Eden is 6 months old today! On one hand, the time seems to have flown by, and on the other hand, it feels like the longest, hardest six months of our lives.
Shortly after my last post, Eden began having seizures. At first, I wasn't sure if the unusual behavior was a seizure or not (though my intuition was telling me it was); I had never seen someone having a seizure and didn't really know what to expect. For Eden, her face turns off to the side and her body becomes rigid with rhythmic, pulsating movement in her arms and legs. The first one didn't last very long, but when she had another one within a couple hours of the first, we called her doctor to see what we should do. They recommended taking her to the ER right away so that she could be monitored to make sure that her body was responding to and recovering from the seizures. Even though the seizure activity was unsettling, I had been expecting it- it is one of the major symptoms associated with her diagnosis. I packed up a to-go coffee (since it was late at night) and headed to the hospital. When I walked in, Eden was crying really hard from the car ride, and I felt like every eye turned to watch us. I stepped to the back of the line to check-in, but was quickly rushed to the front of the line, and was barely asked my name before being rushed to the pediatric section of the ER where swarms of nurses and doctors immediately took her from me and began hooking her up to all kinds of monitors. When I left our home, I wasn't scared- I figured they'd actually send us home and just tell me that this was to be expected. When the doctors began surrounding her, I broke down and started to cry because it all felt more serious and grave than it had a few hours earlier. I remember a moment later when I was alone with her in the room and I started taking pictures and videos of her because I started to worry that this might be the end. That the seizures might start up and she'd have a bad one that she couldn't recover from. I took pictures of her feet and toes and close ups of her eyes. It all seems a little silly now because she's doing pretty well but that memory is etched in my mind and more vivid than most of my memories.
We ended up staying in the hospital for two days after that first episode, and the result of that was an increase in some medications- one for the seizures and another to dry up her secretions. It also put us on the fast track to get some nursing help at home and to get in with a developmental pediatrician in the area. Eden is seeing one of the best doctors in the area who specializes in kids with complex medical needs. She is a real blessing and truly cares about Eden. Each time we've seen her, she has held and kissed and rocked Eden as if she were her own grand baby. I'm so thankful for her and that she is the one overseeing all of Eden's medical care.
With that said, there are still a lot of unknowns- she still doesn't sleep very well and often cries during her feeds and we're trying to figure out if these issues are because of reflux, muscle tightness/spasticity, or if it's a separate neurological issue. The doctor believes that because of her visual impairment, she may not be distinguishing day and night, which is why she doesn't appear to have a true night sleeping schedule. Basically, we just need to pray for wisdom and help and for God to give us insight into how to help her best- I'm comforted in knowing that he knows her issues; he knows her inside and out, and he loves her, and I believe he'll give us the wisdom we need.
The nursing care has been a huge help and blessing as well. We often have a nurse as many as 4 days a week and 4 nights (though some weeks we have less days or less nights). It has helped us resume some normalcy and I feel like I can get to the grocery store or take the boys to the library or just spend some time playing with them again.
At the same time, it isn't exactly natural to hand your baby over to someone to care for her. It feels a little strange to go out as a family and not have her with us and it's an adjustment having someone else in the house with us most of the day. On the day of the nurses' orientation when there were six women in our house being trained on Eden's care, I had to hold back tears the entire day because it all felt so overwhelming and not how I would have chosen life to be. But running through my mind was the reminder from a recent sermon our pastor had preached where he said that the path ahead of us is laid with the stones of good works that God has prepared in advance for us. I kept thinking, "There are good works on this path, Sara. God has prepared them for you so that you would walk in them, so walk in them, don't be afraid, just keep going." I think it was God's kindness to remind me that this is not about me or how I wanted life to work out, that there is more going on than what my eyes can see, and that I can trust that this is for my good and for his glory. And when I'm thinking rightly, I want those things more than I want my own comfort.
So, this may seem like a sad update, and there are still some sad days, but we are finding our new normal and there are also lots and lots of good days. We love our little Eden girl and she gets all kinds of kisses from us and from her brothers. She has started smiling more frequently and often will smile just upon hearing my voice when I come into the room. She also does a little giggle when I tickle her belly or when Don tosses her in the air (the same way he tossed her brothers when they were little). She is a delight and despite the difficulty, I truly count it a privilege to love and care for her. I believe she is one of God's special ones and there is something that just feels so right about tending to her and sweetening her days with songs and kisses and snuggles.
The other day we even joked that she might end up being our easiest child. The twins were fighting over a Ninja Turtle robe, Luke was crying for milk (milka as he calls it) and Eden was just content being held. I thought, she'll never fight with her siblings, she won't have her heart broken, she won't struggle with jealousy, she is being spared a lot of heartache. And it feels pretty simple to see the task of parenting her as just loving her, taking care of her, and praying for her.
The song we usually sing to the boys before we put them to bed is "Tis So Sweet to Trust in Jesus" and I often sing that to Eden as well.
