Grief

Looking back…

I just spent a little time re-reading Anne’s journal entries from the last few months…

She has come so far. I needed to be reminded of God’s faithfulness because I’ve been feeling discouraged lately. I shouldn’t :-) I realized today that God has restored Anne to exactly where she needed to be to come home. She can sit, and she is emotionally stable. Those were my two main prayers for Anne, and God answered.

I guess I’ve just been a little sad watching Anne at home. She’s so docile… and simple. Anne used to be volatile and complex, so it’s tough for me to have such a different child at home. I miss my passionate Anne…

God is good. If Anne were her passionate self, I know she wouldn’t be handling her physical limitations as well as she is now. I just pray that Anne will continue to progress – that I will one day see my passionate and complex Anne again. I miss her terribly.

…trying to focus on God’s faithfulness -kathryn

Wow,

…Anne is home. Anne has really done so well adjusting to home – even with the juxtaposition of having many new experiences for Anne mixed into the familiarity of home:

  • she has learned to sit on her own for 5 minutes or so before falling over.
  • Anne has continued to eat really well, although she still makes an enormous mess :-)
  • she is sleeping better here than at the hospital
  • she seems happy and is only fussy when hungry or constipated
  • we took her to the pool and she enjoyed a short water therapy session

Canon and Kate have been really sweet and are always wanting to assist Anne. Anne pokes their eyes, pulls their hair, and squeezes their noses, but Canon and Kate just love on her. Tonight Kate said to Anne right after Anne pulled Kate’s hair – “I love you, Anne”. Somehow at 4 years old, Kate understands where Anne is in her recovery and is willing to be on the journey with Anne – only God could make that happen.

Pray for Kathryn – it has been hard: While at the hospital, the comparison was the miracle of Anne moving from the stillness and silence of the PICU to Anne’s speech and movement while at inpatient rehab . . . . but at home, we are much more reminded of (and mentally compare her to) Anne’s little person prior to the accident. So we continue to have joy through some tears when remembering the past . . . . but we know God calls us to be in the present with Him . . . . and Anne.

The day rehab program starts on Monday, so our journey continues. . .

Pray that Anne will continue to heal! We have three goals for our stint at day rehab – Reading, Writing, and Walking. Please pray that God heals Anne in these ways.

-eric

Our therapeutic “outing”

Anne on her outing

Anne did well on the outing. It was emotionally difficult for me – which took me by surprise… We went to “story time” at a book store. Several toddlers were there. Being around ‘normal’ children highlighted the fact that my Anne is very much a ‘special needs’ child.

We’re still in limbo. We don’t know what Anne’s endpoint will look like. She’s still very much “progressing” in her recovery. It makes it hard to grieve, because if I grieve what Anne’s lost, well – she might gain it back a few months later. We just don’t know.

I strive to stay thankful for the present. God is so faithful and so good to our family. Yesterday, Canon said, “Mommy, today has been a blessed day. God is humble enough to do kind things for me.”

Good words from a 7-year-old boy.

-kathryn

Feeling weighed down…

I’ve put off updating the CaringBridge site because I don’t feel like there’s anything exciting to report… I guess that’s the nature of Anne’s injury… recovery is slow. I’ve been struggling with impatience lately :-)

I still feel weighed down by the fact that my sweet girl has such a serious injury. Today she looked at a picture of a black dog, and she called it a sheep, and then a horse, but couldn’t find the word “dog.” She has to concentrate so hard to answer such simple questions.

She’s working just as hard physically. Today her PT asked her to bend her left leg. Anne was laying down flat on a mat. You could see her jaw clench in concentration as she raised her left leg straight up, and then after a few seconds she bent her knee in a jerky motion. She repeated this for the therapist a few more times – each time having to concentrate like crazy just to bend her knee.

As I watch her, I feel this strange mix of joy and sadness – I’m so proud of her, but grieved to see her struggle so…

God does give me glimpses of joy. Yesterday evening, a bunch of family came to the hospital to eat dinner together. There was cheerful banter as everyone ate burgers and fries in Anne’s room. Anne just sat gazing at everyone with a content smile. The only reason we were together was because of Anne. That’s a gift that’s come out of this tragedy.

And then today… I took Anne for a walk. Anne can reach up and touch all the buttons for the elevators. I thought back to Anne’s first day in rehab. Her therapist asked her to push a HUGE yellow button. We all cheered as the therapist had to place her hand on the button and she was BARELY able to press it down. She’s come a long way to be able to so easily find and press the elevator buttons! That was a sweet reminder from God.

Perseverance – emotional and physical. That’s our need right now :-)

Please pray:

  1. That Anne would gain endurance and not tire so easily. When she tires, she gets extra emotional, so also pray that she would be able to regulate her emotions.
  2. That Anne would make great strides both cognitively and physically in the next 10 days before her discharge date – specifically that she would be able to sit unassisted and communicate consistently what she wants and needs.

Thank you! -kathryn

Hope…

Anne has done amazingly well following her surgery on Tuesday. It’s hard to pinpoint specifics – she just seems more herself. She’s talking more, holding her body and head straighter – she seems to have more strength in her legs and her hand is not quite as crazy-acting…

For the first time, it feels safe to hope. I’ve always had hope – but only in God’s good character. Now, God is allowing us to see His healing hand in Anne, and that inspires me to hope for greater things to come.

Our days are not so heavy. The heaviness of her constant crying has been lifted. She’s now pleasant. She uses all of her manners (yes mam / no mam) and even has a sense of humor.

The heaviness of uncertainty has been lifted. God has fulfilled our deepest desires for Anne… allowing light to shine in Anne’s eyes and allowing her to speak. I tell her, “God is helping you to get better and better everyday.” She always responds, “Even today, mommy?” “Even today,” I say :-)

Finally, the heaviness of grief has been lifted. They encourage parents to post pictures of their children on the outside of their doors. After three weeks on the rehab floor, I’ve come to a place where I can look at a picture of Anne (pre-accident) and not grieve. So now her door has lots of pictures :-)

Her door with pictures

Jeremiah 29:11

We still have a long way to go on this journey, but I’m thankful for God’s grace to lighten our load a bit. Anne’s smiles and constant chatter produce in us a profound gratitude for God’s mercy. To God be the glory.

Please continue to pray:

  1. For Anne to pass through this phase of oral fixation. She puts EVERYTHING in her mouth. I know it’s a phase, but I need patience to wait through it :-)
  2. For Anne to continue to get stronger. She still can’t sit unassisted.
  3. For Anne not to be discouraged and to lean on God in a deep way.

So thankful!!! -kathryn