Joy, Joy, Joy, Joy, Down in my Heart!

Dear Mommy, Daddy and of course...Bert!

I miss y'all sooooo much but that's not gonna stop me from having a lot of FUN! I have friends too!

I love y'all! 

Having a great time! SA

Summer Camp. I remember it with such fondness. Meeting new friends, camp fires, hokey songs, cafeteria food, and the outdoor adventures. Even the bad parts hold fond memories: scorpians in my shoes, a homesick friend, bug spray, and not wanting to leave when Mom and Dad came to pick me up. Seems like camp is just a typical rite of passage for most kids.

But for kids with invisible disabilities, camp can be a scary place. Both for the kid and for their parents. Counselors who are often young and don't understand the nuances of our children's differences, as well as cruel judgement by peers are valid concerns for families of these children. It is important to research the camps and their philosophies before sending our kids off on this summer adventure.

This year, I treaded slowly and carefully into the camp waters. After speaking to several friends who have sent their own girls to this particular camp, I began to feel a level of comfort about letting Sara Ashley go. Then, as I read the medication dispensement instructions, I felt even better. Blister packs were required (no possible mix ups) and medications were given by a nurse each morning and evening. Finally, after receiving a very detailed questionnaire asking me about my child's personality, likes, dislikes, and pretty much anything else that I could possibly impart to them about her, my comfort level went from a 5 to a 9. This camp truly seemed to care about my child and her ability to have a positive experience!

After these findings eased my mind, together Sara Ashley and I made the decision for her to go to camp. She was both excited and apprehensive. Making preparations for the week brought an intentional process. Although the camp suggested packing in several small duffel bags, I knew that this was a recipe for disaster for my child. I could visualize clothing from both bags scattered all over the floor of her room as she searched for that perfect shirt she wanted to wear. Instead, I packed her in one large and very organized suitcase. Once opened, everything could be seen at a glance. We reviewed everything in the case and how it was to be used, stored and discarded until we picked her up. We talked about the logistics of taking her medicines, the use for each toiletry item, and every other detail I could think of to prepare her for her week. Although she seemed exasperated with my demand that she slow down long enough to listen to this information, I know that in the long run it was helpful to her.

For the first time ever, I dropped her off into her dorm without having a long conversation with the staff about her ADHD and dyslexia. This transition is due,  in part, to her age, and to the preparatory efforts of the camp. As SA matures, I am beginning to rely on her to voice her own needs and reveal her own differences if she feels that she needs to do this. In the past, I don't think she was mature or verbal enough to advocate for herself. This is a scary but necessary step for us.

Despite the comfort level that I had attained prior to camp, I did worry. As each evening approached, I worried about her ability to fall asleep. This is often hard for her active mind and body. Each morning, I awoke to concerns about her ability to make friends who would accept her for who she is (wonderful, energetic and playful!!). And each day I prayed for her well-being, both physically and mentally.

By the end of the week, I was very ready to see my sweet girl! Arriving at camp, she quickly introduced me to her new friends. I was overjoyed to see that they sincerely liked Sara Ashley. I was also thrilled to hear from some of her counselors who told me of her positive attitude and sweet nature. 

Driving home, I asked Sara Ashley if she had shared her learning differences with her new friends. Not that she needed to, but my curiosity just got the best of me. This is what she said:

"They asked me why I was so wild. I told them that I have ADHD," she shared. "They told me they were so sorry for asking." This she said with a bit of amusement in her voice and a cute smile.
"I told them, 'No, it's OK! It's part of who I am, and it doesn't bother me at all!'"

Thank you Lord, for this child who accepts herself just the way she is. I know that she will face future challenges that may cause her to doubt her self-worth, but for this moment in time, I am thankful. May you continue to use her to teach me and humble me. Because of your works in her life, and in mine, I've got the JOY down in my heart. . .to stay!

WHY???

This last weekend left me with some time on my hands and I used it to read a book that's been on my list for weeks. Seems when you are writing a book it's not easy to find the time to read other books. :) But I'm glad I took the time to read this one!

