, 2015

A Mom's View of the Baltimore Riots

Some might call me over protective. And to that I say, "Thank you."  Listen, my kids eat orange peanut butter crackers, watch the electronic babysitter or know the latest YouTuber. We are not in a bunker, but we usually shield our children from mindless exposure to news radio & television. Yes, I am the mom who changes the radio station when a distasteful story comes on after the traffic and weather updates. We grab our news from a trusted magazine, newspapers and, like most of this generation, social media. Twitter gives us the most up to date and in real time news stories as they are developing. 
baltimore, baltimoreriot2015, baltimore riots 2015, baltimore riots, riots, riot, charm city, Governor Hogan, National Guard, State of emergency, curfew, inner harbor, johns hopkins, physics, prayforbaltimore, pray for baltimore, freddie gray
Please share

We hope our younger kids do not become anesthetized to pain and suffering, so we are careful when we expose them to these stories we see while scrolling through our feed.  We want to couch the narrative put before them in a framework that they can handle. So, we usually just summarize the news story with the pertinent facts they might hear from peers the next day.  The brutality of the world can be navigated with our guidance with compassionate, age appropriate information.

Yesterday was one of the days we just didn't talk and pray about the news.
Yesterday, we dusted off the remote controls and switched from Fox, CNN to Baltimore channels watching the destruction of a city we love so much.
Yesterday, we watched in shock at the city of Baltimore which looked like a war zone compared to just four days prior at my son's soirée with his Senior class celebrating in downtown Baltimore. 
Yesterday, we were reminiscing about this past Saturday where we enjoyed a free, family program called "Physics Day" at Johns Hopkins University as we heard reports coming in that JHU students were texted to shelter in place as rioters were roaming on campus.
baltimore, baltimoreriot2015, baltimore riots 2015, baltimore riots, riots, riot, under armor, charm city, Governor Hogan, National Guard, State of emergency, curfew, inner harbor, johns hopkins, physics, prayforbaltimore, pray for baltimore, freddie gray
Our history in commerce: Domino Sugars & Under Armor

The absolute shock we felt as we watched video feeds of men confronting a cameraman and pushing him down and kicking him, the rocks being lobbed at the police trying to get a hurt officer to safety and the armfuls of clothing in people's arms as they threw their loot into the trunks of their car and drove away from Mondawmin mall with glee. Seeing teens with backpacks run into a 7-11, grabbing something, anything and pushing their way out through the crowd of kids wanting something for nothing. My teens couldn't believe it. Early on, we encouraged our seven year old to play with a tablet to keep her eyes off what we couldn't stop watching. Images of people jumping on police cars and seeing fire after fire light up the screen. My teens were righteously indignant as we heard live reports of water hoses being cut as firefighters were attempting to extinguish these man-made fires. My son wrote these words on Facebook as we watched the riots: 

I've seen videos of the violence of the '60s during some of the darker moments of the Civil Rights Movement. 
I've seen the videos of violent protests in Ferguson, MO. 
I never thought I'd see the violence in the city just 20 miles from where I live. 
I never thought I'd see senseless brutality and mindless theft and destruction in a city so dear to me. 
It makes me sad. 
Where did the respect for life, liberty, and property go? 
Where did justice, wisdom, moderation, and the moral sense imbued in America go? 
Where did a reverent respect for the Church and God go? 
Whatever was left of it went up in flames in the streets of Baltimore.



As a mom, I need to help my children not be hardened and to guard against bitterness. 
A news conference, State of Emergency, National Guard.  I scroll through my feed again, it is my son's peers that are getting texts to show up for duty; Boys to men called to keep order among men acting like delinquents. Young men the same age as my son. 

We are called to pray. We are called to seek justice. 
Something awful happened in that ride to the station for Freddie Gray. 
Investigations, punishment, discipline, peaceful protests--All of these can happen without chaos and destruction bringing shame to Charm City. 

I know my children could be considered privileged and by writing the words: Soirée, dinner at a lovely restaurant, and we attended an educational event as a family unit (Father, Mother and all four kids),  that we are on a different track than those who live even a few blocks from Hopkins. 
This sobering reality keeps me humble. 
Is the level of violence and lawlessness mitigated by these factors? Do you agree or not?

