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 ;)
What a blessed year 2013 was – not because of anything wonderful or terrible – just because of God’s grace to our family.
Everyone seems to have grown so much in the last year.
- Eric’s faithfulness in prayer has increased. He’s been amazed at God’s consistent work through his humble prayers.
- I finished my goal of blogging through the Bible. I still can’t believe I was able to write 365 straight posts. You can read what I learned from the endeavor here.
- Canon (11) just grew. Man, he’s big.
- Anne (9) has shown immense improvement – both physically and mentally. Her seizures are under control, she can walk with a walker and she is able to focus for longer periods of time.
- Kate (7) has grown up in every way. She’s responsible and kind-hearted. I’m so thankful for God’s work in Kate this year.
God is always faithful to work in all of us! We are most thankful for 2013 and look forward to God’s adventures for 2014!
Anne begins her 2nd round of TheraSuit Therapy today. So far, so good :)
Update and Prayer needs:
We finally have her seizures under control. She is on a different medication which seems to have very few side effects. At her current dosage, we rarely see seizures – and even when we do, they are extremely mild.
The only side effects from her seizure medication seem to be occasional intolerance for movement and increased emotional outbursts… NOT a good mix for TheraSuit therapy!
Please pray that somehow, these side effects are minimal and she would be able to grit her teeth through the discomfort and actually enjoy the process. Right now she’s screaming, but she’s working through it. We covet your prayers :)
Okay… Here goes :-) Can I just say that I’m SO thankful for special ed. services in this county???!!!! Anne’s teachers, case managers, therapists, assistants…. are all amazing and want what is best for Anne. Anne receives absolute top-notch services in a wonderfully nurturing environment. We are so thankful for Anne’s school and the people who work there.
My meeting at Anne’s school went GREAT! Her teacher had nothing but positive things to say about Anne… “She’s no more disruptive than some of the 5 year old boys we have in class.” Everyone seems to have compassion for Anne, and they all genuinely want to help her. All of their recommendations were spot-on. I could not be more pleased.
Academically she’s right on track with her class – and maybe just a little bit ahead in Language Arts. The fact that she has her short-term memory and can learn/retain new information is a miracle. She is loving school – just loving it.
On a different note, Anne is having seizures again – very different than the ones from last winter. Please pray that we would find the right combination of medication(s) to help control the seizures. THANK YOU for all your prayers. I think this is the beginning of a fantastic school year for Anne!!!
Anne’s new seizure medication seems to be helping her seizures. She hasn’t had a seizure in over a week! But the medication is making her tired – like she’s in a haze. Her eyes are droopy and she wants to be in her bed all the time. The side effects could go away as Anne’s body adjusts to the medication, but if not, we’ll be looking for another seizure med. It’s just too discouraging to see her so droopy all the time…
She still stutters, but I noticed a significant drop over the weekend when she was able to get more rest. Her speech therapist thinks we should take the “wait and see” approach. Typically stuttering in children takes care of itself without any therapeutic intervention. I’m praying that’s the case for Anne!
We’re so grateful for your prayers. It’s a constant source of encouragement for our whole family!
Anne is still having seizures. She actually had a video EEG a few weeks ago. She had a seizure during that time, which was great from a diagnostic perspective. She is having mild clonic-atonic seizures which originate from her left temporal lobe and both frontal lobes. They are considered mild because she remains conscious and lucid throughout the seizure. She is on her 2nd medication. The first did nothing but make her tired – it had no affect on her seizures. Most of the time, her seizures are mild and don’t last very long – but every now and then, she’ll have an intense one that lasts too long for comfort.
On a different front, Anne has started stuttering. It gets worse as she gets tired. We’re hoping this is just one of those “one step backwards” before she takes a few steps forward :-)
So please pray:
- that we find the best medication to prevent the seizures from doing additional damage to her brain, and
- that her stuttering would disappear.
Thank you! -kathryn
Here is an update from our neurology appointment this morning… The doctor walked into the examination room and began to ask questions about Anne’s history – and after about 5-10 minutes of his thorough questioning, Anne began to have one of her “episodes.”
The doctor said, “well look at that, she’s having a seizure.” It was one of her longest yet – 3 to 4 minutes – and the doctor took thorough notes through it all. He said it looked like a left-sided partial seizure. He prescribed medication, scheduled an EEG, and now we’ll add neurologist to the long list of doctors that we see regularly :-)
Anne’s seizures have been very inconsistent, so the fact that she had one WHILE THE DOCTOR WAS IN THE ROOM – was a miracle – and a direct answer to many prayers.
The good news is that they appear to involve a small area of Anne’s brain, are relatively mild and were diagnosed early enough to prevent future damage – at least we pray that is the case!
Thank you for your prayers!!! -kathryn
I just got home from our church’s Christmas program rehearsal. Three of us are particpating in it, so it was a busy night!
Tonight’s rehearsal crystalized some thoughts for me – as I’ve been wrestling with why I’m struggling with Christmas this year. I didn’t want to put up the tree, but I did it- for the kids’ sake. I didn’t want to deal with presents or wrapping paper. I don’t like seeing all the lights. It’s all so painful – b/c it’s all tainted with grief.
I think for the first time in my life, I find myself wanting to push past all of this christmas-y stuff – and find Jesus. I have this image in my mind of unwrapping this huge box that is covered with commercial christmas paraphernalia. And the box is really hard to unwrap and open – layers and layers and layers of paper and packing tape and packing material – to finally uncover the tiny Christ child – hiding in the bottom of the box.
Thinking of the Holy Night of Christmas requires discipline to be still – but thankfully, it is where I’ve found comfort this Christmas season…
And I’ve needed comfort… I am taking Anne to the neurologist tomorrow morning b/c we think she might be having seizures. We’ve been calling them “episodes.” She’ll zone out and jerk her body slowly. They last anywhere from 30 seconds to 2 or 3 minutes and they are SO difficult to watch. It’s just a painful reminder that my sweet little girl has a serious brain injury.
Will you pray for us tomorrow morning?
- that the neurologist will have wisdom to properly diagnose Anne, and
- that I wouldn’t get so anxious when these episodes do happen, and finally,
- that they would DISAPPEAR :-)
Trying to find Jesus at the bottom of the box… -kathryn