Time is Different with Disability

This morning was Anne’s first day of summer. She woke at 7:30. I gave her a bath. She loves baths! After dressing, taking her medicine, and eating breakfast, it was almost 9:00 am. Time. It slips away like water. Everything takes longer with disability.

After breakfast, Anne watched the Wiggles while I finished report cards (summer break for teachers is a myth). Then we read a book together.

For the last seven years, my prayers for Anne have been for her to walk and read. God answers prayer. Sometimes he answers quickly and dramatically. Other times, his answer is a slow work – shifting subtlety over time – molding character through patience and perseverance. It is true that Anne can walk and read better than she could seven years ago. This is something to be celebrated. She read the whole Little Bear story, all eleven pages. She read three lines completely independently. I’ve never seen her do that before. She was highly distractable but she had a great attitude as I redirected her attention back to the story. She read with comprehension – often re-reading lines with more emotion to emphasize the meaning.

It took approximately 45 minutes to read the entire story. We were interrupted by a telemarketing call. After I hung up, Anne said, “That was awkward.” We laughed so hard together. The left side of her mouth used to droop when she smiled. Now her smile is almost even – and it’s perfect when she laughs. I love her laugh.

Anne’s almost-even smile

We finished the story at 10:30 am. Time. It slips like water. But it’s summer, and there is time to give. Anne is my treasure – a gift to be savored!

Walking on…

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.

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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…

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Thank you, Sarah Figaretti, who played with Anne so I might have the time to write this post!

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Some of Anne’s more recent adventures…

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The End of Summer

It’s hard to believe Anne goes back to school tomorrow. Part of me is sad that I won’t have as much time with her. But Anne thrives in the school setting. She’s excited, and I’m happy for her :)

Anne had a fantastic week at Camp TBI… For one week, she gets to be a regular kid going to camp. What a gift!!

Just before Anne climbed the rockwall!!

Anne with her counselor, Haley

Anne telling jokes at the talent show!

A Daughter’s love and A Daddy’s heart

We dropped Anne off at overnight camp yesterday. It’s an amazing camp for kids with TBI. They provide a one-to-one counselor to camper ratio so that kids with disabilities can experience the independence and fun of a typical camp. Anne loves it.

As much as we cherish a break from caring for her, we miss her person while she’s gone. Kate struggled to go to sleep last night without her sister, “She talks me to sleep, Momma. I miss Anne.” So we send Anne letters and pray for God’s protection.

Eric wrote Anne the most beautiful letter. Here’s an excerpt…

Little Anne,

…God has always taken care of you and he always will. He took care of you when you were in the hospital and could not speak or move, and He is with you now. God healed you because He has giant-sized plans for you. We are so thankful that you can talk to us and bless us with your kindness, love and even your wit.

Anne, you are such a blessing to our family because you love us so unconditionally. You are quick to forgive, have a short memory for wrongs, never hold grudges, and are quick to show us love. God gave you a special joy in your heart, and it is infectious. Keep sharing that joy you feel with others….

Love,
Dad

Eric beautifully summarized what I have been feeling all summer. Even though it is physically difficult to care for Anne – and will only get harder as we both get older – to be loved by Anne is other-worldly. It’s a taste of heaven – a holy encounter. Her love is lavish and unfiltered, uninhibited and free. The sheer weight of her love is staggering. Words can’t describe it.

I thank God for every squeal of delight and unsolicited, “I love you, Momma.” This is God’s special gift for me and Eric. God supplies our every need in this difficult but joy-filled journey. Thank you, Jesus, for our little Anne :)

Photo courtesy of Bobbi Jo Brooks Photography

Summer fun and Summer challenges

This morning marks the first time ever (for our “new Anne”) that she has gotten out of her bed all by herself! She was bored and impatient waiting for me to come up to get her – so she got out of bed, scooted herself over to her bookshelf and started to play. This is what I found when I came upstairs this morning!

I was THRILLED! This mess represents desire, determination, motor planning, independent thinking, and courage with a bit of mischievousness. These are new qualities that we are seeing in Anne this summer. She seems to be restless – like her brain is craving new challenges and stimuli. This is a good sign of growth and progress – but it is also challenging for the whole family! We feel like we’re cleaning up after Anne ALL. THE. TIME.

Fifteen minutes later, Anne’s room looked like this:

I’m happy to clean up after Anne if it means she’s making progress… But she does keep us busy!

Next week, Anne begins three weeks of intensive TheraSuit therapy. This could not come at a better time as she is ready to be challenged! If you think of us, please pray for energy for both me and Anne as we tackle the taxing schedule of intensive therapy. Thank you for your support and prayers and for sharing in the joy of Anne’s long-term recovery!

Camp TBI Update

Anne has done GREAT at overnight camp! She’s participated in swimming, archery, canoeing, crafts, music, games and even singing and dancing on stage!!