What about these rabble rousers? Maybe their families are fractured? Maybe they don't know their fathers? Maybe they were the recipients of police brutality? We don't know their stories, but destroying their infrastructure and their city is not righteous anger, it is stupidity. They are hurting themselves and their neighborhood, by looting and burning their own corner stores which are relied on heavily and even ruined the CVS that took a community effort to bring into that neighborhood. Getting something for nothing or if "I don't take it someone else will" as we heard from the mouth of a looter last night, brings shame to the city of Baltimore.

A bright shining star were the clergy who stood strong and marched through the city. Praying, singing and standing for the message of peace and repentance. Right after they marched by a large construction site, a fire was set which fanned into a fiery inferno. A local reporter remarked of the irony of the pastors praying and then the fire is set after they passed by this site. 
But I know to whom they pray. 
I trust in Him that He is the God of order and not of chaos. 
So, if there is nothing to do except to be cynical or condemning, then pray. 
Pray for justice for those who perpetrated the crimes against the city and pray for justice for Freddie Gray. 
Pray for the safety of the Baltimore City Police department and the Firefighters. 
Pray for the National Guard. 
Pray for those who are traveling from around the country to help. 
Pray for Baltimore. 

baltimore, baltimoreriot2015, baltimore riots 2015, baltimore riots, riots, riot, charm city, Governor Hogan, National Guard, State of emergency, curfew, inner harbor, johns hopkins, physics, prayforbaltimore, pray for baltimore, freddie gray

If you know of reputable groups to support, please leave a comment with information on how we can help tangibly!

Friday, March 6, 2015

Grab hold of the gospel-Updated

[The following is a post from JADEintheparke.com's Facebook group. We have been very active on social media and we would love for you to join us on Instagram or Facebook]

great is thy faithfulness, bible, shereadstruth, gospel

Good morning!
19 Remember my affliction and my wanderings,
    the wormwood and the gall!
20 My soul continually remembers it
    and is bowed down within me.
21 But this I call to mind,
    and therefore I have hope:
22 The steadfast love of the Lord never ceases;
    his mercies never come to an end;
23 they are new every morning;
    great is your faithfulness.
24 “The Lord is my portion,” says my soul,
    “therefore I will hope in him.”
25 The Lord is good to those who wait for him,
    to the soul who seeks him.
26 It is good that one should wait quietly
    for the salvation of the Lord.

Lying in bed this morning, I reach for my phone. I see these words.

Yet, waiting outside my bedroom door are the kids home from school, the dishes piled high in the sink, and my own heavy heart seems in opposition to these words of truth. 

His mercies are new this morning, well because they never come to an end. 
Our hope is not based on our circumstances, but in the Lord. 
He is our portion. 
He is what we need for today to fill us.

Save this photo on your phone or your lock screen, or, most importantly, read these words for yourself in the Bible.

See, friend, we are calling this to mind so our souls have hope. 
Every morning when we awake and exhaustion, anxiety or regret assails us. 
Everyday we need to "preach the gospel" to our forgetful hearts. 
Everyday. Even before we leave the bed and hit the ground running, we can confess our hearts. 

Remember His love has never ceased and that He is faithful even when we are faithless. This promise is for you and me, believer. 
Grab hold of it and hold on tight as the day and the stresses of our lives assail us. 

Preach the gospel daily or even hourly. But, if we forget, KNOW you can come back to this place of rest and repentance EVERY morning. So take heart! Great is His Faithfulness.

See you tomorrow, friend.

Saturday, September 6, 2014

Special needs siblings serving their family


Special needs siblings serving their family & how do you measure service hours for college applications when your service is normal in the abnormal world.
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html


This is the story of today:

My husband is out of town for a much needed R&R fishing trip with friends, 
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
 2012 Photo Cred: Doug Parke http://goodimagephotos.com
I needed to teach at the gym early this morning. No problem, right?

