Climbing Towards Hope

I was 13 yrs old almost 14 on November 2, 1984. I was an 8th grader in middle school living with my mom and dad and brothers in Illinois, and my biggest decision was if my best friend and I should sleep over at her house or mine on Friday night. My future husband was a sophmore in high school, 14 almost 15 years old. He lived thirty minutes away from me, just down the road from Six Flags Great America, with his mom and little sister. 

We didn't even know each other then.

We barely even knew ourselves. 

Yet, one thousand miles away in Colorado, a baby was born on that day who would one day call us (us!) Mom and Dad. 

Fast-forward twelve years to 1997 and the scene shows my husband and I with our own 4 month old baby Cody, living in Wisconsin. A social worker knocks on our door and after spending five minutes in our living room, she drops off two skinny, mop-headed boys ages 8 and 12, and that is the day we all became family. As a newly married couple of less than two years, ourselves in our mid twenties, with all of four months of parenting experience consisting of changing poopy diapers and rocking a crying baby to sleep, we probably were the farthest from ideal parents that anyone could imagine for these boys. For the almost teenager with autism, Tourette's syndrome, and the beginning whispers of schizophrenia especially - we would not be anyone's first pick. However, at the time, we were the only option available within two counties. No matter - this child had already survived twelve and a half years of storms without an umbrella, and he was not about to drown in the mud puddle of trial and error that we had to offer him. 

I am aware that we were not prepared by the world's standards of what "qualifies" a person to make a difference in the life of a child living with the challenges of disability and a traumatic past. We had no special training and not a whole lot of support from so-called experts... but we did have a home, some extra beds, and a carboard box in the closet full of matchbox cars and a plastic alligator that would appear as treasure to two little boys with no other place to go. 

Nineteen years later, I am constantly looking back and cringing at the hundreds of mistakes we probably made in trying to raise this boy along with his brother, but I know in my heart that we got at least one thing right. We listened to God when He said that we were to show our love for Him by taking care of anyone who had no one. Still, I believe the important part of any story is not what people do or who they are, but what God does and who He is. What we had to offer this child was so inadequate - the times that we failed him and still do are numerous. But God takes anything we are willing to give to Him and uses it for His purpose according to His plan. I look at our story and and I see it is about some very imperfect, uncertain, unremarkable people - and I also see that it is about an amazing God who is so powerful, so compassionate, so capable that He can use our brokeness to accomplish His task exactly as He intended. God knew that baby born in Colorado 32 years ago would eventually become our son. 

When our son reached adulthood, my brother became our son’s guardian and successfully took on the responsibility to mentor him over the last 14 years into becoming a man... a man who serves God and who serves his community and never knows a stranger. At the same time, however, our son is also a man who struggles with his intellectual limitations and with the ominous shadows of mental illness. He, like all of us, lives in the constant tension of who he is, who he wants to be, and the challenges of the obstacles in-between. The past few years have been difficult for him, as his emotional memory and his psychiatric symptoms battle to reconcile with his present life and sense of well-being. It is a painful struggle. 

I have been thinking about my son for hours today, his birth day. My heart is broken because he is spending this day that should be a celebration of his life in the psychiatric unit of an acute care center. I have been crying angry tears because life's circumstances are so unfair and many times cruel. For the millionth time I feel completely helpless in facing the darkness of the terrible things in this world over which we truly have no control. 

However, in the midst of the battle with my feelings, I choose to remember that God is a good and perfect Father. I choose to focus on the promise that He has a plan and a purpose for everyone's life - everyone's. And I choose to believe the truth that even when life's journey takes us down inconceivable paths of hardship and suffering, if we look to God to lead us through, we will get to the magnificent destination where He knows we belong.

So, in my brokenness I am praying to God, and looking for Him wholeheartedly to be at work in this mess. I am determined to be grateful for the many good things in the life of my son, and to continue to be hopeful for an even better future. 

It's very easy to feel the face of God shining on us in the good times. I am thankful for those mountain tops we find where we experience complete joy and satisfaction. However, I'm aware that it is in the difficult climb that I grasp for His hand and ask Him to hold me up in my weariness, and to trade my heavy burden for His lighter one. It is in the hard places that I have truly come to know God, and to find rest for my restless soul. That knowledge is treasure, and so, on his birthday today, I pray that my son will find rest for his, also.

“For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me.” Jeremiah 29:11-13 NLT

“Then Jesus said, 'Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.'"

Matthew 11:28-30 NLT

“Share your food with the hungry, and give shelter to the homeless. Give clothes to those who need them, and do not hide from relatives who need your help.”

Isaiah 58:7 NLT

“Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.”

Ecclesiastes 3:11 NLT

Seeds of Growth

Yesterday, I read a post from an acquaintance who is my Facebook friend. She wrote transparently about her recent struggle to accept the fact that her son who has Down syndrome has now been given an additional diagnosis of autism spectrum disorder. She shared that it has been hard to find where exactly her son and her family fit in, because even within the group of families of kids with Down syndrome that she is very connected to, her family's struggles and challenges have been very different.

