Held

I don’t even pray this time.

Instead I nurse a really bad attitude as we sit in Boston traffic on a bleak, rainy afternoon. We’re on our way to yet another neurology appointment to discuss the poor results of yet another EEG.

I am already picturing the schlep from the parking garage across the busy city streets into Children’s Hospital. Rhema will bolt toward some unknown destination as I hold on to her for dear life with one hand. With the other hand I will drag Hope along as she stops to compliment a passerby on his/her choice of umbrella.

I imagine how much easier this would all be if he were here. Brandon’s been away on deployments and TDY assignments 18 months out of the past 2 years. I won’t pretend: it’s taken a toll. This go-round there’s been an all-out war to keep bitterness and discontentment from taking root in my heart, and I have felt so utterly alone.

This marriage needs him home, but he keeps getting sent away. This child needs this seizure activity to cease, but it will not. I have prayed and prayed, but these circumstances, they don’t change. God, are you with me? Because I don’t see you and I can’t feel you.

And this darn traffic is making us late!

A small voice from behind pipes up: “Mommy, can you feel this hug?”

I glance back and Hope is wrapping her arms around herself. She’s squeezing so hard she’s shaking a little, her eyes are tightly shut.

Just the other day I had a conversation with Brandon about a song called Held by Natalie Grant. We both happened to be driving (albeit 700 miles apart) and both heard the song on satellite Christian radio. It caught our attention because this wasn’t a song with a nice, neat happy ending. By the last note, there is no deliverance from the present pain and struggle. Just a promise that God is here. With us in it all, through it all, holding us. The song made me think of Tahni and her message to me that very day, in the midst of her own grief: “Truly God shows us what it feels to be held.”

“This is what it means to be held, when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was that when everything fell, we’d be held.”

“Mom, can you feel it? My dinosaur hug? Grrr. Can you even breathe???”

And this is how I hold you.

“Thank you, sweet girl. I feel it now.”

 

As we park, I get a text message from my twin:

“We’re here, girl. Gonna wait 4 u in garage exit.”

And this is how I hold you.

 

I’m so grateful. My sister takes Hope so I can devote all my attention to Rhema and the doctor. He sends us to another floor to get an EKG done. Anyone who knows Rhema knows that’s not happening. Still we go through the motions of trying and trying and fighting and finally one of the technicians writes on the EKG paperwork: ‘Impossible.’

We head back upstairs, and I have to wrestle her back onto the elevator every time it stops. (Our floor is the 11th floor). By the time we reach Dr. C’s office with our ‘Impossible’ paperwork I’ve already taken the express train to Pityville.

We discuss the EEG results while Rhema hums and plays. The numbers are not great, but surprisingly, they are better than the last time. That’s something! We go through the list of anti-epileptic drugs we’ve tried, all with no success. For now at least, we’re pretty much out of treatment options.

Dr. C. gives a resigned shrug. “It is what it is.”

I nod. I accept this. “It is what it is.”

Rhema scrambles onto the examining table and jumps up and down, knocking a piece of equipment off the wall. I stand and hold out my hand for her to come down. She jumps into my arms, wraps her arms and legs around me, buries her face in my neck. I turn around and lean against the table. Rhema doesn’t let go, and I close my tired eyes.

And this, my love, is how I hold you.

.

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44 thoughts on “Held

  1. Ohhh. Tears…. I struggle with the same feelings of bitterness, yet my circumstaces don’t even come close. Praying that August 20-something gets here fast.

  2. Every time I read one of your posts I wish wholeheartedly that I was able to express myself a fraction as well as you are, I don’t have the words to convey just how much I can understand and empathize with what you deal with everyday, you would think that in a city as big as Boston with the supposed wonderful medical facilities and resources there would be more out there for Autistic children, I too am from Boston with an autistic child of my own as well as 3 others 2 of which also have special needs…the lack of services and answers for us is appalling to say the least, however the faith and friends and family we have does help to get us through … my whole point in responding to your post was simply this…to let you know I admire you a great deal and you are not alone

  3. Holding you and yours in prayer across the miles.

    Beautiful post. Thank you for letting us know the results — it’s good to hear, at least, that the “is what it is” is better than last time.

  4. Jeneil,
    From many miles away I reach my hand out to you. Your words bring a tidal wave of tears from me. I needed those tears because “I am tired. I am weary.” and I need to knwo that I am being held. Sometimes the “breaking” part of this journey can just be too much. So your words have helped me to cry this morning, and I needed to do that. Your words reminded me that I to am held.
    May the words that you shared today help you to know that you are always held(even when it feels likes you have been dropped). don’t worry we have got you!

  5. Thank you for this beautiful glimpse into the struggles and the small moments of pure love. I hope you can feel the (collective) hug from the many who hold you in their hearts, minds, and prayers.

  6. Your honesty means so much to me. Thank you for taking the precious time to share these experiences.

    God grant me the serenity, right? Easier said than done..

  7. This is such a beautiful post… it made me teary. I can feel the pain and the love in it. My friend, you are a truly gifted writer, able of attracting even people like me who have no children and were raised in an agnostic household. That’s power!