The title of the book is Why? Trusting God When You Don't Understand, and it is written by Billy Graham's daughter, Anne Graham Lotz with a foreword by Joni Earickson Tada, the quadriplegic Christian artist, writer, and founder of Joni and Friends International Disability Center in Agoura Hills, California.

 

The topic of the book is obvious and it's a question that I've feared someone will ask me when I speak about children living with life challenges. I fear it because I am doubtful that I can answer it in a way that will be satisfying to someone who is in the depths of pain, anger and fear. The answers are plentiful and are backed by scripture, but they are not always what we want to hear and I've even heard them called "irritating platitudes". However, I did once find myself in a dark place, asking "Why?". And I did find the answers through friends who taught me about a God whose love and comfort provide peace in all circumstance. So although my fear sometimes rares its ugly head, I am trusting God to help me through it by studying material about this subject and by studying scripture. My hope is that one day I can introduce God's love to someone who is also trying to understand "WHY?".

I found that this book gave an abundance of great information about this age-old question and I want to share it with all of you. Here are some of the best take-aways:

1) God is bigger than our suffering. We can have hope as we place our trust in Him- in His faithfulness and in His ability to work out in our lives His purposes that will be for our ultimate good and His eternal glory.

2) Faith that triumphantly soars is possible only when the winds of life are contrary to personal comfort. That kind of faith is His ultimate purpose in allowing us to encounter storms of suffering. Trust Him!

3) Pain and suffering is so immediate and can seem so permanent that we can easily lose sight of the big picture. The pain can be so crushing and our hearts can be so broken that we just don't understand why! Why me? Whenever that question tends to fill my mind, I hear Him whisper to my heart, "Why not you? Just trust Me!"

4) If God were small enough for us to understand, He would not be big enough to save us.

5) While God doesn't always protect those He loves from suffering or answer our prayers the way we ask Him to, He does promise in His word that He will be present with us in the midst of our suffering and pain.

6) And finally...the quote that spoke very loudly to me as I travel through this journey:

Joy also in this-

that your sufferings, your losses and your persecutions

shall make you a platform from which

the more vigorously and with greater power

you shall witness to Christ Jesus.

- C.H. Spurgeon

Morning and Evening

I highly recommend this book to anyone who is struggling or feeling persecuted. Finding God in our circumstances, understanding His love for us and how He desires to develop a trusting relationship with us transcends us from the question of "Why?" to the answer of "WHO."

God loves us. To Him we give all the glory!





Connecting the Dots

It began about three years ago. Bear with me, it's a long story, but I think it's a good one.

I was reading "Chicken Soup for the Mother's Soul" in bed one night and came upon a story entitled "Welcome to Holland." Considering what we were experiencing with Sara Ashley, the story was very relevant to me and I found that it gave me a greater perspective of our circumstances. I also copied it and sent it to a young couple who was expecting a child with Down Syndrome, hoping it would help them too. It would be a few years, but in His time I would find out God's plan to use this story again, connecting the dots in my life to the lives of others and to His purposes for me.



Fast forward three years to this January. In an earlier post about a little girl named Emery Claire, I told you about spending time in a chapel with her grandmother, Sophia. We shared our experiences with our children, our fears and struggles, but also our joys and triumphs. And she told me about this precious little granddaughter of hers who is bringing such joy to their lives. I was also prompted to share with her the story I had read three years before, "Welcome to Holland." At the time, I simply felt that I was sharing out of my knowledge. I would soon find out that I was sharing from a prompting by the Holy Spirit. Although I didn't realize that this story was written by a mother of a Ds child at that time, I knew that it would help Sophia as it had helped me. 

After the weekend retreat, she went home and found that she already had the book "Chicken Soup for the Mother's Soul" in her home library. She read "Welcome to Holland" and had the same reaction as I had. She went on to use the story in a speech she will give to a group of ladies on another Christian retreat.

