Tuesday, March 23, 2010

A Tight Hand

Phew! It's been 100 degrees for the past few days, that's typical for hot season, BUT we have been having major power cuts for the past three days. Coincidentally our neighbors have decided to do major demo next door so the sledgehammers, drills, generator, and saws have been playing lovely lilting tunes to go along with the heat wave. With no power we cannot run fans and just literally drip in the still air, however, I do believe we have survived! Not sure about our sanity though... The school is also having lots of power cuts which means it's difficult to keep the kid's attention and hard to make progress with the material. But hopefully next week will be better (cooler).

The kids have heat rashes and I try to keep them cool with buckets of water, they have fun with it. Here's Evie in her tub having a great time.

Aside from the weather my mood has been just like this guy on Noah's shirt.
We just keep peddling on, facing the next day, trying to process all the changes in our family. It's too hard for me to write about yet and I think that might be normal. I know better times will come but we are still grieving for our boy. And at the same time rejoicing in who he is, his recognition of us, his smiles. I know he knows me, my voice comforts him, and sometimes he smiles when I come in view and that just makes me feel like a million bucks.

His little body is stiffening and it is harder to hug him. His arms stick out a bit awkwardly in front or at his sides. I still can't get his legs apart enough to fit in the baby carrier. His feet are pointing downwards and he is hyper-reflexive.

And he is precious. The preciousness is what makes it hurt so bad. I want to carry him in my arms, walk into the sunset, and live happily ever after. My friend reminded me that so often we think we are writing our own story in life. We make choices based on what we want our story to be like. But the reality is that God is writing our story and it's a beautiful story. He is in control, and has not left us to figure out our own way if we are His children.

It's hard to see that now because the sorrow actually feels like physical pain to me. I feel responsible for him, the way he is, his future. I don't feel comforted when people say it's not my fault. I don't feel relief. My heart just wants to protect him, yet I sit powerless. I feel like he is in my clenched fist and I don't want to surrender him.

Well, there I did it. I did just write about it. See what a gray, gloomy cloud I am?

But that's not the whole picture. We are not in complete despair every day, rather we are wrestling through these things as we go about our day. I know of only one place to take these wrestlings. To the cross of Christ. To the place where He suffered, where He cried, "My God, my God, why have You forsaken me?" That grotesque place of pain, suffering, and forsakeness was the foundation and cause for the most beautiful thing of all--redemption for sinners, reconciliation with God. That gives me comfort. What good from evil!

So I struggle to open up my tightly clenched fingers and surrender Calvin to our Heavenly Father, to our Savior (who says he has borne our grief and carried our sorrow) and say, yes, I trust You with my son, with my family, our future. Our hands are open, praying to receive the good gifts of patience, hope, and faith from His hand. Because only these gifts can dispel our fear and uncertainty.

Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12

...That according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith--that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know that the love of Christ surpasses knowledge that you may be filled with all the fullness of God. Ephesians 3

A friend visiting and getting some Calvin time.


Christy said...

The picture of little Evie in her cooling dish is perfect. Love the popsicle bottom in the background.

Thank you for sharing your heart - it was so touching and meaningful, and I don't even know you! (though I feel we could be great friends ... please stop by during your next stay in Atlanta).

Becky said...

Dear Kara,
You are often in my thoughts. I want to thank you so much for sharing about Calvin and the struggles you are enduring. You know, the one thing I can observe is that hurting over our children is a universal thing. Just a couple days ago we met with a new pediatrician for Will, and in sharing what to for fussy eating, she shared that she has a Down's Syndrome baby girl, about 2 years old now. I couldn't help it, I asked her some questions, about how they coped, how they handled it. She said it was hard at first but she's learned to be so thankful for the daughter that she has. That she knows now that this is who her daughter was meant to be. I guess it just takes time to work through and accept. But I know it's hard -- my sister still struggles daily to fight for the best therapies and education for her autistic son, my sweet nephew Ethan. I hate, hate, hate to see him struggle. But he is so utterly precious, just like your Calvin.
And I also know that clenched-fist feeling. I'm pregnant with our first daughter right now and when she doesn't move often enough for me, I'm so tempted to fall down a chasm of worry and fear. I know there's not a thing I can do for her and that God is the one protecting her and determining her life course. I HAVE to give up my control to Him or just drive myself nuts. It's funny, sometimes I guess we have two options: Jesus or insanity. :)
In any case, just know you're not alone, that there are many of us who are desperately adoring of a special-needs child and wish the best for him/her and want to make it all better. You are in my prayes, as is your sweet-as-sugar little Calvin.
Many hugs to you,

trmills said...

I'm weeping with you, Kara. Calvin is SO precious, and I know your 'mama's heart' is aching. I wish I could help you carry the load.

And I'm with Christy- Evie is beyond cute in her bucket. Everything's harder in the heat, so bring on the cool water! And Sophie looks like a little fashion model in that first picture- fun pants!

I'll write back soon about trip possibilities. Still formulating over here. And still praying so much for you.

DadnMom said...

Nate and I were just commenting on how Evie is such a 'little Kara' in this picture-she looks so cute! And this grandma's arms are just aching to hold my sweet little Calvin again. We're counting the days until you're back home.
"He giveth more grace when the burden grows greater, He sendeth more strength when the labors increase, to added affliction he addeth his mercy, to multiplied trials his multiplied peace..."

Lois V said...

Beautifully said Kara - the Lord is doing an amazing work in you! What cute pics!

Lorraine said...

Hi Kara,
You don't know me either but I stumbled upon (or providentially!)your blog and read about your beautiful Calvin.I understand your not wanting to research too much at a time. I have a 15 year old daughter with Down Syndrome and when she was born I recieved a book from the DS Association on babies with DS. I knew that she was "mentally retarded" (we've given a word that simply means slow or behind such a bad rap)but when I read it in black and white I just wept. I told my cousin over the phone and she said "just put it (the book)away until you are stronger". Just one day at a time sweet Jesus! She also had a heart defect and had open heart surgery at 6-1/2months and she only weighed 10 lbs!It took me 5 years to be able to talk about her with out crying or at least tearing up. Catch me at the wrong time of the month and I still my tear up!There were times when people would point out a meditation or text that made them think of us and they were of great comfort.But other times you just weep because the burden seems to big to bear. Anyway I won't go on today as I have to go to work but I couldn't leave your blog without commenting. May God "who does all things well" also give you strength, love, wisdom and peace in your situation.

Kara said...

Thanks for your comments. It's always a treat for me when people leave a note!
Christy, we would love to stop by if we are ever in the neighborhood...we just might be in Atlanta this summer. I might be a let down in person though...:)

Becky, thanks for sharing this with us. It is so normal to worry about the baby before he/she is born but thankfully those worries are usually unfounded. I hope all is well with your little one, and I'm glad your blog is open again!

Lorraine, thanks for telling me the story of your daughter. I just read a book that said "you never get to the other side of disability." It seems to be a constant grieving for a very significant loss. I wanted to visit your blog but it is closed, so if you see this you could let me know your email. It would be nice to chat to someone who has "gone before" :). Thanks for your kindness.