Wednesday, October 30, 2013

Typical Tuesday

It's been several months since I posted. A lot has happened in our family over these last few months of absence. On August 16th my husband was diagnosed with a brain tumor. On August 20th it was removed. And on August 22nd he was diagnosed with brain cancer. As you can imagine, this news has changed our lives dramatically. 
Thankfully, after six weeks of radiation and chemotherapy, he is doing well. We have high hopes and faith that he will be with us for many, many more years.

Over this time period I have heard from many of you. Thank you!! We appreciate your prayers and love. And I personally appreciate your encouragement to continue this journey of advocating for kids who live with life challenges. 

Today's post is from a guest blogger. Jennifer Elliott Meares is the mother of a daughter with cerebral palsy. Ironically, Jennifer also has CP. The disease manifests itself differently in mother and daughter but certainly gives Jennifer special insight into what her daughter is experiencing. 

I know you will enjoy Jennifer's story today about a typical Tuesday.

Love to you all,

Typical Tuesday
by Jennifer Elliott Meares
On a typical Tuesday afternoon at the therapy office, I am sitting in the waiting room with the other Moms and a few Dads while our children receive various therapies such as PT, OT and Speech. We have our nose in a book or a smart phone and some of us are chatting with each other about current events. In walks a new mom with an all too familiar look of worry and distress as she begins to navigate the road ahead for her child. I wish there was something enlightening I could say to ease her mind and help her get to the place the rest of us has achieved. We have learned to accept progress but not expect miracles. We have not by any means given up on a brighter day for our children but have buckled down for the long haul. We continue to jump through most all the hoops set forth by the well-meaning doctors and therapist but we have come to understand that a tired and stressed out parent doesn’t do anybody any good. We ultimately have to decide what’s in our child’s best interest. We decide what is worth the effort and what is not. I could say all these things but I know that some understandings only come with time and experience and everyone’s journey is unique.

I smile politely at the new mom as my daughter and I leave and quietly say a prayer. My daughter and I drive through Chick fil A on our way home as is our routine. For there is homework yet to be done and bedtime routines before the day is done. My child gets her meal and ask, “Why does Chick fil A always gives a book when McDonalds gives a toy?” I say to her “because the people at Chick fil A want you to be smart.” To which she replies” So, the people at McDonalds don’t care if I am smart?” This makes me laugh as we drive on home. It’s a typical Tuesday. And that’s not all bad.

Monday, August 12, 2013

Push, Practice and Progress

The other afternoon I watched my daughter teach her cousin to glide underwater. Macy is seven and Sara Ashley is almost twelve. They are like sisters. This means the world to me and my sister because they don't have sisters of their own. This closeness as cousins will be their "sister" relationship.

"Teach me how to swim fast under the water like you, Sara Ashley."

Starting at one end of the pool, Sara Ashley disappeared under the water, and propelled herself with her feet, pushing off the wall. She raced forward and popped up with a wide grin on her face.

"See Macy, it's all in the push. Practice that part and you can go fast across the pool," she instructed. 

As I witnessed this lesson, I was reminded of an event that happened earlier that same day. Sara Ashley had a horse back riding lesson. Although she has been with her new instructor for two months and has made steady progress, she is not progressing as fast as some of the other students. 

Sara Ashley's lack of  progress compared to her peers can partially be blamed on the inconsistency of her lessons. Due to vacations, we have not kept a regular lesson schedule. For kids with LDs, consistency is key to successful learning. But as I contemplate the situation and others in our past, I am also realizing that I don't push my daughter as hard as I push my son.

Why? Is it because I am aware of her anxiety? Quite honestly, I think my son has performance anxiety too. Doesn't stop me from expecting a lot from him.

Maybe it's because I don't know what to reasonably expect her to be able to accomplish? After all, this is unchartered territory for me. But hasn't God already shown me that Sara Ashley is capable of more than I can imagine?

For whatever reason, my "push" on her seems to be. . . well, not so pushy. And I'm thinking maybe I'm being too easy on her. Just like her swimming advice to her cousin, maybe with more push and more practice, she could make more progress.

