A peek inside the secret life

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.

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The Power of Words

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.

Questioning, Doubting and Honesty before the Throne

I’m halfway through with my year of blogging through the bible. I’m currently in Ezekiel, and I feel WAY over my head, but somehow God manages to give me something to write about every day. I’m really experiencing God’s strength through my weakness!

Something stood out to me yesterday as I was reading Ezekiel 8-11… These are the chapters describing Ezekiel’s first temple vision. At the end of this vision, God’s glory departs from the temple because of the enormous sin of the people.

In the middle of the vision, God sends angels out to execute judgment on all but the “remnant.” The judgment was so gruesome that it caused Ezekiel to cry out…

And while they were striking, and I was left alone, I fell upon my face, and cried, “Ah, Lord God! Will you destroy all the remnant of Israel in the outpouring of your wrath on Jerusalem?” (Ezekiel 9:8)

In the face of such wrath, could Ezekiel be doubting God’s goodness? I don’t know for sure… But I do resonate with the idea of questioning God’s goodness…

Sometimes we are surrounded by such dire circumstances, that we wonder how God could allow such suffering.

I’m familiar with all the theological answers to this age-old question. I get that suffering is a result of sin and that God uses suffering to bring about repentance, faith and sanctification. If you’ve read my blog, you know that I get that. I really do.

But sometimes, like Ezekiel, we are so overwhelmed that we cry out, “Enough is enough!” And whether or not this is an appropriate response or not… it still encourages me that Ezekiel had the guts to be honest. God is big enough to handle our honesty… it’s whether we are brave enough to be honest and vulnerable before God. I believe He meets us there. And I believe He loves us there…

A longing

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.

High Five!

Anne’s been struggling lately with feeling… in her words, “useless.”

She sees her brother and sister work together to clean up after dinner and she says, “I’m not a help. I’m useless.”

She compares herself to her peers and says, “I’m not good at anything. I’m useless.”

As you can imagine, Eric and I immediately tell her otherwise and we list all the ways she’s valuable. And we’ve noticed a trend. Her worth is in bringing others joy. She’s good at encouraging others, connecting with others, making others laugh.

A great example happened in church this morning… For the first time since the accident, Anne was able to participate in children’s choir. The children helped lead worship this morning, and after they finished singing their few songs, Anne (who was especially proud of herself) reached her hand out to her teacher and said loudly (so that everyone in the congregation could hear), “High Five!”

Do you know how many people commented to me about Anne’s “High Five” after church? Well… several. She’s a delight to others. And if you have a chance to tell her yourself – be sure to encourage her that she is not useless. She is a joy! At least we think so :)

Photo courtesy of Bobbi Jo Brooks Photography

Photo courtesy of Bobbi Jo Brooks Photography

In the middle

Mommy, why did God let that stupid car crash happen? How could God really love me?

How do you answer your little girl when she asks these types of questions? Complicating matters is the fact that Kate, who is now 6 years old, is beginning to ask the same questions. Kate was only 3 when it all happened. I’ve spent much time praying for direction on how to lead such a young child through the grief of losing her sister. Kate is finally able to process it all.

The other night as I was putting the girls to bed, Kate was saying her prayers. Kate always prays for Anne. She asks God to help Anne get “all better,” for Anne to walk again, for God to heal her left arm, for Anne to dance and run again. Every night it’s the same, except this time, Kate stopped and asked, “If Anne does walk again, will Anne’s head be better too?” In other words, if Anne gets better physically, will she get better mentally? Kate was essentially asking, “Will Anne ever be ‘normal’ again?”.

How do you answer your little girl when she asks these types of questions?

I tell both girls the truth. “I don’t know.” And then I tell them about the idea of story.

“Kate, think about the story of Cinderella, and how hard her life was. Her evil step mother made her work like a slave. Cinderella didn’t know the end of the story. She didn’t know that she would marry the prince and live happily ever-after. When you are living in the middle of a story, you don’t know the end, and that is hard.

But, who is writing Anne’s story? God is writing Anne’s story, and he knows the end. God’s word assures us that the end is a good one, a ‘happily ever after’ one, but while we are living in the middle of this story, it is hard. We just have to trust that God has a good plan for Anne, and a good plan for you, and then we do the best we can while we wait for the end of the story.”

Anne and Kate’s beds are very close to each other. There is barely enough room for me to kneel down between them. But when I squeeze in to kneel beside one bed, I can reach behind and touch the other. As I was kneeling with Kate, telling her how God is weaving Anne’s story, I was rubbing Anne’s back with my other hand. And Anne was still. She was listening… taking in the truth that God is writing her story, and that her story is good.

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…

Moment by moment

I have friends who have had to leave their homes due to the fires in Colorado. This picture was taken over Garden of the Gods in Colorado Springs. God’s promises endure …even in the fire.  What a poignant picture of life outside the garden.

From Jesus Calling, June 27

Rest with me awhile. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded with uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. Trust that I will equip you fully for whatever awaits you on your journey.

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 :-)