Painful Joy. This was the expression I saw on Anna’s face as she awkwardly clutched the chains of the swing, as I pushed her into the wind. Her one hand gripping the chain, while the other arm was wrapped around half touching the other chain. She was not fully aware of the correct way to feel secure—but oh the joy, to feel the push. She started to laugh so hard that sound stopped coming out, and it was then I saw a look that could have passed for pain. It is a mixture of both fear and pleasure. This painful joy state is not uncommon for those of us who have special needs children. Our children can become over simulated by the simplest things. It’s like happiness without the benefit of full understanding. While others watch the joy of it, we are aware of the pain. It’s a stimulus that has no shut off regulator, and we become responsible for the pacing of it.
Anna’s spontaneous laughter flows often lacking understanding. We smile and laugh with her, but its superficial. Sometimes we stand as a silent witness, as others look for understanding, wanting to simulate her more, because everyone loves laughter. Quietly we wait, and in the moments when all have gone, we offer her something much more valuable than fleeting fun; Commitment. Sorrow has presented to us opportunity to learn lessons of commitment that only come in the trenches. There is one thing I’ve learned in these places, and that is very few can walk with you in them. Laughter and Joy take on a much deeper meaning, because sorrow has plowed deep. You see beyond the surface, and do not always feel like the answers are necessary for going on.
It’s nice to be on the playground now and then, but I wouldn’t want to live there. Laughter works like a medicine, but pain carries with it the enduring quality of patience. Anna’s uncontrolled laughter is a reminder of how everything is not as it appears. I stop the swing and calm her and the significant of our day at the park will be more about my presence with her, than what we did. A.B. Simpson expresses beautifully the fruit of painful joy in this way, “There is a shallow, superficial nature, that gets hold of a theory or a promise lightly, and talks very glibly about the distrust of those who shrink from every trial; but the man or woman who has suffered much never does this, but is very tender and gentle, and knows what suffering really means. This is what Paul meant when he said, ‘Death worketh in you.’”
We can not separate ourselves from the shallow things of life. There presence with us points us to the painful things we can not change. How we respond to them, is more important for the present, than finding answers. I will continue to push my daughter on the swing, because these simple exercises of play show my other children that we choose to participate in LIFE, even though life does not always give us back an equal return for our efforts. We are learning that commitment has a price, and it will not be supported by anything less than Faith. This painful joy must have been what Paul also experienced in this life when he wrote;
“As sorrowful, yet always rejoicing, as poor, yet making many rich; as having nothing, and yet possessing
all things.” 2 Co 6:10
We will go as far in our faith, as we seek to want more than what we see with our eyes, hear with our ears, or touch with our hands. Anna offers this gift daily to us. In her non-verbal way she shouts, “I believe and trust you!” Her only requirement is our nearness. Does my own heart say this to my Heavenly Father, even in the midst of troubles and trials? When swung into the air of unexpected circumstances can I rest in my heart in the faithfulness of the One whose pushing my swing?
Anna will be turning 18 years old soon, and when most young ladies are growing in understanding and maturity, learning how to handle the complexities of this life. Anna could probably be seen at our near by park, being pushed on a swing, simply holding on tight in rapturous joy. Her mother is coming to appreciate the beauty of this painful joy and this keeps her pushing, while resting in His love.
At the park with Anna, she is 21 years old now. 2011
Anna reaches for my hand, and then brings it to her mouth about the time a friend walks up to visit. already know what Anna wants without words; a drink. I give her my “You can wait” look, because I know what prompted this sudden desire. Some one passed by with a drink in their hand, and to Anna that means thirst has suddenly descended. My friend greets me, and then gives an affectionate smile to Anna. Anna wants to hug her, but I firmly hold her away saying “No” Anna’s hugs could be harmful! She‘s a very strong 15 year old, with a young mind; I have seen adults taken down by her loving affection. By this time, my friend has moved on and I’ve noticed the drool running down her mouth; “Whitney, would you get me a paper towel please.” The towel will be soaked before the evening is over, and part of me with it.
There are many things about caring for a special needs child that both parents and siblings do not give much thought to after a while. This is part of living with weakness, but not being overcome by it. There is a special grace given to those who have learned to accept the limitations of this weakness; it’s called “liberty.” So, how is this liberty in limitations possible? How does one have an overcoming life amidst weakness?
