Even in this

June 27, 2011 by rhemashope

It’s late at night, and I’m dreaming about dreaming. Sleep is a like race, and I need to beat the morning.

As I drag weary bones to bed I hear a loud thud. I check the video monitor: her bed is empty.

Oh no. I rush to her room and…

there she is. She hears the door open, but she doesn’t bother to look up. For the third time in as many nights, she’s peed in the same spot on the carpet. She’s huddled over the mess, silently rocking on her heels as her hands swirl around in the puddle.

I will try to lift her from the mess. She will fight me. She will grab my legs and refuse to move. Eventually we’ll make it to the bathroom. I will bathe her – in the tub I only just scoured hours earlier. I will throw soiled clothes in the washer, fetch all the cleaners, and on hands and knees scrub the rug. I will chalk it up to another sleepless night now that she’s wide awake.

But before I do that, I will stand in her doorway. I will look upon her, seven-year old beauty – so lovely it still takes my breath away, makes me wistful when I think about what might have been. (How close and yet how far away we are from the life I’d planned for her, for us.) I will close my eyes and wish it away. Then I will pray for God to work in my heart – to keep the bitterness and anger and complaining from taking root and blinding me to all that is good. I will try to remember that this is not – and has never been - about me. I will ask for strength to care, to clean the poop and pee day after day, for all of my days with not a word of thanks, if this is what it means to serve and love my God, love my girl, love my family.

I will not deny there is heartache and longing (it will always be there to some degree),

but I will give it to God and still trust Him to do something…

extraordinary.

“But before I go, I want once more to tell you how good He is, how blessed it is to suffer with Him, how infinitely happy He has made me in the very hottest heat of the furnace. It will strengthen you in your trials to recall this my dying testimony. There is no wilderness so dreary but that His love can illuminate it, no desolation so desolate but that He can sweeten it. I know what I am saying. It is no delusion. I believe that the highest, purest happiness is known only to those who have learned Christ in sickrooms, in poverty, in racking suspense and anxiety, amid hardships, and at the open grave…To learn Christ, this is life!” ~Elizabeth Prentiss

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Posted in Uncategorized | 15 Comments

15 Responses

on June 27, 2011 at 4:18 am | Reply Katrina

and something extraordinary He will whether it be here on earth or in Heaven. He will not pass you by.
For all of us reading and for your beautiful family He is already doing something extraordinary by blessing us all with your words, with your faith, your love and your humility. I pray that you will feel as blessed as we all do by “knowing” you.
I am so sorry for your struggles, for your heartache and your weariness and I pray that each and every day God will lift you up, pour blessings on you and to help you soar for you are worthy and you are special and Rhema is so blessed to be your girl.
May you find rest in Him xo
on June 27, 2011 at 6:21 am | Reply Deb

I think of you, and feel God’s strength course through ME. It sounds so hollow sometimes, but I am praying for you. God IS doing something.
on June 27, 2011 at 7:01 am | Reply Alysia

I would do anything to give you one night of peace and sleep. Your unwavering strength and faith is so inspiring. You make me want to be a better mom.
on June 27, 2011 at 9:49 am | Reply Deenie

I FEEL every word you say. I feel it in my bones. I know the battle that wages between longing for what you thought/dreamed/assumed would be and not drowning in the sadness that autism can bring. God must have a plan. There’s comfort there.
on June 27, 2011 at 10:44 am | Reply lisbet

I too want to come to your house and hold down the fort some night so you can just sleep without worrying one night. Or… try to sleep without worrying. It may be because it’s almost midnight where I am right now and I have sleeping problems that keep me awake at night without a child to care for, but I can -feel- the exhaustion. But I always, always feel your strength above all!
on June 27, 2011 at 11:13 am | Reply mother-to mother

extraordinary!!!!!!!!!!!!!!!!!! we will get our hope is in God!
on June 27, 2011 at 11:15 am | Reply tiredmama

