The clock said 5:30 a.m. as I woke up to Calvin's screams this morning. It felt much earlier. By 7:30 we were at emergency due to fevers and suspected seizures. By noon Calvin had been thru emergency, blood tests, an EEG, and a visit to the neurodevelopmentalist.
Darryl and I came home at 1:00 and grabbed a bite for breakfast. We are so thankful for family, especially our parents, who always take our kids in these situations. I really have no idea what we'd do without them. I hate being a burden to my family but at the same time realize they are such a blessing for us.
We are overwhelmed by all of the reports and news, well, bad news, that consistently streams our way. In the past few days we've learned some important things.
Calvin's brain may be shrinking in size. This means he may have a progressive case, in which he would continue to decline until he would pass away. Blood tests have been sent to Mayo to determine if he has a metabolic disorder.
The other option is that he has a non-progressive case. This means he will remain at the same stage of development (6 weeks) for the rest of his life. He is almost 8 months now. He will never sit, walk or talk and has cortical blindness.
Both options are devastating.
But the hardest part is just getting through each day right now. Calvin is miserable and in pain a lot. Do you know what it's like to have a kid with a really bad ear infection? They are miserable and really nothing consoles them. That's what Calvin is like 95% of the time. It's attributed to neuro-irritability plus reflux plus headaches. It is so difficult to see him so uncomfortable and not be able to comfort him.
I often feel guilty because all my time is spent trying to care for Calvin, which leaves the rest of my kids without a mom. As much as I try to be there for them, I'm just not. I find myself too often impatient with them when they are doing nothing but being kiddos who want their mom.
Please pray for grace for the day. Most days feel too difficult to begin but we continue to lay all of these things in the Lord's hands. Trusting Him for strength, sanity, and perseverance. Trusting Him to lead us one more day.
Well, there you have it. That's how we're really doing. Life isn't always easy, is it? I'm sure you know that too, maybe in different ways. I keep remembering God's promise that joy does come in the morning. We are waiting for that morning.
8 comments:
Beth
said...
Kara, Calvin is beautiful. I wish I could snuggle him up in my arms! :) Thanks for your update; it helps to know how to pray for you.
Kara, with tears streaming down my face I have to also say that your sweet boy is so beautiful and I also wish I could snuggle him and give him kisses. He is precious, precious, precious. I hurt so much for you, because I know -- in very minor ways by comparison -- the ache in not being able to make the hurt better. I will be praying that God will lift you up more and more, higher and higher, until you're just on a different plane than the rest of us, enjoying His peace and comfort like no other. Please know that my thoughts are with you now and in the difficult times ahead, as you all figure out what needs to be done to care for your precious boy. May God bless you abundantly for the courage that you have and the love that you pour out on your children. Don't feel guilty; God knows exactly what He's given you to deal with. Your children understand! With lots of hugs, Becky
love you , Kara! You are all glowing that picture...God is indeed good to enliven our countenance even when we feel too overwhelmed to take the next step! Noah, Evie and Sophie indeed look so happy! You kids are doing great and though you might not be there in mind YOU ARE THERE...and they know it! Dont be hard on yourself, God is loving on your other kids and Calvin in ways you can't see. Praises for a supportive family that is there for you. We miss you but know you are where you should be right now. Sheryl R.
Kara, words can't express what I'm feeling for you all right now, but as I read your this entry God impressed on me a verse that I've returned to many times since I was a teenager. When you have a minute, read 1 Cor 10:13, and replace temptation with trial. God is faithful, and He will supply all you need to get through this time. It can't be easy to praise God in this time, but I'm praising Him that you and Daryl are surrounded by family who can support you, and care for your other kids while you struggle to care for Calvin. Please don't feel guilty about that. I also praise God that this hard time is drawing you and Daryl closer to each other, as you lean on each other and Him to get you through. As Sheryl said, you are missed here, but we know you are where you should be. Will continue praying for you both, and for Calvin, and for your other precious children. Love you all heaps. Karen
Beautiful photos, Kara, and thanks for the update. Our prayers are unceasing for Calvin, you & Darryl, your kids...and I'm so thankful that you guys can be near your family. I am certain that they are honored to step in when you're lacking the energy or sanity to be a mom to 4 different kiddos at once. What a relief for you! Much love.
