"Wrestling with an Angel" The Book

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Friday, May 7, 2010

Letting go is not the same as giving up

A few nights ago, my white t-shirt was soaked with the tears of my wife. She buried her face in my chest and opened the floodgates of her heart as I held her in our bed. Seventeen years of glorious, painful struggle had come down to this night.

“I feel like I have failed him…” she sobbed.

“We have not failed. We have always sought what is best for him. This is best for him…this is best for everyone.” I replied, trying to convince myself in a parallel attempt to comfort my wife.

A few months ago Jake was enrolled in a special school to help him transition to more independent living in a special needs community as adulthood inevitably advances on his life. Much to our amazement, he thrived in this super structured environment.

The original plan was to get him toilet trained, work on his behavior skills, and then transition him back home with respite assistance.

He came home this past weekend for a visit and the original plan fell to pieces. A case worker from the school brought him to the house so we could celebrate his 17th birthday and within minutes of walking through our door Jake had regressed back to the state his original violent, miserable condition.

The case worker stood aghast as Jake messed his pants, crawled on the floor and curled up into a fetal position in the corner of his room. It took three of us to change his clothes and get him cleaned up—two to hold him down and one to scrub and clean.

“He is completely toiled trained at the Center” the case worker defended with a thousand mile stare. “I’ve never seen him act like this before.”

“We’ve never known anything different,” my voice cracking in hope-strangled disappointment.

Most of the visit went well; as well as one can expect with Jake. But the nervous pacing, incessant whining and repetitive compulsive behavior seemed to increase with each hour. As time approached for Jake to return to the school he became peaceful and calm again.

He hugged his brothers and sister; then dad and mom. Before walking to the car he picked up his small computer talker that he wears around his neck and said, “Goodbye”. He waved like the grand marshal in a ticker tape parade and blew us volley of passionate kisses.

I buckled him into the back seat of the care worker’s car. And just like that…he was gone.

For a brief moment I felt like a normal parent watching his 17 year old son drive away to college. Then, in almost a panic, it seemed like someone had just kidnapped our baby boy. Like a good cop and faithful father, I wanted to run after the car, catch the kidnapper and rescue my son.

Then I realized—this was the rescue.

Jake was moving to the best quality of adult life that we could offer. My selfish attitude of, “No one can care for my son as good as myself” faded into the submission and surrender of his future to the care of my sovereign God.

My wife and I sat on the front porch swing most of that day--wondering…grieving…resting. It was almost like a death in the family, except no one came with food and condolences. We were all alone.

I told a friend it was like we had just completed a marathon together, but when we crossed the finish line no one was there to cheer us on. Then we realized the race had been over for quite some time. All the lights were off and the crowds had gone home. There was no celebration, just exhaustion, weariness and fatigue. We embraced each other at the finish line knowing we lost, but still grasping for the hope that at the very least, we finished the race.

I really don’t know where to go from here. Perhaps this will be the final chapter in the book I now have time to write. Maybe I’ll get a hobby, go fishing, make some new friends and do whatever good friends do.

Or better yet, I think I’ll take my wife on a date and not have to worry about getting a call from the neighbors that Jake escaped the house again and was found wondering the neighborhood.

Maybe I’ll spend some quality time with my other three children who have been so patient and generous with their dad’s focus on Jake through the years.

Whatever I do, it will be very different than what I have done for the past 17 years. On one hand this is good—I have a lot to catch up on. On the other hand this is nearly impossible—as Jake has shaped my very character and purpose throughout most of my adult life.

Either way, I know this winter of our life is coming to an end. But at the same time a new season is blowing in like a spring thunderstorm. The storm will end soon, followed by milder weather, greener grass and lots of flowers. And perhaps now I will have time to walk with my wife, hold her hand, and smell them all.

29 comments:

  1. Grace for the moments, help from above. May God strengthen you for each day. He knows the end from the beginning. Praying for you, the J's

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  2. I'd just like to say thank you so much for this wonderful beautiful, sacred insight into your family and your life, you have a God-given gift for writing in a most God-honouring, humble and honest way. Thank you...

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  3. I am cheering at the finish line, as I'm sure many others are!

    It's a difficult transition when any of our children grow up and leave the nest and have their needs met by others. I found it difficult, and I'm sure that's magnified in Jake's case, but I hope that you and your wife will soon be able to rejoice in God answering the needs of you both and your family, including Jake, in this way.

    You have not in any way failed him. Your journey and God's grace and provision for you are amazing and God-glorifying, and they continue. Blessings to you and yours.

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  4. I am a 44-yr old dad with a beautiful special needs 12-yr old daughter. My wife and I identify greatly with each fine nuance, i.e. thousand-mile stare, fatigued, marathon, and no one but ourselves. We've not yet completed the race, but it's nice to read your blog posts to know we really aren't alone. Keep up the great writing, but stop reading this and go play some ball and wrestle with your three other kids.

