disability

The ministry of kindness and daily routine :)

Many people have reached out to me after my last post. I didn’t expect such kindness! Thank you to those of you who wrote and to those who have prayed. I’m very grateful.

I think it’s the relentlessness of it all that bogs me down. There’s no hope for relief. Even finding an occasional babysitter seems like a difficult obstacle. An overnight getaway is almost impossible. Anne’s care is so specialized… it’s tough to find a qualified caretaker with every-now-and-then availability. I love Anne – but she wears me out sometimes ;)

Oddly, what has been the most helpful has been to introduce two other relentless activities into my daily routine! Blogging through the Bible is also relentless, but it has been a fountain to my parched heart. Also, I’ve been running daily. I look forward to both pursuits as they strengthen me both spiritually and physically.

So, even though I sometimes long for a break from it all – what’s helped me the most is sticking with a relentless routine… Go figure.

And by the way… I just published my 50th post on bible365blog.com. I’m pretty proud of myself :)

Brief Update

I’ve been a bit discouraged lately. I get so frustrated with myself when I’m discouraged – because it means that I’m relying more on my circumstances than on the word of God.

I think the main issue that has been discouraging me is Anne’s behavior. She’s just been rascally lately. Very contrary and sometimes… mean. There are a few reasons for this…

  1. Anne has frontal lobe damage. The frontal lobe controls executive function of the brain. This is the area that helps you use good judgment, promotes impulse control and helps you organize and plan. A healthy frontal lobe is crucial for independence. Anne does not have a healthy frontal lobe. It’s just extra hard for her to have self-control and make good decisions.
  2. Also, Anne’s self-awareness has improved. This is good. It is just more evidence that her brain is continuing to heal – but it also makes Anne sad and frustrated.

So, we keep plugging along day by day. When I get discouraged and overwhelmed, I have to force my eyes heavenward and focus on the present instead of worrying about the future.

Worry… I worry that I’m not doing enough to help her heal. I worry that I’m wasting precious opportunities to work with her because I’m tired. I worry. I worry.

What does Jesus say about worry? Oh yeah, it doesn’t help ;) And it’s also not of God. So, when I worry, I pray. That’s all I know to do right now!

All things new

Eric was reading to Anne from the “The Jesus Storybook Bible” again. Tonight’s story was from Revelation and it described heaven…

Anne got real excited and said, “When I go to heaven I want to be a doctor because if anybody that’s sick goes to heaven, when they get there, I’ll make them well again. I will take their temperature and tell them that they’re okay and that will make them soooooo happy.”

And then she changed her mind… “No, I want to be a teacher in heaven.”

But then she said something profound… “But Daddy, what I really want to be when I get to heaven is… ‘me.’ I want to be the ‘old Anne’ when I get to heaven. Daddy, will I get to be the ‘old Anne’ when I get to heaven?”

Wow. What would you say? This is an interesting question. One that I’ve thought about often. Yes, Anne will have a new body in heaven, but her spirit – or soul – will have the effects of having to live with a disability on this earth. Her character will be refined and strengthened from the hardship of having a brain injury. She will be beautiful. Absolutely beautiful.

But I wasn’t with Anne when she asked this question… Eric was. And I think his answer was perfect. Eric said,

No, you won’t be the “old Anne” in heaven. God makes all things new. You will be made new!

I like that. Don’t you?

She’s a keeper.

It happened. Again. Somebody paid for our meal at a restaurant. It always moves me to tears.

I wonder what compels people to do this. Is it the little girl in a wheelchair? Is it how we interact with her? Or is it how she interacts with others? Whatever it is, sometimes, people are moved. And today, one lady was moved so much to pay for our lunch.

I know one thing. I think people instinctively know that there is something wrong with the world when they see a child in a wheelchair. Disability can represent the fact that we live in an imperfect world. But if you look beyond the physical, you’ll see a little girl who brings joy into others’ lives. Her very spirit exudes light and joy. You can’t help but smile when you are around Anne. God redeems the broken.

I’ve reached a place in this journey where my love and gratitude for our “new Anne” is stronger than my grief over the “old Anne.” I wouldn’t trade her. Yes, I think I’ll keep her ;-)

Resting in the moment

Life is made up of moments. In the midst of suffering, the only way to live is-

moment.
to.
moment.