I think the real trick in this scenario is understanding the progress. As a parent of a special needs child, I am coming to understand that there needs to be push, but there also needs to be acceptance of the rate of the progress that might be experienced. My child will need more practice. I've often told Sara Ashley's teachers, "She may not learn as quickly as other students, but it is highly likely that she CAN do it- in time." 

She may not read as fluently, sit as quietly, act as quickly, understand a new concept as readily, or listen as attentively, but she is capable of doing all of these things in her own time and in her own unique way.

Isn't this the way God has blessed each of us? We are unique, each bringing our own gifts to this world.

We have different gifts,according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your[a] faith; if it is serving, then serve; if it is teaching, then teach; if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead,[b] do it diligently; if it is to show mercy, do it cheerfully.

Romans 12:6-8 NIV

It is my new resolution to strongly encourage (push) my daughter to persevere. I will give her the opportunity to practice her skills consistently. I will watch as she steadily makes progress in her own time, giving her the chance to grow in her gifts.  And I will love her for being His unique creation, just the way she is.

How do you encourage (push) your special needs child to persevere? 

Monday, August 5, 2013

God's Tapestry

Sheldon Tapestry

Several year ago I worked with a couple helping them decorate their Williamsburg style home. As an interior designer, I often have the opportunity to learn about many beautiful and historical decorative items and this job was no different. In my search to fill a wall in their sitting room, I found a very large oil painting on canvas. The painting was a pastoral scene and hung unframed. I learned that this piece was called a "tapestry cartoon."

Tapestry cartoons were created as models for a woven tapestry. They were huge full scale paintings and by the mid-17th century were done mostly in oil on canvas. The design of these cartoons was used to produce actual woven tapestries. A transfer process that was quite harmful to the cartoon itself allowed artisans to reproduce the cartoon image onto the tapestry. For that reason, tapestry cartoons are a rare commodity.

Although extremely beautiful, these cartoons are not dimensional. They are flat representations of what will soon be a multidimensional product. Only through the process of destroying the cartoon and weaving multiple threads together in a variety of colors and fibers, can a truly magnificent tapestry be created. 

We can look at our lives as the journey of a tapestry cartoon. 

When I married and thought about having children, I had a very distinct and rigid picture in my mind of what my life and my children would be like. Over-achievers, ballet dancers, football quarter backs, all A students, with impeccable manners, clear skin, straight white teeth and the ability to fly- just kidding, but you get my point! This version of my life is what I now refer to as a "tapestry cartoon." A flat and unrealistic view of what I thought our lives were supposed to be. 

Because when my children came along and brought with them no desire for hair bows, no interest in ballet, found more joy in playing in mud puddles than having tea parties, would rather design computer avatars than play football, and could never remember to say "Yes ma'am," I realized that the joke was on me. Like a cartoon, this life tapestry that I had created in my mind now evoked a humorous and sometimes confused and angry response on my part as I looked at what I thought life would be like versus God's plans for me and my family.

Thankfully, over time, I have realized that God has a beautiful sense of humor and that He knows much better than I do what is really important in life. Through the hands of this Master Weaver, my tapestry cartoon was destroyed. But in His infinite wisdom, I now have a tapestry that is much more intricate, beautiful, interesting, and meaningful than a cartoon imitation. Through His hands of grace, I have children who are developing character, perseverance, and a love of Jesus Christ. They are creative and intelligent. They are multidimensional in every way, from my daughter's ADHD and dyslexia, to her desire to own and operate a farm, and to be an artist and a teacher. From my son's shyness and lack of organizational skills, to his quest to research history, find treasures, experience new and exciting things, and follow his dream of becoming a pilot (maybe he'll fly after all!). The threads God has planned for my children are being continually woven into a tapestry of His divine making.

In my humanness, I could never have orchestrated or imagined this tapestry. If you had described it to me earlier in my life, I might have said I wanted no part of this weaving lesson. But I am slowly learning that only our Creator can take our lives, with our stands of fine silk and rough cord, and weave them into beauty. And although we may not realize the beauty initially, as we stand back and take a look at the bigger picture, changing our focus from the slubs of one thread to the glorious image of thousands of threads woven into a masterpiece designed by Him, we can see the glory of His creation.  

