Tag: epilepsy

Once again…

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Once again, I’ve not posted in a while. A really long while.

There are a lot of reasons for that. Work. School. Life. And Harper has done really well through all of the busyness of everything, so I’ve been holding on to that and feeling “normal” again.

It’s funny to me the “normal” things that we once took for granted are now big steps. We’ve made it a couple of months with just her regular therapies and no doctor’s visits. She had a good report card without an extensive amount of extra work or tutoring. She’s participated in school parties, festivals, and musicals. I was able to stop using a checklist to help her remember how to get ready in the morning or at bedtime. She even started sleeping in her own bed in our room instead of beside me in my bed! I began to rest easier at night, to not analyze her every move, to loosen the reigns a bit and let her be a kid. It was good.

Things were going so well that I reached out to her doctor in Baltimore to ask about postponing her next appointment in January. She agreed.

And the very next day the seizures came back.

I’m not going to lie- I’m kind of mad about it. Actually, I’m really mad about it. Just like that I’m back to watching her every move. I listen for the rhythm of her breathing to change in her sleep. We’re falling back on checklists to keep her on track and helping her get dressed and reminding her of where things are or what she was just doing. Easy things are becoming more difficult again and her memory seems to be failing her again.

I see her frustration. I see her confusion. I feel her fear and anxiety as she loses control of her body. Last night I held her on the bathroom floor when she should have been snuggled in her bed and I watched her face contort in pain and her muscles twitch involuntarily and I wanted to scream for her. It is not fair!

I hate this disease. I hate what it does to my baby’s body and her brain. I hate the toll that it takes on our family. Yes, hate is a strong word, and it isn’t one that I toss around lightly, but tonight I feel it.

I know that we are the blessed ones. It could be worse, so much worse. We’ve experienced worse, and we see those who live with worse every day. I don’t take that for granted.

But tonight I’m mad. I don’t doubt the goodness of God and I don’t doubt that He is working a plan greater than me and my feelings. I know that my girl brings glory to Him and that ultimately she is His. I have hope that this is not it, that we will see complete healing. But in this moment I feel angry.

And I share that not for pity. I’m not looking for a pat on the back, nor do I need anyone to tell me that I’m wrong. I put this out there to encourage someone else who doesn’t understand the why, who feels angry or frustrated or disappointed, who keeps waiting for that prayer to be answered, who is weary and worn, who feels alone or unnoticed.

You’re not alone. And feeling those feelings does not make you any less. I understand. Our paths may be different, but I get the emotions and the thoughts and the feelings.

Better yet, He knows. The Maker of the heavens and the earth knows your every thought before you even think it. He has formed you and given you purpose, and He loves you with a love like no other. He is good. He is mighty. He is faithful and just. He hears you, He sees you, and He is with you.

In that truth is where I find my rest tonight. I’m praying you do the same, friends ❤️

“He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is He.” (Deuteronomy 32:4)

“O Lord, you have searched me and you known me! You know when I sit down and when I rise up you discern my thoughts from afar... You hem me in behind and before, and lay your hand upon me.” (Psalm 139:1, 5)

September already?!

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Y’all, I just can’t seem to keep to a schedule with these blog posts! My goal for the last year has been to get on a more regular schedule for posting, with at least one post each week.

The last post I shared was in July. It is now September. Suffice it to say my plan is not working.

Anyway, since July things have been pretty calm when it comes to Harper. Now, in my own life with school and work and three children and a husband, not so calm, but maybe one day I’ll get around to a post about all that (or maybe not, given my track record…)

Harper started first grade and has adjusted so well thus far. She is all about becoming more independent and is so excited about learning new things. It has by far been our smoothest transition yet with her, which is an absolute answer to prayer.

