August 23, 2016 § 7 Comments
Let me be real for a moment…I’m struggling to trust. I’m struggling to look past the visual evidence. All I see are Anne’s weak knees. Her body is outgrowing the strength of her muscles. She struggles to straighten her legs when she walks. It makes me sad.
I’m also worried about the future – specifically where Anne will go to middle school. She just entered the 5th grade at the same school she’s attended since the accident. Next year brings major change – which makes me anxious.
Sadness, anxiety, worry. These are not the emotions of faith. I find myself crying out to God for help to trust.
This morning, God led me to this passage:
Therefore, strengthen your feeble arms and weak knees. “Make level paths for your feet,” so that the lame may not be disabled, but rather healed. Hebrews 12:12
Stumbling across this verse reminds me that God knows my anxious thoughts. He is not far off. Anne’s healing may not come until heaven, but it will come. Eric and I will continue to pray for God to strengthen Anne’s weak knees and level her path to middle school. He is faithful when I am faithless. Thank God.
May 27, 2016 § 3 Comments
Summer…oh Jesus. I need help during the summers!
I’m not wired to play Candy Land and Chutes and Ladders with Anne for HOURS upon HOURS. Lord, help me!
This is my prayer of desperation! God hears ALL prayers. He’s sent me so much help for this summer. The help comes in a variety of shapes and sizes – but it’s help. Anne has camps, siblings, paid helpers, intensive therapy, the beach and the pool. We’re on Day 2 of 65. It’s all good.
After transitioning from part-time to a full-time teaching position this January…I’m tired. So tired of school – that I’m actually looking forward to summer. My two days with Anne have been such a welcome change of pace. She continues to grow, change and recover. She’s doing so well.
Unbelievably, Anne turns twelve this fall. Her hormones are making her moods swing more wildly – her bursts of anger and frustration are more intense. I need wisdom to navigate how to appropriately discipline a hormonal, almost-12 year old tween with a brain injury! God has a sense of humor.
In all circumstances, God leads Eric and me to lean more deeply into Him – looking to God for strength, energy, wisdom, guidance and faith. As the pastor preached last Sunday, “Don’t give up. We’re not home yet!” By His grace, we continue down this road – the road God has planned for our family. Whether good or bad, easy or hard – it is God’s plan – so we walk on…
Thank you, Sarah Figaretti, who played with Anne so I might have the time to write this post!
Some of Anne’s more recent adventures…
April 13, 2016 § 5 Comments
On this day, six years ago, Anne survived. She has now lived more years with a Traumatic Brain Injury than without. It still hurts to think that my beautiful daughter will live the rest of her life battling disability.
But life goes on ;) We, like most every family, battle the mundane. There’s still laundry and lunches to prepare. Meal planning and carpooling. Now that I am teaching, I have additional grading and lesson planning responsibilities. We also have “special” mundane tasks…like today, on my day off, I made a visit to the chiropractor because carrying Anne down the stairs ain’t no joke! I also just completed a seizure action plan for Anne to attend overnight camp this summer. Ordinary tasks for an ordinary day.
But it’s not an ordinary day! I now share this painful anniversary with a friend whose mother passed away this morning. I will reach out to her on April 13th for years to come…just as friends have reached out to me. I just received this text, “Love you today, sweet friend! Grateful for all God has done.”
Grateful. This is the right word. For even though we still experience sadness when we look into Anne’s forever-different eyes, most of all, we feel gratitude. I believe her unconditional love is the closest to God’s love I’ll see this side of heaven. We are grateful for our Anne!
To celebrate Anne’s life on this day…we are sharing a video our oldest son, Canon, created as part of a scholarship application. We love you, Anne!!!
February 6, 2016 § 3 Comments
Friday afternoon, after an unusually hard week at work, I pulled into Anne’s school. Thankfully, the handicap spot was open so I parked easily and went inside to pick up Anne from the after school program. As soon as I walked into the lobby, the ASP worker called on her walkie-talkie, “Anne Jackson, Mr. J., we need Annnnnne Jackson.” Anne loves hearing her name on the walkie talkie. I heard her jabbering with Mr. J. as he pushed her forward toward me and Kate. As soon as Anne saw us, she blurted out the same questions she asks everyday, “I’m hungry!! Do you have anything for me to eat in the van?” I usually respond, “Anne, we’ll eat when we get home,” but I was tired, and it was Friday, so I answered,”We’re going to a restaurant! Daddy is meeting us there!” Anne was so excited she tried to stand up out of her wheelchair but was pulled down by her seat belt. “Really?? Kate!!! We’re going to a restaurant. Are we going to go IN? Really, we’re going to go IN!!!”
We don’t go to restaurants very often. As excited as Anne gets about going to a restaurant, once she gets there, she becomes highly frustrated. Friday’s trip was no different.