The even lovelier thing is that His weaving skills do not stop with one person and then start with the next. Instead, we are all woven together into a magnificent and colorful tapestry; each connected to the other, allowing us the opportunity to encourage and support one another through this journey we call life. 

We never know how our lives will turn out. Our plans have a way of becoming flat and meaningless when we compare them to the depth and texture of God's plans. We can't begin to understand how what we perceive as tragedy can turn into something meaningful, a true blessing. But God understands. This is the beauty of the Master Weaver and His divine tapestry.

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Romans 8:28 NLT

Thursday, July 25, 2013

Finding Christ in the Struggle

As she contemplated the surgery that her daughter was about to endure, Beth wondered how this could possibly be the right answer. How was breaking her child's legs, in essence crippling her, the way to help her walk?

She had prayed about it for months. It was not the first and would not be the last challenge that her child and family would face, but this one was hitting her harder than any of the previous trials.

Born at 26 weeks gestation, her daughter had endured a grade III intraventricular brain bleed which resulted in cerebral palsy. As part of her cp, Suzy's legs were permanently twisted. The surgery she was to undergo was designed to straighten them.Until now, her mobility was limited to moving with the aid of a walker. Through the results of this surgery, doctors felt she would be capable of walking on her own. This was a big step towards independence, which was her parents desire and prayer for Suzy.
But why God, Beth implored, did the method of treatment have to be so cruel and extreme? Beth was afraid. And so was her child.

Have you ever been faced with a situation like this? Knowing that you are trying to do what's best for your child, but also knowing that there will be extreme discomfort and possibly even pain involved? Has this left you wondering where Christ is in your struggle?

Leaning on and trusting God had become a way of life for Beth from the time she was a child. Thankfully, her daughter's journey had made her even stronger in her faith. So she leaned on God for comfort with scripture. 

Philippians 4:6-7:
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

The surgery was considered a success by the doctors, but it was only the beginning of the trial. After Suzy recovered for six weeks in casts, more challenges arose. The ease of learning to walk was not what they had expected. Physical therapy was intensely painful for Suzy. Knowing her daughter's high tolerance for pain, this brought Beth to her knees. After several visits at a rehab facility, Beth decided to call on their in-home physical therapist.
Hiding in her bathroom, out of the sight of her daughter and the therapist, Beth cried to God as she listened to her daughter scream in pain. Thankfully, after this visit, Suzy's therapy became more bearable. Following seven months of fear and anxiety, Beth was finally able to see a light at the end of the tunnel as Suzy made tremendous strides in her ability to walk. 

How can we find Christ in our struggles so He can sustain us and give us strength? Is it even possible to find God in the midst of such pain?

Throughout the trials of her daughter's surgery, Beth looked to God for her strength and comfort. Although she experienced fear in the process, she also found hope. As Suzy turned a corner and she was able to see the success of this horrible ordeal, she found this verse that gave her clarity.

John 9:3b, NIV:
Neither this man (child) nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him (her).”

Over time, Beth began to see Christ in the circumstances surrounding their family and this medical ordeal. Friends brought meals, gifts for her daughter, and spent time visiting. A wheelchair ramp was built by the men of their church. Thoughtful cards were received. Their family was ministered to in ways that she had never expected. These were the hands and feet of Christ.

Three years later, Beth celebrates as her daughter walks independently down the aisle of the church for choir performances. Watching, the congregation also cheers on this child who has endured so much. God has truly been glorified as they witness this miraculous transformation.

Though the challenges of their child's journey continue, this family is thankful that they also continue to find Jesus Christ. They see it in the healing that He has done in their daughter and through the comfort and clarity of His Word. And they find it in the love that He gives them through friends and loved ones who support them.

As parents of special needs children, we are often left wondering how we will make it through our circumstances. Admittedly, it is not easy. We find ourselves in the valley again and again. It is important to remember that the ways Christ presents himself may be unexpected- relationships, meals, wheelchair ramps, gifts. But even in our pain, we must look and expect to see Him. We must recall His promises to us. Through our struggles, my prayer is that we can always find His redeeming grace, remembering the blessing that He is with us always and forever, until the ends of the earth.