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  5. Thanks for your sharing. I've only read a few of the more recent entries, but it's always encouraging and inspiring, and also comforting to know that there are others who understand the life of a carer.

    My little (!) 27 year old autistic sister has just moved into supported living accommodation on her own due to my mum being diagnosed with lung cancer and her need to recover following a hip replacement; it is so hard for our family as there's always that “No one can care for my [sister] as good as myself” feeling that you so rightly mentioned. But, thank you for the encouragement and reminder that God has His timing and that we are also learning to release her into His care.

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  6. The ending sentence is the best idea in my opinion. This is the first time I read your blog. But even if I read it thousand times, I would never be able to feel as if I were completely in your shoes. In the midst of drastic changes, in the midst of the calamities, I believe that we should cherish the moment that God give us. Otherwise we are just ignoring the blessings being bestowed upon us. King Solomon said in Ecclesiastes 3 that there is a time to laugh and a time to cry. I am sure that you and your wife have spent countless times crying for your beloved son. Since he is no longer at home, there is no point to continue grieving. While this may be easier to be said than done, I believe now it is your time to laugh and enjoy. Pray for Jake. I will pray for him tonight before I go to bed too. Then pray that God will teach you to cherish the present moment He is giving to you. If you pray, I am sure that He will teach you so. Give your wife a happy date. Call all your sons to whom you probably have spent less time than Jake home and enjoy a good meal together. I am sure you have a lot of better and more pleasurable ideas than I do. Trust in Him. Trust in the rewards from Him. Our Lord Jesus promises us an abundant life. But we must never wait to receive it patiently. Just learn to exploit and cherish your increasing spare time. I believe that in the midst of such a situation, God can give you and your wife the peace and happiness that the world cannot understand.

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  7. Ecclesiastes 3 is a great bit of wisdom here. The above commenter was wise to bring it up at this time. Well done, good and faithful servant!

    I just want to say that my ADHD son has ugly fits at home, but would never do so in public. The condition is much different, but the same principal could be at work, I wonder? At home, don't we all behave at our worst, because we feel safe? I don't see Jake's improved behavior at the school as a sign of parental failure. You did love him far more than they ever could! You were right on with that. And you are right on in sending him for some help with adulthood.

    God bless you! I will remember your needs and pray much! I haven't stopped thinking about your family since running across your blog a few weeks ago.

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  8. God bless you and all your family.

    Life is full of "times". As mentioned by Bungo, times to laugh and times to cry. The older I get (I'm in my 60s) the more I realize that I must live in gratefulness for the moment. This moment. This right now moment.

    You and your wife and your other children have "right now" moments. And your family will have "right now" moments with Jake. Whichever moment you find yourselves in...that is the moment in which you find joy. Each of those moments is a gift from our Lord and Savior.

    Live in the joy of the moment!!

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  9. Change is difficult. My mother just had to move from assisted living to a skilled nursing facility. Starting the second day, she actually seems happier and more content than before. And it was so hard on the rest of us to move her! We are amazed at God's grace - once again. Praying with you!

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  10. Greg -
    I feel kind of silly typing this, as we have never met or talked or really communicated in any tangible way, but... my heart is with you guys.
    Praying.
    PWM

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  11. I wish I could give both of you a hug. I'm fighting tears right now. Can't imagine.

    Jake is only 3 years older than my oldest autistic son, and while mine is "higher functioning," I still can't imagine him being ready to live independently. I'm pretty sure he'll need some sort of assisted setup. And his rages are getting harder and harder to take. And yet I know, when the day comes to let him go, it's going to be so hard. I can see a million ways that I've failed him already...and yet we're all only human, doing the best we know how to do as our fallen selves, leaning on the Lord.

    My second autistic son will probably never live independently either, but I have a few more years to prepare myself for that.

    Anyway, this wasn't supposed to be about me. It's just my fumbling way of saying that my heart and my prayers are with you. I know, from the glimpses you've given us into your world, that you've done a good job with Jake. Now it's time to let yourselves relax, and grieve, and work through the inevitable mixed emotions that are coming. Give yourselves permission to grieve, but also give yourselves permission to enjoy your newfound freedom. You have loved well, and you are still loving well...just showing it differently in this new season of Jake's life and yours.

    I hope you will continue to write about life (when you feel like it), so that you can help us prepare for this transition when it comes in our own lives. Many of us look forward to hearing about it as you express it in your beautiful way.

    God bless you all.

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  12. Stumbled upon your blog a few weeks ago and have been blessed by your sensitivity and caring in your writings. You have not only related what has happened, how it is affecting you and your family,but you have left us, the reader, with the hope that, while you are grieving your loss, you will survive! The love of the God shines through!

    We have 2 grandangels with autism - one very high functioning 10 yr. old; the 2nd a two year old with moderate to severe autism. There is so much I still need to learn! I've read every comment and there is great encouragement and support for you and your family. You'll be in my prayers when the Lord brings you to mind! Keep writing - you're such a blessing!

