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When disappointment comes

March 4, 2013 By 2 Comments

I have spent the past five months raising funds for my son’s service dog. He was matched in November with a dog named Kingsley. We met Kingsley in December and counted down the weeks until he completed his training and could come to live with us.

Two weeks ago, Kingsley came home. Jonathan was supremely happy. His siblings were equally thrilled. But then the unexpected happened. My youngest, who is two, began to exhibit signs of profound allergies to Kingsley. After a few days of watching him worsen, I had to make the choice to return Kingsley.

It broke Jonathan’s heart. It broke mine to put him through this. I was angry at God, whom we all know could have overridden whatever genetic makeup is responsible for the allergies my son has in the first place. Or He could have gifted me with the knowledge of my son’s allergies before allowing me to bring a dog into our home. But He didn’t.

Thankfully, our story may have a happy ending after all. The organization who trained Kingsley has located a standard poodle to begin training for Jonathan. Poodles are hypoallergenic. But we are once again months away from having a service dog for Jonathan.

There is this part of me that feels my child with special needs should be exempt from the disappointments we all face in life. Doesn’t he deal with enough already? Isn’t it unfair that his brain has been altered due to prenatal exposure to alcohol? How is the goodness of God to triumph over bumps in the road that feel as large as Mt. Everest?

I do not have answers to the questions in my heart. But, as I am honest with God, my questions turn to prayer. Deeper dialogue between us flows. And He reminds me that it is my heart He is pursuing and that my son’s special needs are one instrument He uses to chip away the rough edges. Faith does not make up easy answers, but it makes moving forward possible.

Father, give us all grace to trust you with our disappointment.

~ Rebekah

Filed Under: Disappointment, Fetal Alcohol Syndrome, grace, Parenting, Trust, Uncategorized

Heartwork

January 28, 2013 By 1 Comment

As parents of special needs kids, it is easy to get bogged down with therapy and numerous additional appointments. Tending our child’s heart may be swept aside. Not that this is our intention. But there is only so much emotional and physical energy each day.

I felt convicted to pray consistently for God to work in Jonathan’s heart. Not elaborate or laborious praying. Just simple dialogue. I began asking Him for ways to bring up His name naturally to Jonathan. To share one attribute of His character that I see reflected in his heart as well. Weeks went by. I felt peaceful about the way Jonathan began to ask questions and open up more freely with his own thoughts about God.

In the van after carpool one recent afternoon, Jonathan’s questions turned to heaven. What is it like? What if we get lost up there? How will we find God? I carefully explained that the wonderful thing about God is that He knows just where to look and find us. We don’t have to look for Him. He comes to us. Jonathan pondered that. I shared that God is building a special house, just for Jonathan. Sunlight paled for a moment compared to the bright smile that exploded on his face. Really? A home of my own? Do I have to share it? I smile, not missing the quiet thoughts tumbling around his mind. At six, he is the oldest of my four children. He often covers his ears with both hands and shouts we have too many children in our house. He expresses in those moments sentiments I dare not admit out loud, but think quite regularly myself.

Yes, Jonathan, a home all your own, and you only share it if you want.

So how do I get to heaven, he wants to know. I respond that when you die, if you love Jesus and have asked Him to live inside your heart, you go to heaven to be with Jesus forever. Oh. He immediately follows with, have I done that yet? Not yet. Can I do it now?

Absolutely! So he did. And my precious son is now my little brother in Christ.

My prayers continue as I ask God to grow my son’s love for Him and His truth. May all our children choose to walk in the truth and purity and righteousness of our Father. And may He grace us to do the same.

~ Rebekah

Filed Under: adoption, God's presence, Parenting, Prayer, Uncategorized Tagged With: , , ,

Sorrow and Grace

December 29, 2012 By 1 Comment

This year brought the deepest sorrow my heart has experienced in this life. My marriage ended in divorce. Along with the feelings of failure and disgrace came the sorrow of what this means for my children. It does not seem fair that children with special needs must also know the pain of a broken home.

This Christmas season has caused me to ponder the Baby who came to dwell with us. How does this impart joy into all the broken places of my heart? His coming does not make everything instantly better or okay. Life hurts. It is struggle. Those of us parenting children with special needs know this very well.

Yet the One who calls the stars out by name and sustains each with His power chose to come to us. Right into our pitiful mess. Right into our suffering. He chose to suffer with us and for us. Each time our heart hurts for our child who struggles, we join in His suffering. Pain is the pathway to experiencing Christ in all His fullness. Though we may wish to know Him any other way than through our hurt, our suffering is often His chosen instrument to probe and chisel the deepest places in our heart.

My attempts to solo parent push me closer to the throne of grace. I am thankful for a Father who understands what hurting feels like. I am thankful He offers grace to rise up and meet the need of the moment. I pray you find His grace today in the moments when you need it the most.

“Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.” Hebrews 4:16

~ Rebekah

Filed Under: grace, Grief, Uncategorized Tagged With: ,

Strength through grace

December 31, 2011 By 1 Comment

As I pack away our Christmas stockings and ornaments from our tree, my heart reflects on Mary, the mother of our Lord. Her journey of parenting an extraordinary child began with His birth that night in the manger. Did she fully grasp that being the mother of this child would sometimes rend her heart? Could she fathom how misunderstood he would be to multitudes? How awkward and seemingly inappropriate some of his comments could sound?