We walked into the casual Mexican restaurant and I was relieved that we had arrived before the Friday night crowds. Practically empty, we seated ourselves next to the fountain – a novel distraction for Anne. As Kate searched for pennies in my purse, I asked the waitress if she could immediately put in an order of chicken fingers. Motioning to Anne I said, “She gets very impatient waiting for her food. Could you bring it as soon as possible?” With kind and understanding eyes, the waitress walked to the kitchen and then returned to get our drink order. Meanwhile, Kate was helping Anne throw pennies into the fountain. Again, thankful for the empty restaurant, I watched Anne hurl pennies across the room. Patiently, Kate would retrieve them while Anne laughed.
Before the waitress returned with our drinks, Anne lost interest in the fountain and began her impatient screams for food. “Where is my food?! I HATE this restaurant!! Why don’t they bring me my food??!!!!!” This is the reason why we rarely go to restaurants. Eric was running a little late and I was grateful he was missing Anne’s predictable tantrums. Canon and I took turns trying to reason with Anne, “Anne, your food is coming soon. Just a little bit more time. Be patient, Anne. You’re getting your food first.”
The waitress returned with our drinks and placed a large glass in front of Anne. Anne immediately grabbed for the glass and spilling water on her pants, she screamed again, “It’s cold!! I HATE this restaurant. When is my food coming?!!” The waitress met my eyes and responded, “I’ll get a cup with a lid.” Relieved, I started cleaning Anne up.
The waitress brought Anne a new drink (and extra napkins) and finally began to take the rest of our orders. In Anne’s typical playful way, she reached into the waitress’s pockets retrieving her phone and playing with her pens. Amazingly patient, the waitress tolerated Anne’s social miscues, looked into her eyes, and said, “I think your food is almost ready.” Anne had made a new friend! She responded enthusiastically, “Ranch dressing! Would you please bring me ranch dressing with my chicken fingers?”
A few minutes later, the waitress (who was now a super hero in Anne’s eyes) placed the plate of chicken fingers in front of Anne with a huge bowl of ranch dressing. Heaven. Anne was in heaven. And the whole table breathed a sigh of relief. We had made it. Anne had her food, and all was well. Just then, Eric arrived. Seeing Anne’s plate of food, he smiled with understanding, “Perfect timing.”
After Anne was happily full and we had all finished our meals, the waitress brought the check. She smiled at Anne who was giggling and playing with Canon. I turned to Eric, “Leave her a large tip.” Without hesitation, he responded, “Yes ma’am.” And we left, feeling triumphant that we had survived (a typical activity for most families) – eating out with our sweet and sassy Anne ;)
January 31, 2016 § 2 Comments
Today’s sermon at church was on marriage. It was so good! Before Anne’s accident, Eric and I sailed through marriage relatively easily…after the accident, however, marriage has been tough. If not for the powerful work of God in our hearts, I don’t know that we would have made it. But 5+ years later, I’m humbled and thankful for God’s gracious restorative work in our marriage. We laugh together again. That’s huge!
A few years ago, I wrote a guest post about marriage on a friend’s blog. I’m re-posting it today to celebrate God’s work in our individual lives to grieve, forgive, sacrifice and re-connect after Anne’s tragedy. Hope you enjoy it :)
What Makes Marriage So Hard?
Originally posted on Renee-Robinson.com on July 22, 2014
I’m sitting on a balcony, listening to waves crash against the sand, and I breathe in gratefulness. My husband of 17 years is beside me. We left one kid at camp and the other two with grandparents. Alone. We are finally alone at the beach.
17 years ago we were naive best friends starting a new life together. Life was simple. Now we are battle-worn best friends struggling to raise our little family. We’re weary, but we’re together.
Marriage. Who knew it could be so hard?
It got harder when our daughter was almost killed in a car accident. And marriage remains hard as we deal with the strain of caring for a daughter with a traumatic brain injury.
But yesterday, I almost ruined this trip. This trip that we’ve been looking forward to for months. This trip that took three spreadsheets to outline the caretaking schedule for our disabled daughter. We so need this trip.
What did I almost do? I almost let my anger force me to start a fight with my husband that would have taken days to recover from. But thankfully, God intervened.
It all started when my husband made a simple comment at lunch in which he defended an old family friend. I’m ashamed to say that I struggle to show kindness to this person. In many ways, I’m jealous of her seemingly easier life. My husband’s words picked at a sinful scab in my heart. Jealousy, covetousness, ungraciousness. Those are my ugly sins.
Instead of shining the light on my dark heart, I turned my critical spotlight on my husband. It’s easy to make up lies in your head when you don’t want to face your own sin. “How could he defend her?” I thought. “He should defend me! He just doesn’t understand how hard my life is compared to hers.” Ugly. My heart can be so ugly.
I retreated to my room and felt the anger well up through my stomach past my hard heart and clench its fists around my throat. I had turned fiercely angry.
“Oh God,” I prayed. “Please don’t let me ruin this trip. Please don’t let me lash out and hurt my husband. Please make the anger GO AWAY.” I tried to carry on as if nothing was wrong, but the anger only intensified and threatened to come out in a wave of poisoned words.