Well.... let's just say that at 7:05am, I stop brushing my teeth sensing I should check my 9 year old's blood glucose.  Climbing up the bunk bed ladder with her Vera Bradley's Happy Snails wallet which holds her testing kit in one hand, I wake her and find out she's 71. 

Potential crisis averted after ingesting a handful of Cotton Candy grapes (15 grapes to be exact as most grapes are one gram of carb per grape) as I do the "Wake up" drive by to my groggy 15 year old who has to be up at 9:10 am for her ride to Marching Band practice. 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
Feeling a bit overwhelmed, I wake up my exhausted 17 year old son who had three Varsity Soccer games this his first week of school with multiple assignments due including a college resume (still working on that one). 

He woke up and stumbled out into the hallway to help check on his little sister with his cell phone in hand ready to text me her updated test numbers after 15 minutes have passed.  With only 45 minutes until my class, I grab my gym bag and finish getting ready. A sideways glance in my oldest girl's room catches him lowering the bed rails on her cool remote bed aka a rented hospital bed that she's had since her big surgery
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
He has her manual chair ready for her transfer. As I am running back and forth from the car to the house as I forget my water bottle, I get a text with a crazy high number of 314.  What? It went up that high in 15 minutes? I wonder if juice from those super sweet grapes (that have notes of cardamom in case you were wondering if they tasted like cotton candy) are coating her finger tips and altering the reading. I call up to him, "Please ask her to wash her hands and try again" as I walk out the door for the final time. As I reach the end of our street, the phone rings and I hear a "155" and he passes onto me her request to go back to bed. After expressing my appreciation, I remind him to help Abby get her leg braces on and help her stand up from her tiny wheelchair, so she can do her morning routine.

I pull out onto the main road relieved knowing my son stepped into the gap. He may have memories of battles with his mom on the amount of time he gets on the computer from not that long ago ("Why do we watch other people playing video games on youtube? But I digress), but when push came to shove, he knows what's important. A part of me, the worry wart mom that projects 10 years down the road based on habits now, started to melt away. 

I marvel at him becoming an adult this week. Eighteen years ago on September 10 (Five years and one day before the day of infamy 9-11), my nine pound, ten ounce chunky baby was born. 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
J center surrounded by two cutie pie girls

Now, he is looking at colleges and beginning his busy senior year with a thesis, speeches, co-leading his philosophy club, running his own part time lawn mowing business and the uber stressful period of navigating the college application process with deadlines looming on November 1st and continuing until May when final decisions are made.
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html
Athens, Greece

We have been stuck in a rut with writing his resume, especially in this pesky area which he seems weak in: Service and volunteer hours. He has some, but not near the amount as his peers. We have been on the receiving end countlessly during surgeries and recoveries, having babies, multiple hospitalizations with our special needs kids and my husband's battle by the River Styxx (this is my cryptic way of saying he lost his Achilles' tendon to MRSA last year) by hot meals being brought to our home, grocery shopping errands ran, a lawn mowing by a co-worker, child care, carpool help and even our laundry being picked up and delivered back to our home (that was very humbling and I cringe a little to think I said yes to the prodding from our meals coordinator at church). 

Have we served others in the same way? Have our actions been loud enough to be "caught" by the next generation of Parke's. If someone looked at our volunteer hours, it has been centered on our kids and their activities and increasing in hours and commitment as our kids have grown and we have emerged from the diaper bag trenches. I think that is normal and it is blessed. 

Today there was an opportunity for him to serve a family from his school moving to a new home, usually we jump on that type of service, but we had to decline which filled us both with regret and a bit of guilt. Sometimes being a special needs family means that we have to say no to worthy endeavors to huddle close and to care for those we are called to serve. A mental plan to join in with our church's Habitat for Humanity's building project was stalled before it even began when my nine year old developed Juvenile Diabetes. We are THAT family. We can be embarrassingly needy at times. So, we love it when there is a need where we can serve someone else. 