We are picking her up tomorrow morning, and she starts school on Monday. We have officially survived the summer! Anne has done so well, and we look forward to what God has in store for Anne this school year. Thank you for your prayers and support and love for Anne and the rest of us Jacksons :)

Overnight Camp for Anne

We dropped Anne off at Camp TBI this afternoon. I can’t believe I actually left my precious Anne at camp. One part of me is desperately sad, and the other part of me is beyond excited.

She’s in a cabin with four other girls and their counselors. She’ll get to do activities like horseback riding, swimming, biking, arts & crafts, music – just normal camp stuff – but all made accessible to kids with disabilities. It’s a fantastic facility. I think Anne will have a great week!!

Please pray for Anne to have FUN and to not miss us too much. I don’t want her to be sad. I just want her to make new friends, feel loved and have fun. Thank you!

Bye Anne! We’ll see you on Friday!!!

A special-needs summer

One month ago, I spent an evening with a few close friends from church. It was a refreshing time of food, laughter and good conversation. We ended the evening in prayer for one another and it hit me in that moment that I was very-much-anxious about the summer. I confessed my anxiety in prayer and my sweet friends comforted me with their presence while I had a good cry!

Why does summer create such anxiety in me? One very wise woman commented on my blog recently,

People who don’t have a special needs child have no idea what “summers” look like. It’s not sleeping in late, lounging around eating meals whenever, etc.but it is constant stress of always making every opportunity a learning experience. Yikes this is hard and some days almost impossible to accomplish.

She nailed it. So what I’ve tried to do is walk the fine line between spending every moment working with Anne and letting Anne watch videos all day! I think the key to this balance is to give the burden to Jesus – let him carry my stress and let him give me the endurance to teach Anne.

It’s a daily battle, but I think it’s going well so far. Each week has presented a little different schedule and/or challenge providing us with the variety I need to endure. I’ve also lifted the burden by having a few people come to work/play with Anne each week.

Another highlight of our summer is that I’ve scheduled two camps for Anne which provide respite for me! Her first camp is this week, and her second camp is at the end of the summer. I’m so thankful for organizations like FOCUS and the Walton Foundation for providing accessible camps for kids like my Anne!

But I think the best thing about this summer is that Anne is thriving! Her seizures and irritability have diminished resulting in her being delightful and fun. I love my time with Anne! We are working on potty training and reading. She is doing well on both goals – staying dry and reading longer sentences.

This past week, I met the same friends who comforted me in my anxiety a month ago. Their first question was, “How’s the summer going?” It was such a relief that I was able to say, “Great!” God has supplied our every need. He always does. I don’t know why I ever worry ;)

Preparing for school

Our summer is winding down. Anne goes back to school next Wednesday (8/7)!

Anne responded so well to serial casting that she only had to have three weeks of casts instead of six, so she will be able to go to school cast-free (serial casting is a technique that increases the range of motion in Anne’s ankle).

This is the first summer that Anne seems brighter and sharper at the end compared to the beginning. Her amazing use of language keeps us in stitches. She uses her words in such a clever and witty way.

The other day, Kate was working through a book of riddles, and Anne was able to figure out riddles which stumped Kate. Anne has excellent reasoning ability. She’s still so smart.

Her challenges are her short attention span, impulsivity and cortical visual impairment (CVI). (CVI is a broad term for visual impairment caused by a problem with the brain, rather than with the eyes.) These are all huge obstacles which Anne must overcome in order to read.

Fluent Reading and Fluid Walking. These are our two dream goals for Anne. These goals are so long-term, I feel like there are a hundred short-term goals to be met to get there. But we’ll keep plugging along… little step by little step.

God continues to supply exactly what we need precisely when we need it. Never less, and never more. We pray for the faith to trust him in the moment and leave the future in his hands. In the meantime, God uses Anne to give us so much joy! We are so grateful for the gift of her life!!

Anne’s summer

I think this has been Anne’s best summer yet. Anne makes good progress when she’s consistently challenged, and we’ve worked hard to make sure she has lots of challenges…

TheraSuit therapy + Church camp in June. Serial casting + reading tutoring in July. And when you add in trips to the pool and Six Flags – well, we’ve been busy.

I confess, I don’t typically have the energy for this type of schedule… I’m a read-a-book-at-home kinda gal. But I think God has given me an extra boost. That said, I’m thankful we only have three weeks left before Anne starts school :)

But she’s doing well. And so are the rest of us.

Oh! And Eric’s company generously decided to cover Anne’s TheraSuit therapy – but they said this would be the last year, so we’ll have to pray about what to do next year… But for this year, she’s covered!!! Thanks for your prayers and encouragement… they are sustaining us!

Crayons In My Water

An Unpredictable Special Needs Blog

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