As far as seizures go, I was feeling pretty confident in our level of control. We had not seen any daytime seizure activity since her hospital stay, and we spent the last couple of months weaning off of one of her medications. However, those pesky things have been trying to make a reappearance, so we are on heightened alert right now. She is back to having very restless sleep and waking up several times a night, and we have seen some seizure activity pretty consistently in the last week while she’s awake. Fortunately those episodes have not progressed to the full-blown tonic-clonic seizures, so we are still counting our blessings!

We do have a message in to the doctor to see what our next step is to stop these episodes since Harp is down to one med right now, and we have a trip to Duke on the schedule this week. While we have transitioned her seizure care to a neurologist at Johns Hopkins, we still have regular follow-ups and scans with her neurosurgeon at Duke. This week she will have an MRI to monitor the cysts and fluid in her brain, and we are praying that she will be cooperative and expecting nothing but good news!

This morning at church I heard a great message, and one of the points the pastor made really resonated with me. See, Harper is 6 1/2 years old now. We have been doing this for that many years, and we have been steadily praying all along the way. And while we have seen great miracles worked in her, we have not witnessed that total healing completely manifested yet. (And I do emphasize yet because I know it’s coming!).

We get tired. We get discouraged. We have our questions and wondering and not understanding. But this morning the pastor said something along these lines (and I’m sure he said it much more eloquently, but you’ll get the gist)- oftentimes God does not change our circumstances, but He changes US.

We are still in this battle. We still fight every day and our entire family is impacted in ways most people don’t even know. It’s been a long battle. BUT GOD has been faithfully changing each one of us along the way, revealing Himself in ways we never would have seen before, and growing us in ways that we would have never experienced. Our journey isn’t over, and He isn’t finished with us yet. We will choose to be thankful and give Him praise for all He has done, all He is doing, and all that He will still do. He is GOOD, y’all!

First Flights & Faithfulness

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It was a big weekend for Harper (and Mom)… she took her first airplane ride!

She was super excited about it and had a blast, but unfortunately the destination was not so exciting. We had to return to Baltimore for follow-up testing regarding her ESES diagnosis. Since we were just there a month ago and the trip took about ten hours in the car by the time we made all the stops along the way, we opted for the one-hour flight this time. Yes, it was more expensive. Yes, it was a bit scary to maneuver the airports and big city alone with her. But all in all, totally worth it for her comfort!

Harper had an overnight EEG, a re-evaluation of certain items on her neuropsych testing, and a follow-up with the neurologist. The results from everything have been somewhat complicated.

We received the full report from her testing last month, which showed a lot of concerns developmentally. While she has made great strides and progress in so many ways, there has unfortunately been a lot of regression in other areas. I won’t lay out all of those details here, but there is a lot for us to process and consider, and decisions to pray over.

As for the ESES, the good news is that the medicine has decreased the intensity of her seizure activity in her sleep, and there were improvements in one area of her cognitive testing. However, there is a flip side to that. First, while the seizure activity is less intense, it is still at the same frequency, and the testing indicated that her memory is still regressing instead of improving as they had hoped. The next solution would be higher doses of the medicine she’s on- but we just had to decrease it because of the side effects.

We are going to instead try weaning her off of her original medicine to see if perhaps the combination of the two medicines is the cause of the severe side effects we’ve seen. This will be a two-month process, and will be re-evaluated if her daytime seizures start again, but if it goes well, we will then look at tackling the ESES more aggressively with the other medicine.

At times this journey seems so long. There is so much trial and error. There are so many questions without definitive answers. And oftentimes there are so many answers we don’t want to hear. There are times that I get angry about it, and times that I just feel sad as I wade through all of the information that comes at us. Sometimes I wonder how after over six years of this road I can still trust and believe.

Here’s how- the faithfulness of God. I see His faithfulness in every little step we take. Every milestone she makes. Every day she wakes me up with that sweet smile and too-tight hug. Every reminder she gives me and every tooth she loses and talks about infinitely. Every word she learns to read. Every song of praise that leaves her lips. Every prayer she says and every time she raises her hands in worship. Every story she tells with such animation. Every time she falls but bounces right back. Every giggle, every dance, every time I hear her little voice say, “Mommy.” Every time I watch her play with her dolls or be brave or try and try again… it is all because of Him.