In the years to come, what did she feel as more of His giftedness was revealed? Overwhelmed? Anxious? Exhausted? Embarrassed? Mary knew this child was unlike any other. The Scriptures say she pondered and treasured these things inside her heart (Luke 2:19).

We who parent a child with special needs know what it is like to watch our child struggle to fit in. Somehow they are always on the fringe, never quite making it all the way to what is considered typical. Our heart bleeds for them. We yearn to rescue them. Often we are bewildered with trying to manage our extraordinary child.

The comfort we can draw is that God is in our midst and His plan for our child will be perfectly fulfilled. His plans may look vastly different than what we expected. But our child shines with a beauty that reflects Him in a way no other child can. This is the grace of special needs.

For the extraordinary child we parent, there is grace for this endeavor.

May you be strengthened with all power, according to His glorious might, for all endurance and patience with joy… Colossians 1:11.

~ Rebekah

Filed Under: God's presence, grace, Hope, Parenting Tagged With: , , ,

Small Things

December 14, 2011 By Leave a Comment

Children who develop typically often slide effortlessly from one developmental milestone to the next. Those of us who parent a child with special needs are aware of the extra time and commitment it takes to help our children grow and develop. Our labors on their behalf make the tiniest glimpse of progress even sweeter. Jonathan’s baby steps of progress are a cause for celebration at our house. I am slowly learning that victory will be realized not only in the final moment of success, but in countless miniscule accomplishments along the way.

Jonathan can finally write his name! We have labored on this for more than a year. Handwriting has challenged his fine motor skills and learning differences as well as his ability to focus. But he has persevered and so have we and now we are celebrating! These days, I find his name written everywhere. In chalk on our driveway. In marker on our deck. On every page he colors. I love it.

It would be easy for me to focus on the fact that his peers have been writing their names for quite some time now. I could become discouraged. I could minimize this accomplishment as a little thing. In this context, the following verse convicts me.

“Who despises the day of small things?” Zechariah 4:10.

I ponder this question and realize the Bible is replete with examples of God delighting to take something with the appearance of smallness and do something enormous with it.

Like choosing one man with a speech impediment to speak on behalf of a nation of men.

Like using a young boy with one small stone to slay a giant.

Like stretching a small lunch of bread and fish for one to satisfy the hunger of thousands.

We serve a God of infinitely immense proportions. When we hand Him something insignificant, He often transforms it into something extraordinary. When He is in something, there is no such thing as nondescript. The baby steps of faith we take today do not go unnoticed by our Father. He is the One Who gives us grace to persevere in the tedious. He is with us in the midst of special needs. We can move forward with confidence in the knowledge that small things are of great use to Him. Nothing is ever wasted in God’s economy.

Embracing the small things,

~Rebekah

Filed Under: Challenge, Encouragement, Fetal Alcohol Syndrome, Gratitude, growth, Hope, Journey, Parenting Tagged With: , , , , , ,

The Gift

October 31, 2011 By Leave a Comment

I am often guilty of seeing my child only as a child with a hidden disability. My focus is on the diagnosis and resulting behavior. I easily forget that my child is a whole person, and so much more than his diagnosis.

A friend recently reminded me to think back to why we chose the name Jonathan for him. While we named him after my husband, we also found the meaning behind the name very symbolic. His name means God’s gracious gift. It seemed very appropriate, given our infertility and our journey to adoption.

His life is a constant reminder that life is sacred. His birth mother was counseled to abort him and she planned on it, but never accumulated the necessary money. God created him, knit every cell in his body together and has a plan for His life, not in spite of his disability, but because of it.

His name reminds me that he is a gift, and that God only gives perfect gifts to His children. While I often feel overwhelmed by his behavior and his needs, these are the very things that push me into a position of total dependence on Christ. The more I learn of His grace and sufficiency, the more I can enjoy Jonathan for who he is.

Every good and perfect gift is from above, and comes down from the Father of lights…  James 1:17

Filed Under: Encouragement, Fetal Alcohol Syndrome, grace, Gratitude, Hope, Parenting Tagged With: , , , , , ,

Free to parent imperfectly

October 9, 2011 By Leave a Comment

Tomorrow Jonathan will begin a new school. He has been attending an inclusion class at a local preschool and it is just not working. The first few weeks seemed effortless. But then the long hours required so much mental energy in order to make it through the day. When he came home in the afternoon, his ability to cope was absolutely diminished. He would sink to the floor and melt down over any little thing that didn’t go his way. This took a toll on him, and on our whole family.

I feel at peace about our decision, but wish we had gotten it right the first time. I hate that he has endured several weeks of being so stressed while we researched and located an alternative school.

I have always struggled with the attempt of perfection. My special needs children heighten that feeling because I so yearn to make things as easy as possible for them. Yet I know that character is built from suffering and out of struggle is born the strength to overcome. So I pray for the ability to cultivate discernment for each child and each need they present.

And I marvel that God, in whose rich grace I stand, called me to parent my children. I am learning to quiet my heart when it quivers with anxiety over how inadequate I feel for this job. The truth is that everything He does is perfect so I don’t have to be.

He continues to show me that His abundant wisdom covers whatever dilemma or decision we are facing. That is more than enough to keep moving our family forward on this road paved with special needs.

“For I, the Lord your God, hold your right hand; it is I who say to you, ‘Fear not, I am the one who helps you.’” Isaiah 41:13

Filed Under: Fetal Alcohol Syndrome, grace, Journey, Parenting Tagged With: , , ,