Dear Friend, Know that we are lifting you and your precious family up to our Father who knows all and is sovereignly in control of all. We love you all very much and continue to pray that God will give you the grace needed to face each day. Just one at a time. Much love to you as we continue to bring you before the throne of grace.
hi kara, i came across your blog today though a link from carly [koster]'s facebook page. and since it is a new personal policy of mine to leave some sort of comment on each blog post i read, i wanted to say, at the very least that you are doing a good job. you are a good mommy. and i am trusting with you for the Morning. also, i'm saying a prayer for Calvin (and all of you) before I move on with this day. brooke
8 comments:
Kara, Calvin is beautiful. I wish I could snuggle him up in my arms! :) Thanks for your update; it helps to know how to pray for you.
Kara, with tears streaming down my face I have to also say that your sweet boy is so beautiful and I also wish I could snuggle him and give him kisses. He is precious, precious, precious. I hurt so much for you, because I know -- in very minor ways by comparison -- the ache in not being able to make the hurt better. I will be praying that God will lift you up more and more, higher and higher, until you're just on a different plane than the rest of us, enjoying His peace and comfort like no other. Please know that my thoughts are with you now and in the difficult times ahead, as you all figure out what needs to be done to care for your precious boy. May God bless you abundantly for the courage that you have and the love that you pour out on your children. Don't feel guilty; God knows exactly what He's given you to deal with. Your children understand!
With lots of hugs,
Becky
love you , Kara! You are all glowing that picture...God is indeed good to enliven our countenance even when we feel too overwhelmed to take the next step! Noah, Evie and Sophie indeed look so happy! You kids are doing great and though you might not be there in mind YOU ARE THERE...and they know it! Dont be hard on yourself, God is loving on your other kids and Calvin in ways you can't see. Praises for a supportive family that is there for you. We miss you but know you are where you should be right now.
Sheryl R.
Kara, words can't express what I'm feeling for you all right now, but as I read your this entry God impressed on me a verse that I've returned to many times since I was a teenager. When you have a minute, read 1 Cor 10:13, and replace temptation with trial. God is faithful, and He will supply all you need to get through this time.
It can't be easy to praise God in this time, but I'm praising Him that you and Daryl are surrounded by family who can support you, and care for your other kids while you struggle to care for Calvin. Please don't feel guilty about that. I also praise God that this hard time is drawing you and Daryl closer to each other, as you lean on each other and Him to get you through. As Sheryl said, you are missed here, but we know you are where you should be.
Will continue praying for you both, and for Calvin, and for your other precious children. Love you all heaps.
Karen
Beautiful photos, Kara, and thanks for the update. Our prayers are unceasing for Calvin, you & Darryl, your kids...and I'm so thankful that you guys can be near your family. I am certain that they are honored to step in when you're lacking the energy or sanity to be a mom to 4 different kiddos at once. What a relief for you! Much love.
Dear Friend,
Know that we are lifting you and your precious family up to our Father who knows all and is sovereignly in control of all. We love you all very much and continue to pray that God will give you the grace needed to face each day. Just one at a time. Much love to you as we continue to bring you before the throne of grace.
Jodi Beck
We prayed for you, Calvin, and your family just now. We are trusting God for you.
Love, Casey
hi kara,
i came across your blog today though a link from carly [koster]'s facebook page. and since it is a new personal policy of mine to leave some sort of comment on each blog post i read, i wanted to say, at the very least that you are doing a good job. you are a good mommy. and i am trusting with you for the Morning. also, i'm saying a prayer for Calvin (and all of you) before I move on with this day.
brooke
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