These New Days

I haven't written in a few weeks because it's been difficult to put into words what the last month has been like since our sweet girl came back from the hospital. Having her in our home and in need of 24/7 constant supervision and care came as even more of a shock than all the other things that were introduced into our lives the moment she was carried through our front door.

Life has begun to settle into a tentative routine with her and our family is learning more and more what it is like to live with a family member who has special needs and is seriously ill.

She is quite the delightful little handful.

She requires constant supervision since her favorite game is to pull off her oxygen tubing and wave it victoriously in the air. She also delightedly grabs her g-tube any chance she gets and we are constantly pulling her shirt back down to hide it from her curious little fingers. This also gets her favorite toy into her hands to help keep her distracted.

She is smart. She is learning that if she fusses when we leave the room, we will turn around and come back to her. She is learning that crying will get her rocked. She is learning that if she whines in the dark we will sing to her at 1am, 2am, 3am...you get the idea. She had already perfected the art of kicking hard enough that her toe probe flies off...much to her delight.

We have learned that most of these activities take place at night. : S

We are learning to be flexible, open, gracious to each other when the other half hasn't slept that night, patient, kind (in spite of the exhaustion) and that when we are reaching our limit that it's ok to say we need help.

We hit that point 2 weeks ago right after an ice storm hit our region of the south and we were isolated for over a week with no help whatsoever. When a person only sleeps every other night, sanity begins to crack.

 

We had spent the Sunday before celebrating Precious Jewel's and Luke's cousin Cody's birthdays. We'd met for the day to celebrate and just be together.

Nater Mater had brought his newest creation: a cardboard surfboard. He was convinced that if we took it down to the creek he could surf. (We had just watched Soul Surfer and he was begging to go back to the ocean and this time with his new "surf board" in tow).

 

 

His cousin decided she needed to help with the surf board decorations and added her flowery feminine touch.

We now have an 11 year old. It does not seem possible!! 



 

 

Cody's birthday is just 2 days after Precious Jewel's. Nater Mater is convinced that makes Precious Jewel older than Cody and I finally gave up trying to explain it all to him. 

 

Later that night we went to see the City Christmas Lights.

It'd been a long fun day and a certain 5 year old whined the entire time that his legs were too tired to take another step even though he had just stepped out of the car. I had all these grand visions in my head of beautiful pictures of each child set against a sparkly winter backdrop. What I got was this: A picture that I literally had to threaten their lives with if they didn't at least all sit on the same bench together so momma could capture this "happy" moment.
Children have a way of keepin' life real and parents down to earth. 

Sweet picture with the grandparents? I think everyone was just begging to go home.

 One day I will get to go to the town square and stroll leisurely around taking in all the Christmas lights. For now, I'll have to be content with the more drive-by light gazing stage that we're in.  

 

A little peek into our children's lives:

 Mr. Smiles came home from school that week and was so excited to share with Little Mermaid what he had learned about the candy cane. He sat sweetly on the bed next to our little girl and detailed out for her what the colors and strips stood for. He'd tell her a little bit, lick the candy cane and tell her a little more. She was enraptured by his attention and I think the smacking sounds as he worked that candy cane. But, his sweet heart shone through as he told her the clear message of the true Christmas story.

A couple days later we were hit with a rare early winter storm. It's rare for here anyway. I grew up in the Midwest where the first snow is commonly around Halloween. Here though, we don't get snow or ice until at least January or February. It snows so little that no one knows what to do with it and the world around us shuts down.

Now that we have our little girl, our concerns for loss of electricity are great. She is plugged into too many life assisting machines to lose any power. And considering that our electricity has been lost more than once when there was snow or ice was and is a great concern to us. We discussed with our agency and the State our options and came up with an action plan of what to do if this impending storm did hit us. As soon as we saw it moving in, the call was made and she and I were picked up and moved to a different facility where they had plenty of back-up generators to keep her safe.

I had this fierce determination that welled up inside me to keep her healthy and safe until we were given the "all clear" sign.

After arriving at the destination, there was an overwhelming sense of relief and I struggled to hold back tears all day. She was safe. I was safe. But Luke and the kids were at his parent's house without me and I missed them.

Honestly, the other ice storms where we have lost power have been a little challenging but fun at the same time. We made it a big adventure with the kids and without the distraction of electronics the kids got along better. Sleeping all piled up in the living room in front of a the fireplace added to the sense of adventure. We got a little sick of sandwiches and dried fruit, but it was fun. 

 

I came home exhausted 2 days later to a very icy and cold winter wonderland. The snow pants I'd bought all the kids 2 years ago finally got put to use and they still fit! (I'd bought them 2 sizes to big on purpose).

 

Later that afternoon, I took a teary-eyed Good Lookin' on a hike down to the creek. All the kids have struggled with our new total lack of routine. I didn't realize how routine oriented we all were until all our plans have constantly been pulled out from under us in the last 9 weeks. Each of the kids has responded differently, but Good Lookin' has his own unique and challenging ways of letting us know it's been rough. A mother/son hike down a slippery hill to the creek below is just what he and I both needed.

I love where we live. We see several bald eagles every day fly right over our back deck and house. The creek was quiet and peaceful and he and I just sat on the bank, not talking and chucking chunks of ice into the water and watching it melt as it floated away. A lot can be said in the unspoken. 

 

Our motto now is to make plans, but plan on them being changed and learning to be gracious about it all.

We are finally getting some help with her care. We realized when she had been discharged from pre-school that we couldn't continue all of her care and still parent our four kids without help. After weeks of sleeping every other night (I take one night to sit up with her and Luke takes the other) and then being snowed in for 8 9 days with no help whatsoever, I cracked. I told them we couldn't continue what we were doing unless we had more help in our home so Luke and I could simply get some sleep. Our agency specializes in children with special needs and has bent over backward to get us that help and get staff trained to work with her. This allows me to either sleep during the day while some else takes care of her and or I can get out and do the normal things that comes with raising a family with 5 kids.
Everyone who has met her falls in love with her. Once you get over the shock of all her equipment and needs and can look into her deep blue eyes and see the beautiful little girl behind all the disabilities, it is hard to not fall in love.