Just a few weeks later, God began laying on my heart the desire to write a book. He assured me of the comfort it would give others, just the way He had and continues to comfort and uplift me and Sophia through things like the story, "Welcome to Holland." He opened the doors for this project, connecting dots to other parents who shared this vision. Everything was coming along grandly until one evening when I read a post by another parent of a child with life challenges. Her post caused me to question this project. I was panicked by a fear that I was trying to make other's pain and heartbreak into a pretty package with a bow on top. Was I travelling down the wrong path? Had I misread God's instructions for me?

I soulfully shared my doubts with several close friends, asking for their advice, and waited for their response. Quickly, emails began shooting back and forth.  Words of encouragement, words of love, and words challenging me to stay on my path.

"Life is about choices," one friend shared. "We all have many pains and struggles. How we look at them and respond to them makes all the difference. I want to find joy and Jesus in my sorrow and struggles ... I want to see with His eyes and become more like Him!"

From another friend, "Everything we go through makes us stronger and better if we go through it with the right attitude and with our eyes in the right place." 

And from my loving husband, "I do not believe for a moment that you are trivializing anything.  What you are writing will inspire families that are looking for hope. Search your heart for direction but listen only for God's promptings."

Then I received a message that gave me the greatest clarity possible, sending chills down my spine. Remarkably, God had connected the dots from three years earlier all the way to that very confusing night. In my doubt and distress, He confirmed for me His blessing on my journey:

"Ever read this before?" my friend asked. You guessed it, the attachment was "Welcome to Holland." Thank you Jesus!

"Welcome to Holland"

c1987 by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



A Refiner's Fire

"For He will be like a refiner's fire or a launderer's soap...He will sit as a refiner and purifier of silver. He will purify the Levites and refine them like gold and silver. Then the Lord will have men who will bring offerings in righteousness, and the offerings of Judah, and Jerusalem will be acceptable to the Lord, as in days gone by, as in former years." Malachi 3:2b, 3-4

The last seven years have been years of refining for me.
God is our refiner. He prepares His people for useful service by taking them from rough stones, purifying them and making them into gold and silver. Sometimes, it takes high levels of heat to completely rid us of our rough edges and sometimes just the warmth of a sunny day. Whatever the case, when He is finished with us, we are always better for it, shining in His light.

I'm a fairly intelligent person. I have always had a gift for spelling well, and what I lack in common sense, God has made up for in book sense. Many things do not come naturally to me, but if I study them long and hard enough, I can get the job done. Over the years I have become very self-sufficient and can take control of and handle most situations. I am a "get 'er done" kind of girl.
However, along with these attributes come the problems. Pride, self-reliance, disdain for other's perceived shortcomings, disappointment in the decisions of others if they aren't like my own, rigidness to change and even feelings of superiority. Certainly not the attributes desireable by our loving God, or anyone else for that matter!

It has only been over the lasts seven years that I have begun to see the error of my ways. And really only over the last three years that I have begun to surrender, allowing God to have His way with me. Breaking down my pride, my issues with control and shaping me into a person more interested in being His servant than a dictator. Although everyday isn't a success, it's a goal for me to stay fully connected to Him, shaped by His loving hands. So what made the change, you ask?

The answer is simple and complex and the same time. As we all know, life has a way of showing us that we aren't nearly as smart and in control as we thought we were. So this is certainly one of the reasons. But the main reason I have surrendered to Him is because He has opened my eyes to grace and humility through my daughter Sara Ashley and through the many children I continue to meet who face life challenges.

As I have watched these kids handle life on  a daily basis, with struggles as well as triumphs, I have begun to notice that, despite their learning differences and challenges, their attitudes remain positive and their contributions to this world are far greater than correct spelling and book smarts. I have been humbled through my interactions with them. Their wonder of the world around them, their kindness to others, their ability to see things with a different perspective, and their sweet spirits have taught me that life is about so much more than high marks, accolades, and worldly success. These are the traits that Jesus desires to have in His disciples and I can certainly take a lesson from these children.

God is refining me, day by day, into a mold that is pleasing to Him. And I am wax in His hands.