This mom's journaling of her feelings brought to my mind the circumstances which I have occasionally found myself in concerning my own son, who also has the dual diagnosis of Down syndrome and autism spectrum disorder. I very much understand the feeling this other mom is expressing about not quite fitting in. I have actually had people disagree with me when I have shared with them that my son has Down syndrome and autism. They have said, "He doesn't look like he has Down syndrome - are you sure that's right?" or "I have lots of experience with Down syndrome and I can tell he doesn't have it." I've usually smiled and said, "Yes, I know some things about him are a bit different than the classic picture that usually comes to mind when you think of Down syndrome, but I'm very confident in the accuracy of his medical professionals!"

As time has passed, and I have puzzled over these random yet personal opinions about my son that have been shared with me without hesitation, God has revealed to me this truth: Isn't it amazing, how even in a group which society lumps together with its stereotypical thinking, isn't it amazing that when you take a closer look at the people who make up that group, there is actually a hugely significant amount of individualism? Isn't it amazing how that individualism points to the TRUTH, so that we never have to believe the lie we are being told more and more often - the lie that says every person God has created does not possess infinitely unique value? I love how God intentionally builds truth into our lives, so that when we look for it to shine a light on the shadow of deception, the truth is right there for us to discover - amazing! "For you were once darkness, but now you are light in the Lord. Live as children of light (for the fruit of the light consists in all goodness, righteousness and truth)" Ephesians 5:8-9 NLT

It's true that my son's facial features are more angular than are typical of Down syndrome. It's true that his behavior most often reflects his autism diagnosis. It's also true that he was created with a third copy of chromosome 21, no matter what he looks like or how he acts. What other people see, does not change who he is. I hypothesize that this might be how the mom of a bi-racial child feels at times, as if her child does not belong to one group or the other, frustrated that her child is not recognized for ALL of who they are, but instead the focus more often is on the parts of who they are not. When all is said and done, I am content that our family is a part of BOTH of the sub-cultures, Down syndrome and autism spectrum disorder. I have found connections with and encouragement from families of each group. In truth, we all have in common that we are thriving and struggling with the blessings and challenges of our children, no matter what labels are attached to those blessings and challenges. In truth, each of us is more than who the world sees and judges. "For you are a holy people, who belong to the LORD your God. Of all the people on earth, the LORD your God has chosen you to be his own special treasure." 
Deuteronomy 7:6 NLT 

My Facebook friend wrote in her post, "When we were first diagnosed with ASD (autism spectrum disorder), I was angry at God, how dare he add THIS to the plate of (my son's) list of challenges. I heard him speak very clearly to me 'I want you to advocate for children with Autism, too.'  I felt so ill equipped, so unprepared. I am now ready to enter into battle, ready to stand up and fight for children with a variety of abilities. A pastor once said to use our fight for good, for BIG, important things, so here I go... Proverbs 31:8. 'Speak up for those who cannot speak for themselves, for the rights of all who are destitute.'" 

I myself believe that my friend, this woman of God, is on the right path. I believe she has recognized and accepted God's truth that her branches are double in number, and that as she continues to nourish her strong roots with the nutrients specific to what her family tree requires, the result can only be that she will bear more fruit! "But the seed in the good soil, these are the ones who have heard the word in an honest and good heart, and hold it fast, and bear fruit with perseverance." Luke 8:15 NAS

Ann Voskamp recently published a blog article titled, How Your Life Really Can Change [and what to do when change comes]. She pointed out that,"The same Jesus who turned water into wine... can change your wounds into wisdom... kids can change, minds can change, the world - your world, can change. And there is not anything to fear. Change is as positive as the promises of God... There is no soul growth without change, no change without surrender, no surrender without wound. Wounds are what break open the soul to plant the seeds of our growth." 

"Wounds are what break open the soul to plant the seeds of our growth."

-Ann Voskamp

I don't know about you, but I have learned to be honest with God about what I am thinking and feeling. I figure that he already knows anyway, and I know that if I open my heart to him, if I seek him out in my struggles, he promises to hear me. So, if I have a question or a doubt, I bring it to God - I pray and I listen and I read his Word and, eventually, he answers me. "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us." 1 John 5:14 NIV

God, I don't fit in... 

"Don't become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You'll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it..." 
Romans 12:22 MSG

God, I don't understand why this is happening and why it's happening now...
"Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely." 
1 Corinthians 13:12 NLT

God, I am afraid that I can't do this...
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." 
Isaiah 41:10 NIV


God, my soul is wounded..."He heals the brokenhearted and binds up their wounds."
Psalm 143:3 NIV
"Wounds are what break open the soul to plant the seeds of our growth." 
-Ann Voskamp

When my soul is wounded, God heals my broken heart with his seeds of growth. He binds me up with his Word to his promises, just as the gardener binds a broken tree branch to firm supports. He strengthens my weakness with his nourishing power and allows my growth to be glorifying to him by the work that he accomplishes in my life. I will forever be grateful for the identity he has given me as his own child, for the invitation he gives to our family to place him at our center, and for the knowledge that no matter the world's opinion, we will always belong to him.