This freedom in weakness has not come overnight to our family, but has been a daily learning of how to yield, and yet still press on. Others have often observed that my older children seem to have a greater sensitivity, and have naturally concluded that Anna must be linked to this condition of heart. I smile inwardly, knowing that Anna did not change us; instead, she exposed us. Her limitations and constant needs showed us our own inadequacies. Liberty came to each member of our household only as we saw our lack (i.e. selfishness, independence, laziness) and turned from it to the Father. Therefore, Anna brought us the opportunity that ease and comfort do not readily afford; however, you do not have to have a special needs child to obtain this type of grace! I have met many with a great capacity to grow in this grace, having limitations far greater than my own, but miss seeing God’s purpose in it.
There are three aspects of grace that cover our own personal journey. They are like chapters in a book with many pages. The book is not finished; it’s more like a journal for recording tears and triumphs. God’s mercy and grace has enabled me to more readily turn my pen over to the Father; allowing Him to write His thoughts on the pages that still remain blank. These chapters are still being written, journals revealing our own continuing discoveries of faith, hope and love.
FAITH is the substances of things hoped for, the evidence of things unseen. This describes the beginning and progression of our passage. We all long to grow up in Christ, and then, unexpectedly, faith comes knocking on our door, looking far different than we understood. Before Anna came to us, I saw faith as “moving mountains”. In the years that ensued, I learned faith was built on the common, ordinary stuff of life: changing diapers, washing dishes, laundry, and other daily dirty duties. Since Anna did not fit into the “normal” process of life as we knew it, we had to learn to look beyond what was seen and not grow weary in well doing.
One thing particular about living with a special needs child is that repetition is the way of life. The next step for your child is not in the text books, and when it comes, it takes you places you would never have gone on your own. Alan and I will never forget the time Anna learned the new skill of opening a door (at the age of 6 years old). We woke up one morning to find her gone, and as her little soul embarked on this new adventure, ours turned into the sober realization of the magnitude of what “progress” would mean for Anna. She was barely walking then, and managed to walk /crawl across our creek, past a road, and half way up our neighbors drive way on a cold, misting February morning. Greater limitations were immediately set in place, out of love for her. One thing I have learned about FAITH, is that it does not always look like expanded horizons or greater responsibilities. Sometimes it comes in the fog of not knowing what to do, and placing trust in the Father to guide each step you take. It may come in the form of limitations, sent to show us our need for HIM. FAITH is not for those who want comfort, but those desiring to be conformed into HIS image.
HOPE maketh not ashamed, because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us” Romans 5:5. Hope’s children are Anticipation and Patience. Anticipation allows the heart to sing, while patience waits with trust, even in the tightest places. Anna has been a wonderful example of one that needs very little space to be happy. Her needs have made my physical world smaller while expanding my heavenly vision. In the earlier days of my care of Anna, I felt like I was missing out at times; this mind set held back many treasures of learning. HOPE looks up to the unseen One, whereas our own tendency is to look around at others. Paul warned of the danger of comparing ourselves among ourselves; doing this shows that we lack understanding. The reason HOPE is not ashamed, or disappointing, is because life becomes centered around the Lord rather than other men. One finding hope in God, is like a star shining in the night, amidst pain, suffering, or trials. The world looks on in awe asking, “Tell me of this hope that allows you to keep your head up in the midst of your suffering?” HOPE is a beautifying work that Oswald Chambers expresses in this way, “Have your standpoint in the heavenlies, and you will not think of the afflictions but only of the marvelous way God is working out the inner weight of glory all the time, and you will hail with delight the afflictions which our Lord tells us to expect (John 16:33), the afflictions of which James writes (James 1:2), and of which Peter writes (1 Peter 4:12). Our Lord presented truth in “nugget” form, and in the Epistles, the Apostles beat out these “nuggets” into negotiable gold.” HOPE is not for those who want happiness, but are only content with whatever HEAVEN provides.
LOVE bears all things, believes all things, hopes all things, and endures all things. Love never fails. I Corinthians 13 shows us the excellence of love in action. Love is like the ribbon that ties both Faith and Hope together. When pregnant with our second child I wondered how I could love this child within me any more than my first. The process of nine months and then the labor produce a capacity to love that went beyond my understanding. A verse that has become special to me in Psalms 119:32 “Enlarge my heart that I might run the way of thy commands.” The love we seek here is given by God alone to those who yield to His hand in all things. My older children probably had to face in the earlier years with Anna greater limitations than their peers. It was easier to stay at home, than go out to eat in public or to a home school field trip, especially before Anna could walk on her own. We look back, and have noticed that the greatest struggles that they had to deal with (or any us still deal with) was not what others would think. It was not the fact that we were still potty training at Anna’s 15th year, or constantly cleaning up after her messes, but the little things that invade every home. It was the misplaced brush or socks when it was time to go, feelings of not being understood, or failed expectations. Grace was abundantly there for Anna because we saw our lack from the beginning, and expected nothing for ourselves in the giving. But it seems that the true love of God reaches into the cracks and crevices of our lives showing where SELF has not surrendered to His heart. Love is not for those who want RETURN, but are willing to REPRESENT His name.