"Teach these new disciples to obey all the commands I have given you. And be sure of this: I am with you always, even to the end of the age.”
Matthew 28:20 

Monday, July 22, 2013

I Understand the Leash

My husband and I were seated on the patio area of a restaurant recently when I overheard the comments. 

"Look at that! I can't believe someone would do that to their own child!!"

I looked around to see the topic of her indignation. A mother with a toddler. The source of disbelief was the leash that was strapped to the child and held by his mother. It had a harness at one end that attached to the child's torso in a comfortable fashion. On the other end his mother hung on tightly. 

I looked around. All about me I saw the traffic of a busy intersection. There were hundreds of people moving to and fro. Other restaurants lined the street with open air seating. Shops also lined the street, complete with clothing racks and other places perfect for hiding.Time turned backward in my mind to December of 2003.

Going to the mall to see Santa is an annual tradition for our family. We've been doing it since my son's first Christmas and we haven't missed a single year. The kids are always excited about our yearly trek.We start the evening by eating at our favorite Italian restaurant located next door to the mall and then we move into the mall in search of the line to see Santa. But December 2003 almost put a stop to this long-held tradition.

That year, after we had filled our bellies with ravioli, maniccotti, and lasagna, we ventured into the mall and found Santa's line to be a mile-long. The kids were only five and three, so instead of standing in the long line we decided to do some shopping first and then come back to see if it had shortened. 

My husband, who doesn't get an opportunity to Christmas shop very much, asked if he could wander off alone and try to buy some surprises. Anticipating that these surprises might just be for me, I happily obliged. 

This was my first mistake of the evening. I didn't realize how difficult holding on to two children alone in a mall was going to be (especially since one was a hyperactive and impulsive three year old with undiagnosed ADHD). Perhaps I should have realized this would be a problem based on my experience of taking her to the grocery store. But the mood was merry and I had no worries except what my dear husband might be purchasing to put under the tree.

No sooner was Rob out of sight than Sara Ashley darted across the mall and into a clothing store, hiding in one of the round clothing racks. As I frantically screamed her name, looking for her, Robert walked in the opposite direction headed to the nearest candy machine. After retrieving him, I was finally able to find Sara Ashley, only to have her run away from me again. This happened at least four more times within the next 45 minutes, and all the while she giggled at this game she had created. My description of this game: Scare Mommy to death and make her very angry in the process.

After 45 minutes of this, with Rob still no where in sight (where was he???), I finally found my daughter (again!) and grabbed her arm, holding on for dear life. The line for Santa had shortened slightly and I thought if we could just get in it, maybe she would place her focus on sitting in Santa's lap and not on hiding from me. But not one minute later I felt my arm jerk as she tried to dart away again. This time, I instinctively jerked her back to me- hard. As I turned to angrily explain to her that she could NOT run away again, I noticed that she was holding her arm (the one I had jerked) in a very unnatural position. 

Oh my Lord, have I broken my child's arm??? I crumbled. I did everything I could not to cry in front of my kids. Where in the world was my husband?? HELP!!!

A few minutes later, Rob finally showed up, shopping bags in hand. Turns out this man who has a keen sense of direction when outdoors, gets totally lost when inside a mall. He had shopped for 30 minutes and then it had taken him 30 more minutes to find us. (Even today, he still gets lost in this mall?!) So here I stood, with Robert on one side of me and Sara Ashley on the other, close to tears. 

"Look at her arm Rob! She can't lift it. I think I've broken her arm!"

Rob looked and agreed that something was definitely wrong. We stepped out of line and headed to the closest ER, only minutes away. Unfortunately, Sara Ashley had also busted her lip at school that day while playing on the playground. As we checked into the ER, we were greeted by two employees who took each of us to different areas of the hospital and questioned us about what had happened to her. I was SURE we were going to be charged with abuse and taken to the nearest jail cell. 

After the nurse who was examining Sara Ashley had convinced me that I had, indeed, broken my child's arm and I was in hysterics, the doctor came in. His examination was quick, and with a pop of his wrist, her arm was back to normal- fully functional. 

"She had nursemaid's elbow," he told me. "It can happen pretty easily. Be careful. Once it happens one time, it can easily happen again." And off he went.

