Better than o.k.

The husband is away on military assignment for most of the summer.

I posted the following photos on Facebook- Hope’s attempt to keep her Daddy home:

 

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One of the things I already miss are our late night conversations about the rugrats. Just before falling asleep we can’t help but replay (and laugh all over again) at something funny Hope said. Or marvel at the small-but-huge something Rhema did for the first time. It’s not lost on me – that this is a gift. That I have him to share with, all of this.

Lately, as Rhema’s been having some hard days, many of our discussions have centered on our concerns for Hope. What she sees and how she’s processing and handling what she sees at the ripe old age of 5. She loves her sister so completely, she is always considering her, always celebrating her, she is willing to sacrifice for her without reservation.

When Rhema is struggling – really struggling – my enthusiastic, talkative Hope usually copes by cocooning, turning inward, blocking out the sights and sounds. When I try to talk with her about it she is surprisingly very hard to read, seems to avoid the conversation. B and I wonder how she’s really doing. I believe we have been careful and diligent in teaching Hope, and responsive to her needs, but at times I feel the nagging guilt. And we worry – as so many parents do – if we’re missing something when all of our attention and energies are on Rhema. We ask again, Will she be o.k.?

During the worst of Rhema’s EEG hook-up last week, we were keenly aware of Hope huddled against the wall, but we could not help her. Brandon said something about wishing he could shield her somehow. She’s always there – whether it’s an earth-shattering tantrum on the playground or an ambulatory EEG or a Saturday morning speech therapy appointment – trying to carry it on her tiny shoulders best she can.

The technician said, “I know it must be hard. But I think these things make her stronger. Thank goodness for kids like Hope… they’ve learned true compassion and empathy. ”

We’ve heard it before. We’ve said it before: Our special needs children bring out the extraordinary in their siblings. But it was like salve on an open wound to hear it again, from the technician, someone sort of on the outside looking in.

Recently I went to an art exhibit and ran into a woman I’d seen before at Hope’s school. We began talking and she said, “You’re Hope’s mom, right? Once a week I volunteer at recess.” I knew that the woman did not know anything about Rhema.

“Hope is…” She took a long, almost uncomfortable pause before she came up with the word she wanted.

“…nurturing.”

A smile spread through me and I nodded, instantly recognizing my Hope in the word.

“I’m not just saying that. It’s something unique,” she continued. “The other day a kid on the playground was having a rough time. And I watched Hope stop what she was doing. She walked over and quietly held the child’s hand. It struck me how sensitive and perceptive she was to this child.”

An old prayer came back to me:

Will you, God, in spite of me, foster these gifts in her as she lives life with her sister? Will you keep her from becoming cynical, jaded and burnt out? Will she see her sister not as a bother or burden, but as valuable teacher and inspiration? Will you hold her during times of fear, frustration, embarassment or disappointment? Will you give her a deep bond with her sister – one that does not depend on spoken word or touch. Will you teach her to love without conditon and grow it in her, true and patient? Will you bless their relationship to last long after we are gone?

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I am so proud of who she is.

And I proud of and inspired by so many amazing siblings in the special needs community. Not enough can be said about the way they touch the world with their hearts, kindness and wisdom.

She not perfect, my Hope. But yeah, she’s so better than o.k.

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14 thoughts on “Better than o.k.

  1. This hit a very soft spot for me, as you know. What our kids take on…sometimes can seem like too much. I want to shield them too.
    It’s beautiful to know that she has taken on this role outside of your house…that it is a part of her very fiber to care for others. Yes, she will be okay. They all will be.

  2. My heart goes out to Hope. You know that I am a special needs sibling…I have to tell you, it will be okay. The best thing you can do is keep talking to her and let her know it’s okay to express her feelings. Teach her God is a loving God despite anything that happens to her or her family. As the decades now have gone by I realize more and more that was all I needed…the issues with my brother were sometimes difficult, but when you have that foundation, you can bear anything with grace.

    • Oh, thank you Deb. Your stories about growing up with your brother and your relationship now as adults are so insightful and give me hope. God has delicately shaped you through your experiences with him to bless others in a beautiful way, I’ve seen that.

  3. Oof. This made my eyes leak this morning. I believe she will be more than just okay. In fact, I suspect she will be another one who will change the world with her heart and spirit.

  4. So very much to think about. I pray that God will sustain you whilst your husband is away. May He truly be a husband and father in your family at this time.

  5. Phew, life with a special needs sibling can be hard… my son knows this. I think that in the early days our kids either rebel or take it on the chin. My son really battled, however, over time and with love (and therapy) he has turned into a truly compassionate young man. It sounds like Hope has that mothering instinct finely tuned and you are very fortunate to be blessed with such a child.

  6. Your children are fabulous and God was right in sending them to you and your husband. You are doing a great job as parents. It inspires me to be and do better.

  7. I have a feeling that Hope will acomplish great things in life. She will have that special spirit to be able to see and feel real things that others may miss. She is learning patience, undertanding, love, and nurturing as she grows up.

  8. That brought me to tears. My little girl is only four, yet she ends up having so much responsibility helping with her big brother. She is tender hearted too… but not nurturing like your Hope is. She’s had too much on her plate to want to be that way. Hope is a special girl and you are very lucky to have been blessed with Rhema and Hope.

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