Thinking of getting through the day or even through the next hour can be overwhelming. Living at the hospital following Anne’s accident taught me to live in the present, with my eyes fixed on the moment at hand.

Now that we have settled into our new normal, most of my moments tend to revolve around Anne. So in the middle of the relentless job of caring for a disabled child, if I happen to have a lighthearted, fun moment – well, I sit up and notice. It’s a gift. And I don’t take those rare, oh-so-good moments for granted.

I just had one with Kate. She’s fascinated with Olympic swimming. Have you seen the Swim Team’s “Call Me Maybe” video? We just watched it :-)

Another good moment from the summer… Playing in the pool with Kate and looking over to see Canon sitting under an umbrella with Anne, blowing bubbles – everyone had smiles. That was a good moment.

And I guess this is where I struggle, it’s hard to have those idyllic moments with the whole family. Anne rarely contends with being anything other than the center of everything. And as much as I love her, my moments with her require enormous amounts of patience. She’s been especially rotten and demanding today. And I’m out of patience. It’s gone, and I’m spent.

She’s up in her bed, hollering for me…  “Mama!!!!! Mamaaaaaaaa!!!!!” I wish I could just sit here and watch the Olympics with my family and ignore her. But it’s hard. And I’m tired.

So that’s my moment. Tired mama, trying to ignore the cries of her little girl and longing to just sit and watch some Olympics. Where is God in moments like this? Right smack in the center – loving us and molding us into the people He wants us to be. In every moment, I have a choice… ignore God or acknowledge Him. Acknowledging Him- and His loving hand in every aspect of my life – lifts my eyes past my circumstances, past my tiredness and helps me to rest… even as I get up to see what in the world Anne is hollering about now ;-)

Life in the desert

I’ve been struggling lately.

Writing takes effort to connect with what God is doing in our lives. Sometimes, I don’t see His hand, and that is discouraging to me.

In an effort to find God, I started reading the book, A Praying Life, by Paul E. Miller. It’s been a while since a book has so deeply impacted me. This is mainly because Paul uses vignettes from his own family to illustrate his points, and he has a special needs daughter.

He’s put words to my longings. I now know I’m living in the desert. According to Miller, the desert is a place where there is a great divide between hope and reality. In my case, there is a great divide between my hope for Anne’s healing and the reality of Anne’s disability. And to add to the suffering, you have no idea how long you will be in the desert.

I’ve also learned that God can be close and intimate in the desert. I have experienced this. But typically, God remains on the edge, distant and elusive…  Paul Miller says God stays on the edge in order to increase your faith. I get that. God has definitely been on the edge of my life lately, and it has been difficult to persevere in pursuing God. In other words, my faith needs a lot of increasing ;-)

When God seems silent and our prayers go unanswered, the over-whelming temptation is to leave the story – to walk out of the desert and attempt to create a normal life. But when we persist in a spiritual vacuum, when we hang in there during ambiguity, we get to know God (Miller, pg 192).

When we suffer, we long for God to speak clearly, to tell us the end of the story and, most of all, to show himself. But if he showed himself fully and immediately, if he answered all the questions, we’d never grow… No one works like Him. He is such a lover of souls (Miller, pg 193-194).

I am tempted to leave the story every day. Because frankly, Jesus’ demands on my life are painful. So I am left with a choice, the same choice that Jesus gave his disciples in John 6…

…many of his disciples turned back and no longer walked with him. So Jesus said to the Twelve, “Do you want to go away as well?” Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God” (John 6:66-69).

Everyday, when I am tempted to live life apart from God, I echo the words of Peter… Lord, to whom shall I go? You have the words of eternal life, and I have believed, and I know that you are the Holy One of God.

But it doesn’t make the journey any easier…

Day 15 of Therasuit therapy

We are finished!!

I am very impressed with this program. Anne made significant progress in the three weeks. It really is amazing. She is VERY proud of herself.

Here are a few videos…

This is one of her walking with a cane. The therapist is moving the cane for Anne and lightly touching her left side. Anne is supporting all of  her weight – the therapist is only giving her cues to help her balance.