  8. I listened to that song over and over when my daughter misscarried pregnancies three times. It was so heart breaking to hear her say “I’m not just grieving the loss of a third baby, but my dreams of ever giving birth.” WE WERE HELD…… Fast forward eight years and she’s the mom of three kiddos, one adopted (on the spectrum) and two biological. It did not come easy; between the two she gave birth to there were four more sweet angels she lost. In his time we were blessed, when we were suffering WE WERE HELD. I pray that God will see you through the suffering by holding you. He certainly knew what he was doing when he gave you Hope.

  9. Dinosaur hugs from Delaware are heading your way too! Praying as you hold and are held, that you will feel His arms holding your marriage too…
    Sorry the results aren’t wonderful, but it is what it is and better than before…always there is hope and prayers for improvement.
    I’m not a huge Natalie Grant fan, usually don’t even listen, but one day last week on a rare drive alone I heard that same song (wonder if it was the same time?) and it reduced me to tears. I imagine I’ll think of you and your sweet Rhema each time I hear it now.

  10. I honestly do not understand (and oh how I have tried) HOW ON THIS EARTH – YOU – YOU!! – can hold US so tight and comfort US when your world is so demanding.

    I love you, Mahi – You somehow manage, among all you struggle to overcome, to continue to shine a light SO BLOOMING BRIGHT across the darkness to reach those of us who need a lift.

    You are one of His greatest gifts.
    xo

    I know you need the Mister home. I know you have so many emotions swirling around his absence. But you know He is holding you both together so tightly. I know you know. ;0)

  11. Sweet Jeneil, your writing is such a gift to the rest of us.
    I’m praying that you have strength to keep going each day as you wait for Brandon to return. Time sometimes seems to slow down the closer you get to something you are waiting for, so may you have extra grace for next week.
    We’re cheering you on as you round the bend!

  12. Hugs and prayers to you guys as you walk this road. Praying for encouragement and moments where you feel secure in God’s great “hold” even when things look impossible.

  13. Thank you, thank you thank you. Because I hurt for you, with you, and alongside thanks to the internet. We’ve been in a very hard place lately that just doesn’t wrap up with a neat little bow… and things sound trite… thank you for reminding me that we’re… I’m… Ryan’s… Rhema’s… HELD.

  14. Oh, my heart is heavy for you. I can feel the weariness. Tears are in my eyes yet again, when I read what you write my own faith is strengthened. To look and truly SEE, when prayers go unanswered. To admit your failings but still allow yourself to be held. Always praying for you…

  15. God is love. And He loves us. The Bible tells us so. Everything thing else is the enemy trying to convince us otherwise.

    But, oh, how I understand what it is to give in to those thoughts. My husband is a sailor (Navy) and is also almost never home. My two almost three year old has autism. It’s just so hard. Day in and day out. Plus, I have my 4 month old. The appointments, therapy, doctor visits, nursing, cooking, cleaning, laundry, and life itself and all it’s demands. And still trying to give your best to God with praying and spending time with the Word and etc. There aren’t enough hours in the day. And our patience is finite as much as we try and pray for otherwise.

    Tomorrow is another day. Another day to pray for love, direction, guidance, patience and all other fruits of the spirit. Yesterdays sins and stumbles will be wiped away if you ask Him too. That’s the beauty of His grace, of His love.

    One more prayer being said for you and yours tonight. God bless.

  16. Stretching out my arms from all the way over here to hold you too. Hoping that with all these arms holding you, you are lifted when you feel low. Beautifully written, as always. I can’t even wait for your family to be back together again, so I can’t imagine how you must feel it.

  17. Just found your post on another one of my favorite bloggers Diary of a Mom…. How beautifully written your post is….. so truthful how in all the ways we feel God’s love, the most profound are the ways he brings his love to us through others. When someone’s small act of kindness eases our day or just when we think we can’t take anymore arms close around us and let us know we are supported. And just when we think our children are so lost – a hug and a smile remind us that they are not. I hope you feel God’s love very close to you today and I will pray for your family to be reunited very soon.

  18. He is near. Am I satisfied? I try to be, but I lose it so quickly. There I am again, left wanting more. I’ve heard that the secret to being content is not in having more, but wanting less. I guess that’s what fasting is all about. Less of me, Lord. Satisfy my soul with your nearness.
    Thank u J. Love u.

  19. You “hold” others when you give them your story. Yes, there is a need, sister. It is clear to me; I pray God makes it clear to you as this next season unfolds. As I’ve written about before and will reflect upon more tomorrow in a post, we’ve all been “entrusted” with a story. We’re the best ones to write it; in doing so, I think we help to solve the problem of pain. You’re obviously helping so many.

    Keep to it.

    peace~elaine

  20. This one is for Dorsey— let me seriously ask u one question— is your daughter a human in the form of God or God in the form of human???????!!!!!!!!!!!!!!!!!!!!
    whoever she is may ALMIGHTY BLESS HER … She is very strong, patient and daring…… 8……eightyears…. my mother had to wait 1whole year for just one more baby(after 15 years of gap) …….and dat itself was very– well i was with her….. instead she got double treat….. 1boy 1girl……twins……God has finally given your daughter 3sweet fruits of her dream..herpatience….wishing u guys alld best…

    as for this post ……………….strangely very touching

  21. Pingback: Hug machine « Autism In a Word

  22. Pingback: Do this « Autism In a Word

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