Needless to say, I have never been so relieved in my life. We left the hospital and headed home without seeing Santa and with my husband vowing never to go back to the mall again. A week later my sister went back with me and we finally got that year's coveted picture with Santa (see above). Thankfully, by the next December, my husband agreed to go back and the tradition continues. We can now look back on this experience with laughter and have shared it often with Sara Ashley and Robert who don't remember it at all (thank goodness!).

As I sat and watched this mother holding the leash, I thought to myself, I completely and totally understand this leash that she has attached to her child. Like our heavenly Father who desires to protect us when we go to Him, a parent desires to protect their child. How can we fault someone for that? 

When a child is impulsive and hyperactive despite discipline, lacking normal reasoning skills and an understanding of danger, when a parent is working their hardest to teach their child obedience and respect but has to work within these differences, a leash is not a cruel tool. It is the protection of a loving parent. 

Whoever goes to the Lord for safety,whoever remains under the protection of the Almighty,
can say to him,
    “You are my defender and protector.
    You are my God; in you I trust.”

Psalm 91:1-2
Parenting is hard, especially in a fish bowl. Do you have a leash experience? Or maybe just a time when, because of your child's differences, you chose a different path than others that caused judgement?

Thursday, July 18, 2013


This morning as I awakened, my mind drifted into a peace that it hasn't felt in eleven days. My children are home! Last night they arrived with the stories of a wonderful vacation shared with their grandparents. Souvenirs were displayed, stories were told, and hugs exchanged. Great. Big. Bear. Hugs!

There is nothing quite as comforting as waking up knowing exactly where your children are- because their heads are lying only feet away from you. Whew...I can breath a little deeper today. Thank you God.

So this morning I am coasting. Happy to have my children in one place, under my own roof. Happy to have a few weeks left of summer to be lazy and carefree. Coasting...

Looking back, I realize that this has been an entire year of coasting for Sara Ashley and her learning differences. Unlike the years leading up to this one, we have had an almost pain-free normal year of school, friendships, extracurricular activities, and academics. Actually, we have had a stellar year. With her award winning essay, Character Award, interest in horseback riding, and several new friendships formed, it has been a groundbreaking year. This coasting thing is becoming very comfortable. And that makes me nervous.

When things are going so right, do you begin to wonder when they will inevitably start going wrong?

This is called fear and it has the power to altar my perspective tremendously. 

Fear is nothing new to me. It's something that I'm not proud of and I work hard every day not to let it control me. But it still rears its ugly head on more occasions than I would like to admit. Faith, courage and love are the antithesis of fear. Upon discovering that this year of coasting is creating fear in my mind, I have begun to pray for faith and courage. Prayer can provide answers. The fruit of my prayer and what God has asked me to remember is found in these verses. 

A Time for Everything
Ecclesiastes 3:1-8, 11

1 There is an appointed time for everything. And there is a time for 
every event under heaven-

2 A time to give birth and a time to die; A time to plant and a time 
to uproot what is planted. 

3 A time to kill and a time to heal; A time to tear down and a time to build up. 

4 A time to weep and a time to laugh; A time to mourn and a time to dance.

5 A time to throw stones and a time to gather stones. A time to embrace and a time to shun embracing. 

6 A time to search and a time to give up as lost; A time to keep and time to throw away. 

7 A time to tear apart and a time to sew together. A time to be silent and a time to speak.

8 A time to love and a time to hate; A time for war and a time for peace. 

11 He has made everything appropriate in its time.  

This is our time for coasting. 

So today I try to remember to celebrate. This is a wonderful season for my daughter. She is thriving. She is growing and learning. She is happy and beautiful. She is my heart. This is her time. 

Does that mean that tomorrow won't be her time too? I have to erase that fear. Troubles will come, like the changing winds of the seasons. But, like the wind, the Holy Spirit stays with us throughout our seasons. 

Loving us.
Guiding us. 
Empowering us in our journey. 

I am determined! I will not be afraid! I will allow myself to be free to enjoy the seemingly effortless coasting of this glorious season. 

And I will thank God for the fruit.

How about you? Are you coasting these days too? Or perhaps this is a season of storms for you? Let us pray for you. Please leave your comments or Message me so that we can pray for you or celebrate with you during this part of your journey.