This second video is a sample of some of the exercises she performed. Her left foot is attached to a pully with weight on the end. She started this exercise on day one with .5lbs of weight. Her left leg was extremely weak, but it has gotten stronger… she is pulling 4lbs in this video! It’s the last day, so we celebrated by letting her eat potato chips… her favorite food :-)

What I’ve learned during Therasuit therapy…

Five things…

1. Anne CAN put forth effort. I’ve seen her grit her teeth and wrinkle her forehead as she strains to move her left arm. Seeing that effort has to be one of the most encouraging aspects of these last three weeks.

2. Anne has a fierce temper. Anne is soooo stubborn and gets angry when she feels unstable – which is most of the time. Today, while she was doing squats, she got especially mad and started to yell something ugly (which she knows she is not allowed to say). The therapist asked her to do 10 squats. Each time she would say the “forbidden” phrase, we would have to start back at 1. She got to 5 – and then she yelled it: “I’ll bite your butt!” So we started over. She got to 2 – and yelled again: “I’ll bite your bu-!” She thought if she left off the ending “t,” it wouldn’t count. But we started over. We got to 3 and Anne started to yell, and then thought better and said, “I’m MAD!” Victory. Anne exhibited reason and self control. Amen and Amen.

3. Anne has many obstacles to overcome. The greatest of which is fear. Anne has the physical ability to walk with the least amount of assistance. But she can’t overcome her feelings of  fear each time she feels the slightest bit off-balance. If Anne walks independently one day, it will come after years of “persevering -never-giving-up-hard-work.”

Which leads me to the fourth thing I’ve learned…

4. I can’t believe I’m writing this, but… I wouldn’t trade Anne’s broken body for her former healthy self – simply because of the character she will develop in overcoming her disabilities. Special needs children have amazingly strong spirits because of the amazingly large obstacles they have to overcome. Anne has put forth an inspiring effort over the last three weeks!

I confess that I’ve spent way too much time focusing on my “seen” circumstances instead of the “unseen” promises in God’s word. I’ve been overwhelmed thinking of how much work it will be for Anne and our family to continue her recovery. But just as I take pleasure in seeing Anne’s effort and perseverance so does God take pleasure in me – even in my weakest efforts. The key is leaning on Him for strength for the moment – and not worrying about where the strength for tomorrow will come from.

So the fifth thing I’ve learned…

5. Living in my own strength leads to exhaustion and burn-out. God has given me circumstances that force me to lean on Him. Even though I hate it, and get so angry… and stubborn…  and I feel like yelling, “I’ll bite your butt!” – I’m thankful that God would care enough for me to give me such an honorable task as to care for a special needs child. And for this, I am grateful :-)

Day 5 of Therasuit therapy

We’ve finished our first week. Anne has done amazingly well.

Specifically, she is less frightened and has more confidence; therefore, she is putting forth EFFORT! She turned to me several times today and asked, “How hard would you say I’m working? Just regular hard, or SUPER hard?” She is taking pride in her work ethic – this is something I haven’t seen before.

Here is a video taken while Anne is walking on the treadmill. There are no tears on day 5. She trusts that she will not fall, and she is having fun experimenting with the bungees. She is moving her right foot on her own. The therapist is just helping Anne with foot placement. Anne needs help with her left leg, but she is moving it much more than she did on Day 1. We are all proud of Anne (even Anne is proud of Anne – which is the best news yet!)

Day 1 of Therasuit therapy

Anne had her first Therasuit session today. (She will have 15, four hour sessions over the next three weeks.) It was intense. I think she cried for over half the time… not because she was in pain – just because she was MAD. This therapy is hard work, and Anne does not like to work hard. That’s actually one of her biggest obstacles. She puts forth little effort, and when therapists demand more, Anne gets mad.

My prayer is that one day she will channel that stubbornness into getting better. In the interim, we’ll just have to listen to her cry. It’s sooooooooo good for her!

Here’s a rough video of Anne walking on the treadmill. She walked a total of 15 minutes with two short breaks. You can hear her crying :-) Don’t worry, she’s not in pain. It’s just her way of complaining!

14 more days to go…