Yet, when the opportunity arose for him to step up to serve our own little, needy brood, and go against the normal desire to sleep in as every teenager in America would love to be doing after the first week of school, he stood up by God's grace. He woke up without one ounce of grumbling and served quietly not in the college application with documentation kind, nor in the Presidential kind, but he did it with no expectation of thanks and recognition which is the best kind.

I come home and find Abby made it off successfully and cook up a hot breakfast. He is curled up half awake on the couch with his little sisters body slamming & giggling way too loud for the morning hours. While eating our eggs, I hear from the kids nonchalantly that Abby walked into her bedroom, fell hard as she tripped over a hair dryer left accidentally on her floor. Her long leg braces called KAFO's (Knee Ankle Foot Orthoses) have to be in a locked position at the knees to keep her straight so she can shuffle walk. Darn that hypotonia! Her littlest sister put the tripping hazard away and her big brother stepped in and lifted her up back onto her feet. 

The mom guilt thing is real, people. If I had known she needed to be there early to practice, I would have secured a sub for my class. I am so thankful that there was peace and calm in our home in the midst of the crisis and my boy is becoming a godly man who cares for his family. 

There are eternal blessings that can't be documented nor proven.

After he curled back up on the couch in a bagel coma, this momma made the biggest, baddest cafe mocha I could brew. 
http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html

Happiest 18th, son! We are blessed.

Moms with little ones, remember:
The Days are long, but 

http://www.jadeintheparke.com/2014/09/special-needs-siblings-serving-their.html

Friday, June 20, 2014

Release

These words have been prompted by lisajobaker.com and her writing prompt of "Release" I sat down to write a few words of letting go of my expectations for my husband's healing after a surgery this week to restore his mobility and another story tumbled out. 
A story of grace, suffering and healing.
Of Ellen Belliveau.
______________


Release. Letting go of my dreams. Letting go of my unbelief. Letting go of my expectations of a pain free life. Letting go that there are guarantees of full healing this side of heaven.

Releasing as the Lord calls us to have an open palm lifted up to heaven with our dreams and desires laid bare as He sifts our plans in His perfect will leaving there some of my longings fulfilled and lovingly placing what we would not ask for nor even want for our enemies. Yet, here the latter sits in my hand, unwanted and we wish we could close our grasp on the good and squeeze out the suffering from our lot in life. The world is groaning and my hands are heavy. "Come to Me all who are heavy laden, burdened and I will give you rest".

This story of release is about a dear woman who came alongside me 18 years ago in the Titus way as an older woman teaching the younger woman. She read (and approved) my parenting books that I clung to as a new mom-to-be, showed me how to care for my first born, dispensed advice to keep the fire burning in my marriage and showed me homeschooling wasn't for the weirdos. I still remember sitting in her backyard under the drape of the fragrant lilac flocked trellis as we sipped iced tea, her little ones milling about and she shared her method of getting her babies to sleep through the night. A conversation cut short as we saw her oldest son, Michael, climbing onto the eaves out from his second floor bedroom window which had her racing from her chair to stop what seemed natural to him. She kept her boys safe.

And when my mother died of breast cancer when I was 26, she swooped up my 15 month old to give me time to grieve and comforted me that I wouldn't suffer the same fate. We nursed our babies. We did everything right. It was what I needed to hear.

She taught me how to keep it simple when offering hospitality, how to iron tissue paper to reuse for gift bags and she taught me how to use a sewing machine and lived in a little wooden house with a beauty in and through her. Ellen was the original hipster interweaving flowers and natural materials found on the side of the road into a stunning arrangment. She nurtured her beautiful daughter to value matters of the heart. She did good.

Ellen wrote notes that would chastise and ask you to fight evil and were filled with poetic words that in her ethereal way drew you closer to the Lord. I have them still. She wrote gospel drenched words in a journal that she presented as our wedding present. This jumbo sized journal covered in a quilt pattern and shlepped to every anniversary dinner for the last 20 years writing down our memories-pleasant and painful. This record grounded us, helped us to marvel at God's goodness to us. The journal was her encouragment to our newlywed selves to keep communication open in our marriage. Write letters to each other, rant, dream as we travel along this road together and we did. Like a quilt weathers and softens through generations of use so my marriage fibers were stressed and pulled and rubbed and made stronger with softer, grace filled hearts.