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  13. I've started to post comments on many of your posts but then I just feel silly, not knowing you and being unqualified to weigh in. At the end of this one I knew if I were your neighbor and read this, I would definitely bring you a meal or some movie tickets, something to cheer you on. A comment will have to do.

    This weekend Mike Erre, a pastor from California, spoke at our church and we actually thought of you. He has a son with Down Syndrome and talks about "staying thirsty". I'm not sure if his podcasts from his main church mention his boy also, but we really liked this week's sermon. Here's a podcast if you're interested.

    http://www.ajesuschurch.org/teachings/teaching?id=755&c=41

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  14. Your honesty and vulnerability here pierce us all. It leaves me not knowing what to say, but feeling compelled to say something--"great job, Dad!", and "you've done the right thing", and "your courage inspires me to do hard things, too."

    But in the end, I'm praying to God, thanking him for parents like you, who love and let go and teach the rest of us how that feels. May he rain down his richest blessings upon all the members of your family...

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  15. As I read through your posts, especially this one, I keep thinking of the parable of the talents. You have been faithful in what God has given you! The words "well done, thou good and faithful servant" keep resounding in my heart as I read. We are just at the beginning of this road with our son and your story gives me courage. May God bless you and your family.

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  16. This post is profoundly moving. I praise the Lord for giving you and your wife the faith to sustain you through all of this, and through the next chapter of your lives.

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  17. Greg,
    My heart goes out to you and your family. My girls are about the same age as your son, and I understand the grief that accompanies the transition to "adulthood" (whatever that is). May God comfort you and give you the strength to carry on in your new role.
    Sue Hume

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  18. Greg, my heart goes to you and your family. Know that God will always guide you and see you through. Will be lifting you in prayer.

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  19. You did not fail- you gave it everything you've got and got him to a place where he is making progress and obviously feels secure. The finish line may not be the one you expected, but it is the one God had planned for Jake from before he was conceived. Prayers and hugs.

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  20. God bless your family, prayed for you.

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  21. I have never been so thankful for a blog in all my life. Your life and writings are profound, and I find myself praying for your family, even though I've never personally met you. I don't have any children, but I can only imagine how much your blog has helped so many parents. Thank you for sharing the difficult things. And thank you to your whole family for leaning so heavily on God and for letting the world see that.

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  22. Brother,
    Eventhough I have not met you I feel as if you are reading my mail. We feel the same things that you have expressed. I am glad that you are on the other end to show me that there is hope, and movement and that your son is doing so well at his assisted living. I know and feel the frustrations that you have felt. our daughter is 4 and on the front end of those times. thanks for sharing your lives as an encouragement. I have not been so blessed by a blog I think. Look forward to every new post. Keep leaning into the everlasting arms!

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  23. I prayed for your family today. Lamentations 3:22-23

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  24. I've been a silent reader of your blog for awhile, encouraged and inspired by your words and lives. If I could return any encouragement to you (since you're too far for a turkey pot pie), it would be this - I pray that you don't feel guilty for feeling relieved.

    Maybe you don't. Maybe that's not your issue.

    I just remember seeing that in my husband. He had felt/been responsible for his (mentally ill, alcoholic) mother for years. When she finally died, he grieved some, but struggled with guilt because he actually felt relieved.

    Hurray that Jake is happy and successful in his new environment! You prepared him for that with your years of love and faithfulness. Hurray for you!

    Praise God, He is faithful. He holds you all in His hands.

    I'm praying for good visits with Jake in the future, and fun, relaxing, ordinary times with your family at home.

    Julie

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  25. Thank you. I came here via the blog Not Just an Ordinary Life (blessedby10.blogspot.com). Your words were so very healing to me, though our letting go was in a very different way. Our daily prayer is to remain focused on God's sovereignty and love and His sufficiency for us in the journey He has called us to.

    Thank you for putting into words the impact of letting go!

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  26. I am a former Sp Ed teacher. I taught ages 14-21 with severe disability. The other day I saw one of my former students, with Down Syndrome, get on the bus with a community support person. He had matured so much and my heart leapt for joy!
    The transition period is such a challenging time, but when it occurs it is a beautiful thing indeed. Be encouraged knowing that your difficult job of parenting has made a difference in your son's life. It may not always be evident but it is there nonetheless. And he knows how much you love him.

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  27. I just happened upon your blog. Please take it from a complete stranger...you must write a book! Your writing is amazing, you truly have a gift. I know there must be many parents out there struggling with the same issues you and your wife have for years. How wonderful and encouraging it would be for them to read your story!

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  28. I have 2 kids with severe special needs and this post challenges me in a very hard way. I believe that I am the best caregiver my children could ever have because I love them more than a stranger could. At the same time I also believe that I have failed in many areas with kids and they have/will suffer because of that. I don't know how to live with these two beliefs simultaneously. The contradiction is deeply disturbing to me.

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