Monday, July 15, 2013

Love and Logic

The brain is a mysterious thing. God gave humans a unique brain. Unlike the brains of other living creatures, our brains allow us to use reason and logic, and give us free will. We have dominion over all of the other animals because God granted us a superior brain. (Genesis 1:26)

Logic and reason are powerful tools that we use in our everyday lives. But how we use them is of utmost importance, as I found out about six years ago...

One late summer day when my daughter was six years old my husband called me with some news. The excitement in his voice was undeniable. He shared with me that he had just signed her up for little league football cheerleading. "It will be so fun for her! And she'll look so cute in that cheerleader uniform!" he exclaimed. The eagerness in his voice practically jumped through the phone. "She CAN do this!" he practically yelled.

I was driving at the time and it was all I could do not to pull the car to the side of the road and have a panic attack.

"Cheerleading?!? How in the world do you think she is going to be able to learn all those cheers? Not to mention adding the movements and cute dances to the equation!?!"

My mind inwardly screamed in outrage at the lack of logic and reason that he had exhibited when signing her up for this mistake. I was practically in tears just thinking about how it was all going to play out. Just a year earlier, Sara Ashley had been diagnosed with an expressive language disability. Word-finding and memorization were her biggest weaknesses. Surely this was setting her up for complete failure!

But my husband would not be swayed. "We need to let her give it a try," he insisted. Despite my strong reservations, I conceded.

Cheerleading started in early August. The practices were hot and long. The coach was a former professional cheerleader with little tolerance for the antics of six year old girls. But as the practices progressed and I watched my daughter, I was amazed. Although she did have some trouble remembering the words to the cheers, she learned the routines with ease. She blended seamlessly with the squad and had a great season of cheerleading! My husband was every bit the proud daddy! And, despite my initial reservations, I was a very proud mama too.

The abilities of my daughter in this circumstance defy all logic and reason. The previous school year, she had been unable to learn her complete alphabet and hadn't been able to count past eleven. How was it possible that she was successfully performing cheers and dance routines?

Logic and reason are certainly gifts from God. But, as humans, we are still not capable of fully understanding what God can and will do in our lives if we give Him the chance. If we allow logic and reason to dictate our willingness to follow the promptings of the Holy Spirit, we are not using these gifts the way God intended. And, as my husband taught me, if we use them to limit our potential or the potential of those around us, we are misusing them altogether.

When Joshua walked around Jericho seven times blowing his trumpets in order to overtake the city, was he using logic and reason? When the young and small David declared that he would fight the giant Goliath and even shed the armor provided to him by Saul, what kind of logic was that? When Peter stepped out of the boat to walk on the water towards Jesus, there was no reason or logic involved. These men were not making their decisions based on wordly logic. They were acting in faith and obedience to God and their heart's desire to follow Him.

Recently a friend told me about her five year old son's learning disability. Somehow his brain has associated letters with numbers. If asked what the letter "F" is, he taps his leg six times (as F is the sixth letter in the alphabet) and comes up with the answer "6." The logic of his brain is amazing and interesting to me. He is sure to be magnificently creative! But I am certain that it is very frustrating to his mother at this point. Trying to teach him to read has become a task akin to beating her head against a brick wall. Her aspirations for his future are limited to the abilities that she can currently see. She is not alone. I have heard this from the parents of many LD kids.

Looking back now at my own daughter at the age of five I can totally relate. My hopes for her were also limited and I was very fearful of what her future would hold. When we are faced with a brain that defies the logic and reason that we can understand, it scares us. We long for our children to succeed and to thrive in this world that operates by a strict standard of norms. But as I look at my daughter now, and all that she has overcome, I can speak with authority when I say that we must reach beyond our own comfort of human logic and reason to allow our children the opportunities to reach their full potential. The only way we can do this is to listen to God's promptings and, with His guidance, step out in faith. 

God's will for our lives is to look to Him for direction. His love for us is enough to give us peace in our circumstances, whether they make worldly sense or not. Our decisions should not be based solely on logic and reason, but on our heart's desire to follow Him.

God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.
Ephesians 3:20 The Message