June 6, 2014 § 6 Comments
I have a special needs child. There. I said it.
Before our accident, I didn’t know any other family with a special needs child. I was blissfully ignorant of this hidden world in which I now find myself.
The first secret is that there are a ton of special needs children! Just visit any reputable pediatric therapy center, and it will be PACKED. There are so many families struggling in this secret world. It makes me realize how miraculous a healthy child is!
The second secret is that even though our government goes to extremes to make our country accessible to the disabled (and I’m grateful), accessibility is still a huge challenge for our family. For example, a simple trip to the pool is difficult for us. In my limited experience, pools are sometimes not wheelchair friendly, so I have to carry Anne into the pool area. Doing regular life is difficult – especially running errands. Lifting Anne and her wheelchair in and out of the van is part of my normal life routine. But I’ve found that I only have the energy for one outing a day with Anne. So grocery shopping, back to school shopping and general “running around” has to be spaced out.
The third secret is that even though there are tons of special needs families, it is still incredibly isolating to have a special needs child. The world goes by at lightning speed and leaves us in the dust. In many ways, this is painful – and if I’m not careful, I can lean a little towards self-pity. Seeing pictures of families enjoying vacations to the beach or amusement parks twinges a little. Watching families bustle about without the physical limitations of a disabled child makes me long for an easier life. It’s times like this that I cling to the fourth secret of having a special needs child…
The fourth secret is the best. I am still surprised at how much joy Anne brings our family and others. The time I get to spend with Anne is beautifully rewarding. She’s a treasure, and everyone who spends time with her comes away better for it.
Recently, someone asked Eric to describe his relationship with his children. He said, “My oldest thrives academically so I share my love of technology with him. My youngest is gifted athletically, so I share my love of running with her. My middle daughter (Anne) struggles with most everything, yet she teaches me the most about life.” Anne is our glue. I can’t imagine life with her any other way.
February 25, 2014 § 11 Comments
Lately I’ve been finding myself especially grateful for Anne’s words.
A friend of mine graciously stayed with our kids recently so Eric and I could go out to celebrate my birthday (yes, Happy Birthday to me :). When we got home, my friend said, “I had no idea Anne talked herself to sleep!” It’s true. I actually have never considered how strange this is!
Sometimes she talks to Kate; sometimes she talks to herself, but every night she giggles and sighs and in the quiet darkness, she is lulled to sleep by the sound of her own voice. It reminds me that her voice is a gift.
It was the first part of her brain to switch back “on” after the accident. She barely had the ability to move her right index finger, but she could talk. Her eyes were fixed, un-moving, but she could talk. Even now, her vocabulary, sentence structure, reasoning and conversation skills are her strength and she daily uses this gift to bless others.
Lately, Anne has been even more discouraged about her physical disability. She wants independence so badly. She also struggles with watching her independent family carry on their independent lives around her. She complains, “Why can’t I walk? I’m tired of this stupid brain injury. When will it go away, Mama? Why doesn’t anyone pay attention to me? Nobody loves me.”
I’m so grateful that Anne is able to communicate her deepest needs and longings to us. The beauty of Anne’s ability to utter words is that she is also able to absorb words. And she absorbs them deeply, so my answers to her, the words I speak to her, have power. So before I answer her, I pray. I need God’s words, not my words.
Anne. Listen to me. God has given you a gift. A very important gift. He has given you the gift of words. Everyday I watch you bring joy to others through your words. You will have to fight to overcome your brain injury for a very long time. But God uses your brain injury to bring joy to others. You are a treasure.
The word, “treasure,” was the word Anne needed to hear. She repeats it daily. “I am a treasure, mama. God thinks I’m treasure.”
Words. They are so important. Lately, I’ve been praying for God to show me how to use my words more effectively for Him. I recently shared Anne’s story with Kat Lee, the founder of the Inspired to Action podcast. If you’ve never heard me talk about the gory details of the accident, I share that story along with how God’s presence was so palpable both during and after the accident. I also talk about Anne’s gift of words and ways to help moms of special needs kids. It’s so easy for me to be careless with my words! But I pray that my words in this podcast reflect God’s goodness and faithfulness.
August 29, 2013 § 19 Comments
My friend, Josh, wrote a post on his blog that literally changed my life. His post: “An Open Letter to You from the Rest of World” is what inspired me to blog through the Bible in a year (and not quit in January)!
So now, he’s sponsoring a contest to encourage people to respond to his inspirational “Letter from the Rest of the World.” So I figured I’d give it a go… especially since I struggle daily with the tension between working to achieve my dreams and my home-bound responsibilities to care for Anne (my disabled daughter).
As I live in this constant tension, I’ve come to the realization that the best way to make an impact for good is not necessarily to write the next NY Times bestseller, but to surrender to the servant’s call of caring for Anne.
So here’s my response to “the rest of the world.” Let me know what you think!