In closing, I really do not mean to over-simplify overcoming, but it really is uncomplicated to those who do not mind counting the cost. The cost is YOU, and to whatever degree you allow Him to reign in your heart. There was a time that I thought knowing a few more people who had special needs children would help us, because they would understand and could help. The sweetest gift I received from the Father was to find no one, so guess where I ran?
“I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh form the LORD, which made heaven and earth.
“You just do not understand…” I have often heard from sisters who are married to unbelieving spouses, parents of prodigals and from those with needs to deep for words. My heart wonders if they have been chosen for experiencing Him in a way only given to those who have no where to turn. Will these special ones have the privilege of being taken under the shadow of His Wings? Often these places that have set boundaries around us produce patience, and when allowed to work, we find ourselves wanting nothing because we have all we need in HIM.
So with delight I will take my seat next to Anna, wiping her drool and willingly entering into her limited world. Faith, Hope and Love have been birthed within my heart and expanded my world allowing liberty in limitations and strength for weakness.
When God looked down from heaven and saw Angela, Whitney and I, He called the angel Michael over and said, “Anna.” I can see Michael grinning and raising his golden sword upward, shouting a victory cry across the sky and the enemy heard it and realized that God had given some family Anna. Anna has been a gift from God, transforming an average family into one that became an unified body of soldiers. Anna came into the world quietly, but made a big ripple. Since Anna was unable to walk for the first six years of her life, I became her feet. As I lugged her around on my back, she brought a new perspective to my world that I could not ignore. No matter where she was, whether on my back or going freestyle, she was ready to take life by the bear hug! I can remember seeing total strangers transfixed like a deer in the headlights, as Anna barreled towards them, arms opened wide. Anna's example of joyful love did as much for me as her dependency on us as a family. Anna taught me the high calling of giving, that comes in every day life. Sometimes learning to give without feeling teaches a perseverance needed in a world that tends to only live by feelings. Anna's needs required all of our help, and the giving of it changed us. These hidden ways that we give ourselves daily are the steel rods that hold in place the cement foundations of our lives. Anna is teaching me that true character is formed in the hidden places of service.
Daniel (18) above with Anna, and a recent canoe trip he took with her this past year (he was 26 yrs old, and Anna is 21 yrs.)
We do not do it often, but when Alan is called on to minister by music or speaking...we go as a family, with Anna. It always surprises me what a testimony our natural love and caring is in these settings to others. Its like "breathing" to us, but others see her needs and see the work involved. Above is a picture of some one that would become a new friend (Paul Springfield), because of Anna.
The following is part of a letter, that I received from another older man from the Bahama's. We met him at a conference that our family attended in the Dallas, Tx area. This brothers word picture blessed me.
We do not do it often, but when Alan is called on to minister by music or speaking...we go as a family, with Anna. It always surprises me what a testimony our natural love and caring is in these settings to others. Its like "breathing" to us, but others see her needs and see the work involved. Above is a picture of some one that would become a new friend (Paul Springfield), because of Anna.
The following is part of a letter, that I received from another older man from the Bahama's. We met him at a conference that our family attended in the Dallas, Tx area. This brothers word picture blessed me.
"Reflecting on the conference Anna always comes to mind and even now Psalm 45:13 "The king's daughter is all glorious within:..The virgins her companions.." I must confess that it was with great spiritual restraint that I did not insist before the Lord for immediate wholeness until I realized the greatness of Her ministry to the Body Of Christ. What a beautiful picture of The Bride: Young, Beautiful, Strong, Full of Life and Love but yet lacking the means to give expression to all that is within except through the loving devotion of family and acquaintances."
Those who have possibly "stumbled" on this page because they are looking for more information on Angelman Sydrome children...don't let the picture fool you. This was the first time we took Anna grocery shopping, and we have not taken her since! :) She had a GREAT TIME...and we thought, maybe it would be good to do this again...in the future. One thing about having an adult child, is that they are constantly growing and learning....advancing more than you know. Anna currently is still moving on mentally, and doing things "out of the blue" that surprise us. It keeps us on the alert!