I wish I could say we were as close these last several years as we were then. I wish we could go back and I could be who I am now and we could be sisters instead of mentor/mentee. But this is our story and it is life and His grace and it is good. 

We want to clamp our bony fingers down on the blessings He gives, yet He calls us to open our hands. This week she passed from the pain of this world and her spirit was released from her cancer riddled body.
Released to Her Father's care. 
Released to worship. 
He did good.
___________________________________


Sunday, June 15, 2014

4 Mini Tributes to our Special Needs Dad on Father's Day


Being a Dad is a fearsome thing, a "shaking in your boots" kind of fearsome: 
Leading a family of little humans, navigating life's storms, weathering weaknesses and failures. 
There are joys, laughter and deep wholehearted goodness to pad the path. 
Kudos to all of the fathers out there (and especially to all of the moms doing it alone) on this Father's Day.
http://www.jadeintheparke.com/2014/06/4-mini-tributes-to-our-special-needs.html
2014

But there is a part of my heart buried deep on the side of Dad to our JADE gang: 
  • A man who climbs the bunk bed ladder every night at his bedtime, reaching over the sleeping nine year old to find a plump, warm finger to prick and squeeze a drop of blood on a strip which will dictate the next few hours of his night-staying up to repeat the climb 20 minutes after rousing a sleepy girl to eat candy or a night off to get some much needed rest.
  • Or to stay up late helping his wheelchair rolling 15 year old daughter transfer from her rolling throne to bed regardless of when her adolescent, circadian rhythm is done with her evening routine. 
  • Or to prepare Bible studies for a bunch of cool teens who congregate three times a month leading them in the study of the Word. Words that are life giving & showing them Jesus. 
  • Or to chicken dance and be goofy, well, just because. 


Many men are fabulous fathers, but those who are present in the lives, albeit imperfectly this side of heaven,  with their special needs families are worthy of all kinds of crazy accolades. 

Thank you for reading mine.

http://www.jadeintheparke.com/2014/06/4-mini-tributes-to-our-special-needs.html
Junior Soiree: The J guys

Special Bonus: Go to our FB page to watch the video of our "Top Ten Reasons Why We Love You" and the Florentine wallet which we picked up on the Grand Tour for him. CLICK HERE. Don't forget to "Like" our page for really intermittent updates.

Tuesday, May 27, 2014

Greece and Italy: Here we come!

DAY ONE: Travel Day

Hello! Yiu Su! Ciao! 

You are invited to join J (of JADE) and myself for an once in a lifetime field trip visiting many of the ancient relics, sites, museums of Ancient Greece & Rome as well as the cities that served as bastion of Renaissance art as a culmination of his entire classical education beginning in third grade. 

Rockbridge Academy has been a blessing to my son as he transitioned from classical homeschooling with our challenging tutorial (Yay to Granite Classical) to a full time school in tenth grade. In the classical education model, there are three stages of learning: Grammar, Dialectic & Rhetoric. 

My son, an eleventh grader, is in the thick of the Rhetoric stage where they work on perfecting the skill of public speaking and writing with the emphasis on expressing their thoughts, ideas, and convictions in an informative and persuasive manner. His school takes all of the eleventh graders on a Grand Tour to fill out their classical learning. We will be on this adventure for 18 days! 

Care to join us? Subscribe to my blog for email updates daily (daily is based on my availability to utilize wifi). I am so excited you can be a part!

Some fun pictures:

We left Sunday, May 25th from Dulles and flew through the night to Frankfort, Germany. Lufthansa served a hot meal and the staff were professional and courteous. And the plane? Lovely. 

I can't sleep, and it is 1 am EST.


We arrived around 2:30 am EST. With only one hour to traipse through long corridors, up then down the escalators, caught a train to queue up for passport controls, security screenings, and to catch our flight to Athens.

Here is our luxury jet at the Frankfort airport:
The coolest feature of this Lufthansa aircraft was the live cam footage of us landing. I will update this post with the video when I am able! Stay tuned!