It’s me…that skinny, freckle-faced girl with red hair and glasses. Yep… just me :)
Supposedly, I have something to offer you, but I feel much too small to offer your big-ole-self anything of significance…
You see, I spend my days taking care of my daughter who has a severe brain injury. What could I possibly offer you?
Every morning, as I walk into her room, she looks at me and asks, “Where are we going today, Mama?” And I say, “We are going to school,” but I think, “She wants me to show her the world.”
Then I carry her to the bathroom, and she sits and I sit, and we wait for her broken body to do what it has to do. And we wait, and she asks, “What are we doing today, Mama?” And I say, “Today’s a therapy day,” but I think, “We are going to persevere and never give up.”
And then I dress her and brush her teeth and put on her braces that straighten her crooked feet – so that she can stand. And as she stands, she stretches and lifts her one good hand to the sky – as if she might really touch it. And she looks up at me, and she smiles.
You might consider her lowly, broken and burdensome. But everyday I watch her bring light, beauty and grace to others.
Somehow she is able to fly in her brokenness. She not only flies, she soars, and she brings me along with her. She helps me laugh. She helps me love.
So this is what I offer to you, world…
Joy in the midst of hardship…
Rest in the midst of chaos,
And a Brokenness that breeds Strength.
I also offer you my disabled daughter, because she is priceless. I get to take care of her. And I am so grateful.
So if you happen to see us out and about, be sure to say, “Hi,” because my little girl gives the best hugs!
With Sincerity and Gratitude,
March 29, 2013 § 1 Comment
My sweet Anne.
She didn’t use her words. All she had to say was… “Please stop touching me.” But she stuck her pencil up the little girl’s nose instead. That poor sweet girl. Anne hurt her feelings – and then something remarkable happened.
Anne felt remorse.
She told me later, “I wish I hadn’t done it. I want to take it back. …And I want to give my brain injury back too.” Well, that last part wasn’t remorseful, but it was honest! …Sweet, precious Anne.
I’ve been struck by something powerful as I’ve been blogging through the bible… God always gives the sinner a chance to repent. And when true heart-repentance occurs, God is merciful.
Anne pleased God today. She was repentant. And that makes heaven rejoice!
In spite of her rash actions, it was a Good Friday for Anne. It has been for me too :)
Happy Good Friday, and Happy, Happy Easter!
February 24, 2013 § 6 Comments
I’m listening to the house… it’s quiet and I need to go to sleep. But I don’t want to, because something feels undone – unfinished… unsatisfied. I’m trying to write about Anne – but everything’s the same – she still has a brain injury.
When I pray for God to heal her – and I mean the “all-at-once” kind of healing… I know I’ve become desperate. God doesn’t work that way very often – because he cares more about our holiness than our happiness. There will be plenty of time for happiness in heaven – for now, it’s character building time.
But right now, in my unsettled, discontent heart… I just want to be happy. But the happiness is elusive.
When I feel this way – unsettled – like something’s unfinished, I know I’ve been grasping at distractions to fill the achiness. It’s a spiritual achiness - a longing… and silly entertaining distractions don’t cut it. I need the Savior. I need His touch. I need him to replace the discontent with contentment, the anxiety with peace.
I need to go to bed :) And pray, and wait, and hope that tomorrow will be better.
February 17, 2013 § 6 Comments
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…
- 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.
- 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!
January 28, 2013 § 8 Comments
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?
January 14, 2013 § 1 Comment
Today, as Kate and I picked up Anne from school, Kate listened to Anne’s teacher give a good report on Anne’s day. Kate said,
Great job, Anne!!! …even with your brain injury!” Kate was sincerely proud of Anne – but Anne responded as she always does – truthfully with no filters…
I hate that brain injury… That stupid brain injury. I just want it to go away!
Anne has not lost her sass! Her spunk made me laugh :) I feel the same way as Anne. And you know what… I think God agrees and can’t wait for us to see Anne made whole in heaven!
“What no eye has seen, nor ear heard,
nor the heart of man imagined,
what God has prepared for those who love him” (1 Corinthians 2:9).
January 4, 2013 § 7 Comments
Anne is doing something amazing! She is starting to crawl.
I sound like a first-time mom talking about her 7 month old :-)
Seriously, last summer, when Anne was in Therasuit therapy, one of the exercises they did with Anne was to get her on all fours on the treadmill and physically move her hands and knees in a crawling position. Not only could she TOTALLY NOT do that movement on her own, but she screamed the entire time, seriously, she screamed.
Now, she can transition from side sit up to all fours (or I should say three’s – because her left arm cannot straighten all the way to the floor) and she can move her knees… right, left and then she falls. But she’s doing it!
I’m continually amazed at the complexity of the brain and how just how much damage Anne sustained. A healthy brain controls the muscles necessary for crawling without the person even “thinking” about it. It’s taken Anne over two years of healing to regain the (limited) use of some of those muscles. But the healing is still happening. And it’s exciting :-)
June 22, 2012 § 4 Comments
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 :-)