I retreated again. “Oh God. Please, please, please take this anger away. Please God. Please.” And I crumpled helpless to my knees and waited. And the change began.
God graciously, with such tenderness and compassion, opened my eyes to my jealous heart. The problem was me. Not my husband.
God’s tender conviction led me to my deep need for grace. “Oh God – please change me. Help me to be gracious toward this woman whom I envy. Give me your love for her. She’s just a mom – trying her best – just like me.”
Just like me. She’s just like me. A mom, struggling with sin – but trying her best – just like me.
And waves of forgiveness washed my anger away. I was free. His Grace had filled the crevices that just minutes ago were simmering with anger.
My husband came to me later, embracing me and whispering how he was sorry for being insensitive. God had worked in him too – separately – apart from me. God didn’t need me to change him. God is big enough for the both of us.
God saved our trip. Just as He’s saved our marriage over and over again as we fight to stay connected since our daughter’s accident.
He works in us in spite of our tragedy, in spite of our weariness. He makes us more humble, more dependent, more in love with Himself and with each other.
Who knew marriage could be so hard? And painful? And beautiful.
January 6, 2016 § 8 Comments
It’s been a while since I’ve written specifically about Anne and her recovery. Frankly, it’s because writing requires thinking and thinking about Anne’s recovery is painful.
Don’t get me wrong…our lives with Anne are filled with joy. She’s a precious jewel, and we are so thankful for her. But the joy doesn’t alleviate the pain. Rather, the joy and pain mingle together – coexisting in this relentless “life after brain injury.”
Sometimes it’s hard for me to see the oh-so-slow changes in Anne, but they’re there! She’s getting stronger. As her muscles get stronger, they also have to re-learn how to move with other muscles in order to do the simplest task – such as standing up from a sitting position. Anne still can’t do this consistently. One day she will!
I think the biggest change has been because of a drug we started giving Anne in August. It’s not really a drug. It’s labeled a “medical food.” Vayarin‘s website calls it: “an innovative non-drug clinical dietary therapy for managing ADHD symptoms.” Anne did not have ADHD before the accident – it’s just one of the many effects of her extensive brain damage. She is unable to take traditional ADHD medication, so we’re trying the nutritional “medical food” route…
We’ve definitely seen a positive change in Anne over the last few months. She still has an extremely poor attention span and impulse control, but interestingly, her awareness of time has increased. Let me explain.
One of the effects of Anne’s brain injury was that she constantly lived in the present. For Anne, the future was too abstract to grasp and everything that happened in the “past” she thought happened “yesterday.” But now, Anne has a broader awareness of both the future and the past. She can describe with detail everything that happened earlier in the day and understands that some things happened that morning and other things happened the day before. She is also aware that she isn’t stuck in her present – and she can plan to change her present situation. For example, if she is in the living room by herself and doesn’t like it…instead of thinking, “I don’t like this, and I’m very upset,” she can think, “I don’t like this and how can I change this? I can get down off of my chair and scoot around the house on my bottom and go find my mom.” Which is exactly what she does!
This is all very wonderful but awareness of the future also has its downfalls… Now Anne is asking hard questions like, “Mom, I thought this brain injury would be ok, but it’s not. When will it get better?” And…”I pray for God to let me walk again. Why doesn’t God hear my prayers?” In other words, she’s starting to wrestle with a future which is unknown – and forced to trust a God she can’t see. Seeing Anne wrestle with her faith is both heart-wrenching and heart-warming. Much like the mixture of joy and pain I experience every time I look at her. Joy for what she is…Pain for what she’ll never become.
God, I pray for you to reveal yourself to Anne in a way that is unique and meaningful to her. I pray for your comfort for her when she is discouraged and your grace for her when she is angry with you. Please God, use Anne to bring joy to others – redeem her pain and suffering with a divine purpose. Give her joy. Amen.
January 2, 2016 § 4 Comments
Anne finished Intensive TheraSuit therapy this week…fifteen sessions spread out over four weeks. She worked on strengthening her left side….
and in the process, gained confidence to aid her in balance and walking.
Anne LOVED the therapy saying, “I’m sad it’s over, Mamma.”
In some ways, I am too. The past two months I’ve been hyper-focused – first on planning for suit therapy (lots of logistics involved in caring for Canon and Kate while I’m in therapy with Anne) – and second on pushing through the crazy schedule.
We’ve had lots of help…co-workers provided meals, family and friends provided rides for Canon and Kate…we were even blessed with anonymous Christmas gifts for our entire family! God has provided through the love and care of His people.
But now that the hustle is over, I find myself looking forward…there are no intense schedules to coordinate or complicated logistic puzzles to solve. Only the normal grind of everyday life.
I wonder what extraordinary things God will do in the midst of my ordinary schedule? He loves to surprise me with unexpected gifts – sweet joys in the middle of gray, winter days. In the middle of the mundane, I will watch for His blessings :)
We wait in hope for the Lord,
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
Psalm 33: 20-21