And because I’ve seen His faithfulness in all the small things, I know He is faithful in the big things.

He who calls you is faithful; he will surely do it. -1 Thessalonians 5:24

Let us hold fast to the confession of our hope without wavering, for he who promised is faithful. -Hebrews 10:23

For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! Psalm 117:2

Real.

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The last week or so has been a struggle.

I usually try to post the good things on here- the answered prayers, the blessings, the good news- and even when the news isn’t the greatest, I try to focus on the good that is there. But today I’ll just be honest, because I think there is danger in putting up a happy front all of the time and not being real.

This week has been a lot of real. It has been bouncing around to appointments with a child who screams for thirty minutes in the car. It has been watching my usually-bouncy-and-happy little girl battle fatigue and aggression, spacing out while I’m talking to her and spending the majority of her day crying, uninterested in the things that she once enjoyed. It has been difficult conversations with doctors. It has been hard-to-swallow information and diagnoses that hurt my heart. It has been pages of reports that bring me to my knees and fear that threatens to cripple me. It has been reverting back to checklists and schedules and techniques to ease my girl’s days as her mind and body grapple with medications that wreck her. It has been saying no to many of the things we usually enjoy this time of year and praying that my other girls will understand. It has been painful, it has been challenging, and it has been lonely.

I found myself weeping one night, which is something I don’t often do. I am just not a crier, but the floodgates opened and as I sat there in a puddle of tears, I was shocked as I realized that I was mentally berating myself for being emotional. I was downright angry at myself for crying. “Get it together! You’re stronger than this! You can’t solve any of this by crying over it!”

And as I chastised myself, I felt the Lord whisper to my heart, “You’re wrong.”

The fact of the matter is, I cannot get this together. This situation is far beyond me, and that is hard for me to accept. I am a fixer. I want to make everything better, especially for my babies. But this time I can’t. Now, don’t get me wrong- I won’t stop trying. I will fight for my girl, even if that means traveling all over the U.S. to get her help or telling a doctor that some of their recommendations just aren’t happening because while they may know her condition, they don’t know her.

But sometimes my fighting isn’t enough, and I have to realize that. Sometimes my fighting needs to be less of my own efforts and more of my prayers to the One who can get this all together. Sometimes I need to do less standing up and running around and more kneeling down and surrendering. (And by sometimes, I mean all the time!)

I also came to the realization that I am not stronger than this. I am weary, I am worn, and I am weak. I’m not strong enough to face this! But the One who is in me is, and His strength is perfected in my weakness. And He does not expect me to face this in my own strength.

As for all that crying? Well, the tears may not solve anything, but the Bible says that God sees them all and that He cares. He draws near to and heals the broken-hearted. Psalm 56:8 in the Message translation says it this way… “You’ve kept track of my every toss and turn through the sleepless nights, each tear entered into your ledger, every ache written into your book.” The tears matter, and my brokenness drives me even closer to Jesus.

So, to those of you who need to hear this reminder, here you go: it’s okay to feel broken. It’s okay to not have all of the answers or be able to fix it all. It’s okay to feel sad, to feel weak, and to feel scared or angry or disappointed. It’s okay! Feel all the feelings. Let it all out.

BUT- don’t stop there. Push through those emotions, cry out to God, and let Him heal your hurt as only He can do. Let it all out to the One who can take it all and bring beauty from ashes. Let Him hold you and mold you and lift your tired bones back up from the mess. We may not get up off the floor with all the answers, but we can step forward with the One who already knows the outcome. I don’t know about you, but I would much rather grab His hand and walk on than hide away and wallow in my tears.

Be real, but be real to the real God. And if you need a friend to lift you to the real God, I’m here ❤️