Shortly after my last post, Eden began having seizures. At first, I wasn't sure if the unusual behavior was a seizure or not (though my intuition was telling me it was); I had never seen someone having a seizure and didn't really know what to expect. For Eden, her face turns off to the side and her body becomes rigid with rhythmic, pulsating movement in her arms and legs. The first one didn't last very long, but when she had another one within a couple hours of the first, we called her doctor to see what we should do. They recommended taking her to the ER right away so that she could be monitored to make sure that her body was responding to and recovering from the seizures. Even though the seizure activity was unsettling, I had been expecting it- it is one of the major symptoms associated with her diagnosis. I packed up a to-go coffee (since it was late at night) and headed to the hospital. When I walked in, Eden was crying really hard from the car ride, and I felt like every eye turned to watch us. I stepped to the back of the line to check-in, but was quickly rushed to the front of the line, and was barely asked my name before being rushed to the pediatric section of the ER where swarms of nurses and doctors immediately took her from me and began hooking her up to all kinds of monitors. When I left our home, I wasn't scared- I figured they'd actually send us home and just tell me that this was to be expected. When the doctors began surrounding her, I broke down and started to cry because it all felt more serious and grave than it had a few hours earlier. I remember a moment later when I was alone with her in the room and I started taking pictures and videos of her because I started to worry that this might be the end. That the seizures might start up and she'd have a bad one that she couldn't recover from. I took pictures of her feet and toes and close ups of her eyes. It all seems a little silly now because she's doing pretty well but that memory is etched in my mind and more vivid than most of my memories.
We ended up staying in the hospital for two days after that first episode, and the result of that was an increase in some medications- one for the seizures and another to dry up her secretions. It also put us on the fast track to get some nursing help at home and to get in with a developmental pediatrician in the area. Eden is seeing one of the best doctors in the area who specializes in kids with complex medical needs. She is a real blessing and truly cares about Eden. Each time we've seen her, she has held and kissed and rocked Eden as if she were her own grand baby. I'm so thankful for her and that she is the one overseeing all of Eden's medical care.
With that said, there are still a lot of unknowns- she still doesn't sleep very well and often cries during her feeds and we're trying to figure out if these issues are because of reflux, muscle tightness/spasticity, or if it's a separate neurological issue. The doctor believes that because of her visual impairment, she may not be distinguishing day and night, which is why she doesn't appear to have a true night sleeping schedule. Basically, we just need to pray for wisdom and help and for God to give us insight into how to help her best- I'm comforted in knowing that he knows her issues; he knows her inside and out, and he loves her, and I believe he'll give us the wisdom we need.
The nursing care has been a huge help and blessing as well. We often have a nurse as many as 4 days a week and 4 nights (though some weeks we have less days or less nights). It has helped us resume some normalcy and I feel like I can get to the grocery store or take the boys to the library or just spend some time playing with them again.
At the same time, it isn't exactly natural to hand your baby over to someone to care for her. It feels a little strange to go out as a family and not have her with us and it's an adjustment having someone else in the house with us most of the day. On the day of the nurses' orientation when there were six women in our house being trained on Eden's care, I had to hold back tears the entire day because it all felt so overwhelming and not how I would have chosen life to be. But running through my mind was the reminder from a recent sermon our pastor had preached where he said that the path ahead of us is laid with the stones of good works that God has prepared in advance for us. I kept thinking, "There are good works on this path, Sara. God has prepared them for you so that you would walk in them, so walk in them, don't be afraid, just keep going." I think it was God's kindness to remind me that this is not about me or how I wanted life to work out, that there is more going on than what my eyes can see, and that I can trust that this is for my good and for his glory. And when I'm thinking rightly, I want those things more than I want my own comfort.
So, this may seem like a sad update, and there are still some sad days, but we are finding our new normal and there are also lots and lots of good days. We love our little Eden girl and she gets all kinds of kisses from us and from her brothers. She has started smiling more frequently and often will smile just upon hearing my voice when I come into the room. She also does a little giggle when I tickle her belly or when Don tosses her in the air (the same way he tossed her brothers when they were little). She is a delight and despite the difficulty, I truly count it a privilege to love and care for her. I believe she is one of God's special ones and there is something that just feels so right about tending to her and sweetening her days with songs and kisses and snuggles.
The other day we even joked that she might end up being our easiest child. The twins were fighting over a Ninja Turtle robe, Luke was crying for milk (milka as he calls it) and Eden was just content being held. I thought, she'll never fight with her siblings, she won't have her heart broken, she won't struggle with jealousy, she is being spared a lot of heartache. And it feels pretty simple to see the task of parenting her as just loving her, taking care of her, and praying for her.
The song we usually sing to the boys before we put them to bed is "Tis So Sweet to Trust in Jesus" and I often sing that to Eden as well.
'Tis so sweet to trust in Jesus,
Just to take Him at His Word
Just to rest upon His promise,
Just to know, "Thus saith the Lord!"
Jesus, Jesus, how I trust Him!
How I've proved Him o'er and o'er
Jesus, Jesus, precious Jesus!
Oh, for grace to trust Him more!
I'm so glad I learned to trust Him,
Precious Jesus, Savior, Friend
And I know that He is with me,
Will be with me to the end.
Anyway, we really are doing well. Eden continues to have seizures, but she hasn't been sick in quite a while and her overall temperament seems to be improving. There is lots of laughter and joy in our home and God is at work in us and (I hope) through us. This is the path that he has chosen for us and there is freedom and joy in submitting to that path and saying "Yes, Lord".
2 comments:
Sara, so blessed by this today. Crying over your faithful words about the stones of good works on the path--the path not chosen by us, but by Him. God bless you for your faithful attitude--and be your supply today and in the days ahead! A verse I've been clinging to in my own hard things of late is Psalm 62:8: "Trust in him at all times, O people; pour out your heart before him; God is a refuge for us." Love that it tells us to trust--but also that we can pour--and then the promise. Praying with thankfulness for you today. Love, Betsy Kirk
I'm speechless. You are an incredibly beautiful woman, inside and out. Your perspective and your mothering inspire and challenge me. Sending love and prayers your way, always.
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