It has been a long minute since I’ve been on here – boy, time is flying. Since my last post, our Hopey girl has turned ONE! We had a sweet little party with our family; stuffed our faces with donuts and cupcakes, and enjoyed every minute of celebrating our beautiful little girl – the best gift we’ve been given.
Over and over again we were told that the first year would be the hardest. There were so many appointments, long hospital stays, tweaking seizure medications, and dealing with daily ups and downs when it came to seizure control in particular. There were many moments where we saw God work in powerful ways, and many moments where we lay in bed – confused and scared – because things weren’t looking good.
Finally – that first year was over and things were going to get easier. But in true Hope fashion, turning One didn’t make anything easier. In fact, things felt harder.
How were we STILL dealing with uncontrolled seizures?
How did she STILL not have head control?
Why was I STILL worrying about things that I thought were dealt with?
I couldn’t understand why it seemed as if her seizure control was going backwards. At one point, she was having even more seizures then we’d previously brought her to the hospital for. We were at a loss – feeling defeated, and feeling angry that this was our life…STILL.
Psalm 130 talks about waiting for the Lord. I have been clinging to this Psalm – especially these two parts in particular:
1 Out of the depths I cry to you, O LORD!
2 O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!
5 I wait for the LORD, my soul waits, and in his word I hope;
6 my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning.
The past couple of months, I have identified with the first part – I have felt like I am crying out from the depths of me – begging for God to hear my voice. And for the past couple of months I’ve also had to choose to wait for the Lord. But I don’t really know what I am waiting for.
Maybe it’s a renewed peace. Maybe it’s a deeper trust in Him. Maybe it’s a better understanding of finding joy in the midst of pain.
Because with every seizure and odd situation that comes our way, I am reminded that my only HOPE is in Jesus. Our days are as different as night and day. Hope can be having an amazing day, followed by a scary night, so putting my hope in her health only leads me to feel discouraged.
But like the watchman who waits for the Lord like one who is waiting for the morning sun to show its face, this Psalm encourages me to do the same. Wait.
For the only one who can give us true peace.
For the only one who knows what tomorrow brings.
For the only one that is sovereign over every single detail.
For those of you who are walking with us and praying for us regularly… THANK YOU! Please don’t stop. Here are a few requests we’d ask you to pray for with us:
1. Seizures: they continue to fluctuate and we are continually tweaking medications and her diet. We had a good run of a couple of weeks where she was having a low number of seizures a day, but they’ve gone back up again and we’re not sure what has caused this increase (no sickness – teething maybe?). We know that fluctuations in seizure control can be considered “normal” for her, but we’re praying that we find an effective concoction of medication that works for her.
2. Her muscle tone: she is working hard to gain stronger muscle tone, but this is no easy task. This isn’t just so that she can hold her head up, but is actually helpful for her breathing. The less pressure she has on her body/chest the easier it is for her to breathe. Her scoliosis makes it difficult for her to sit so we’re working at helping her the best ways we can with daily exercises and being aware of how she is positioned.
3. Lawren and I: we need strength. We’re really tired – more so mentally drained than physically BUT as Hope gets bigger I’m finding it harder to carry and lift her.
Thank you guys, from the bottom of our hearts. We’re grateful for each and every one of you!