Wednesday, July 11, 2012

One new day at a time

The sun comes up
It's a new day dawning
It's time to sing your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes

Bless the lord oh my soul
Oh my soul
Worship his holy name
Sing like never before
Oh my soul
I worship your holy name
-10,000 Reasons, by Matt Redman

Life in a crisis is exhausting, but adrenaline, caffeine and the miraculous grace of God can carry a person through rough waters for a long time.

Then the crisis is suddenly over. And life moves forward. Ready or not.

Normal comes pressing in, and then the real work starts.

Since Ava's death, needs that had been on the back burner have emerged to be dealt with and this past week I've felt the weight of many mundane, normal things that need attention. The house needs work, Matt's work needs work and our dear Grandma Harms is moving to St. Louis in a few weeks. There's a lot of life happening.

Elizabeth needs structure to her days and because of her learning disabilities, needs to be directly taught most things that typical 6 year-olds "pick up" or intuit as they go through their day. Whether due to her oral motor weakness or sensory issues, she has very selective eating preferences (read: limited diet) and yet needs lots of calories to help her grow because we're giving her growth hormone shots every night.  Meals are often a tearful battle and I don't know how to get out of the loop and find middle ground between helping her learn to eat a diverse diet of food that is good for her, and letting her eat cheese, yogurt and milk for every meal.

Ruby is the most emotionally intuitive of the bunch and needs TLC to help her "come down" from her fear about us leaving her without warning.

Last night, Hannah fell down an entire flight of stairs. For the second time. Where are her parents??? We joke that Hannah Mae pretty much raised herself last year and, well, she was pretty lenient on herself! So now she needs some clear boundaries again, and that takes time and focus and commitment from tired parents.

Normal is hard. It's good and sweet, but it's hard to do day after day through the fog of grief and loss, even when those feelings aren't always at the forefront.

So we walk forward through the fog, and still manage to enjoy wonderful family times, doing things with the girls that have been pushed aside first because of Elizabeth's fragile health, and then Ava's. On Sunday, we took them to their first Cardinals Game.


Three years ago, Elizabeth had a full blown anxiety attack when the mascot from Red Robin approached our table. The Symphony was a complete disaster. In contrast, at the game, she was so courageous while Fredbird (the Cardinals mascot) danced a few yards away. Her progress is a gift of grace! The big girls have enjoyed their first day-camp experience, and tonight we made it through one hour of a live musical production of Aladdin at the MUNY with our sweet friend.
 

Thank you to all the friends who've gifted us with tickets and invited us to come be part of your life. We feel so blessed. Additionally, Elizabeth's Kindergarten teacher delivered a gift basket full of gift cards and tickets to various St. Louis activities, all from generous staff and families at St. Louis Charter School. Incredible!



So for the first time since having kids, we're spending more time doing fun activities with them than in the hospital. And it really is beginning to feel like a new day is dawning. And He is guiding us forward.

Every day, we breathe deep of God's grace which is sufficient and available in abundance and His faithfulness which enables our trust in His plan. We remind ourselves that God chose Elizabeth, Ruby and Hannah Mae for our family, just as surely as He chose Ava. He is giving us the wisdom we need to parent them well. He has good plans for their lives, and ours.

We rehearse what we know is true both in the drama and intensity of the NICU and in the normal mundane days at home.

In the middle of fun family times, and when we cry at target or feel the pang of grief without warning.

At both the birth and the memorial.

Always.


Lord, you alone are my portion and my cup;
    you make my lot secure.
The boundary lines have fallen for me in pleasant places;
    surely I have a delightful inheritance.

I will praise the Lord, who counsels me;
    even at night my heart instructs me.
I keep my eyes always on the Lord.
  
With him at my right hand, I will not be shaken. 
Therefore my heart is glad and my tongue rejoices;
    my body also will rest secure,
because you will not abandon me to the realm of the dead,
    nor will you let your faithful one see decay.

You make known to me the path of life;
    you will fill me with joy in your presence,
    with eternal pleasures at your right hand.
Psalm 16:5-11

4 comments:

Courtney said...

Have you guys tried Benecalorie by Nestle? It is a calorie supplement high in protein and fat. I mix it into Carnation instant breakfast and milk for my two with failure to thrive. We tried it in yogurt but it made the yogurt kind of grainy and that was NOT a hit around here. ;) I have some if you'd like to try it.

So funny...we were at the Muny Tuesday night--a first for our kids as well!

Sara said...

Hi Courtney, I haven't used benefited. I've used other powders, but will look into that one. Hope your kids enjoyed the Muny, E did great, and then was suddenly out of gas and we left pretty quick. One day we'll coordinate our activities!

Anonymous said...

Although we have not grieved the death of a child I know the feeling of finding a new normal. After Gavyn got home from the hospital our lives were still upside down for months. Adjusting to therapist coming and going for him and starting our journey to find medical answers for our other son Nevin. Then one day it fell into place and we just kept going. Now with baby #4 on scene we start all over again! Just know someone else can relate to feeding issues, breaking down in Target and finding time to fix the house! God gives us strength for it all.

Amanda S.

Anonymous said...

Hi Sara!
I'm friends with Melissa Lindsey....have you tried avocados and nuts? They are really good fats. We had to go to a nutritionist when our's was 3months old. She had torticolis (basically stiffening of the neck and she couldn't turn it). She was also tongue tied on the top and bottom. Through early intervention services we had a physical therapist, developmental therapist, and a nutritionist. Anyway, they gave us all sorts of ideas to get her the good calories and fats. She's 5 now, but will probably be on whole milk forever as she has an extremely high metabolism (wish that was genetic). I'm sure you've tried lots of things, but keep trying!!!! Our doctor told us once that you can't force them to swallow, so try not to have a battle over food. So true! We have to be sneaky to get those calories in! Good luck and keep going! You're amazing!

Jessica R.