Jeneil, How I wish we lived closer as our children seem to share so many similarities. So many of my days, if find myself on my knees cleaning up piles and/or puddles and wondering “Why, Lord, why is this still happening with my seven-year-old???” But, a whisper speaks to my heart, “Child, how much bigger is God’s love for you than what you have for your own children.” Blessings to you, dear friend. My prayers are with you. May you get a night of much needed rest.
on June 27, 2011 at 5:22 pm | Reply Cheairs-Redefining Typical

Jeneil,
I am so sorry. I do not know if these words will bring you comfort but please know that you are not alone, and I am just so so sorry. Please know that by sharing your story that others know they are not alone. Your words and your spirit are just beautiful. My prayer for you is that someone will come to help you at night. That a hand will reach out to help you and you will take hold of it with both hands. My prayer will be that when a friend says, “What can I do to help?” Then you can tell them that you need their help at night so that you can sleep. My prayer is that your someone in your faith community might read this post and also offer to bring you a meal and help you at night. My prayer is that many hands are extended to you and that you grab hold of each and every one of them…this is my prayer for you….peace and sleep.
on June 27, 2011 at 7:09 pm | Reply Rachel

I’m a Speech Therapy grad. student working as an ABA therapist for just under a year and a half, and I work with 3 small wonderful kiddos, each on a different place on “The Spectrum” and about every other one of your posts leaves me in tears. There are days that I don’t want to go to work, or simply feel ineffective, but you live this… your faith in our Creator is breathtaking. It sounds cliche to say that you’re an inspiration, but sharing your story, the goods and the bads, makes a difference to so many people. May you sleep tonight!!
on June 27, 2011 at 10:01 pm | Reply Tanya Savko

Oh, my friend. Praying that you’ll be able to get some peaceful rest soon.
on June 27, 2011 at 11:24 pm | Reply Tom & Family

I admit that I cried when I read this. Sorry! I also admit to much impatience with God in regards to Rhema. My faith has been shakey! I just want you to enjoy the joy that little girl promised you without the pain. Yet, I am fairly quick to remind myself that just about everything I think filters through my own selfishness, my own ego, and such. Who am I to question God?

It’s just … I’ve TRIED to find a purpose for Rhema’s struggles and the ripple effect to the rest of you. The only thing I get out of it is … a reminder of my own blessings. The last thing I want is for the Russell’s tragedy to be a reminder of my blessings! But God is in control, whether I agree or not or understand or not. Maybe I need to get over myself and get back to praying!

All I’ve been able to say for a long, long, long time is … hang in there. And … we are praying.

In Christ,

Tom, Sheri, Allison, and Jacob
- on June 28, 2011 at 6:53 am | Reply rhemashope
  
  thanks tom. God does have a purpose in it all… and this is not a tragedy. everyday Rhema brings joy into our lives, everyday she teaches us and i’m so grateful she’s mine. some days are hard, it’s true. autism is a part of what makes rhema rhema. and that i would not trade.
on June 28, 2011 at 8:38 am | Reply Kelly

Jeneil,
The way you love your family and serve them, the way you love our God and serve Him is such a testimony of His work in you. You challenge me with nearly every post to be a better mom and to seek Him more fully.
I’m sorry for these sleepless nights and the messes.
I’m convicted about my attitude. Parker doesn’t have autism, but he does have sensory issues and he seems to regularly forget where to deposit his bodily fluids and he enjoys poop art…actually he calls it “doin’ spear-a-mints” (experiments) on a regular basis. I struggle to be patient and get really frustrated…thanks for the reminder that this is not about me.
on June 29, 2011 at 9:35 pm | Reply Sheavoynne

Your faith i is so beautiful, strong, and true. If only we could see things as God see them all the time.

Love you Neily, praying for you day by day.
on June 29, 2011 at 10:51 pm | Reply Leah

… makes me wistful when I think about what might have been …

You sometimes write what I am thinking. Daniel, just like Rhema, is so beautiful that I can’t help but just look at him for a few minutes before I wake him in the morning. I see such a perfect face, an absence of snobbery ego and judgment, a boy so sturdy and strong ….. Why can’t the world see all of that first and FOREMOST …. Sigh

Hugs to you, friend,
Leah