Yesterday I was at the hospital with Caleb by myself while Jonah and Daniel were home. I decided to go out to lunch by myself as a little treat. While trying to decide where to go, I texted Daniel and asked him, "On a scale of 1 to incredibly pathetic, where would you rate going to an all-you-can-eat pizza buffet for lunch by myself?" His reply was not in favor of this decision, so I thought better of it and went to a cafe instead. Pregnant or not, I should probably draw the line somewhere.
Monday was my day to be home with Jonah and we went to the little parade in our town. I love having these little normal life experiences, things some people might take for granted, but feel like heaven to me. It has been really hard to come back to the hospital the last couple times I have gone home. Obviously I am SO ready to see Caleb each time, but I just want to have a normal week and do normal things and actually live in the new house we bought. Daniel drove home to switch places that night, and as I drove back to Indy, I wondered how much longer we will have to do this. I talked to God about it a little, and I felt comforted. He reminded me that He is with me. And He reminded me to be patient while He builds my testimony. That was an encouraging thought; he is building a testimony for me. The process of that is painful, but I do get excited thinking about how God will use, and already does use, our story.
We are having a pretty good day today but I am anxious for my family to all be in one place again after being in separate places since Friday when Jonah left for my dad's. It is always a nice little reunion after some of us have been home. Caleb has asked every day where Jonah is and I was happy to be able to say, "He will be back today!" It especially helped because I don't think Caleb feels great today. He has been throwing up, and his heart rate has been super high and he is out of breath. Just stuff that happens with kids that have heart failure. I know he will perk up when his brother and daddy show up. And I will too.
We're just waiting. Waiting, waiting, waiting. And being hopeful. I have the picture in my head of Caleb getting a heart and us coming home in time to actually enjoy summer. He has never seen his own home, his own bedroom and play room. Or his own car. There's a whole new life awaiting him once he leaves this hospital. And I'm ready to introduce him to it!
Wednesday, May 29, 2013
Thursday, May 23, 2013
An update on antibodies
We found out today that Caleb's antibody levels have remained pretty even and they have NOT reached a level that would allow his listing to change. So he continues to have two antibodies that must be avoided in a donor heart. Of course that wasn't the news I would prefer, but it didn't upset me. We want to wait for the PERFECT heart and we want this heart to last a really long time, so we certainly respect the fact that the transplant team are very conservative. I still have this feeling that his new heart is coming, and hopefully soon. I'm praying for a reason to do a Memorial Day weekend happy dance!
Tuesday, May 21, 2013
More stuff God is teaching me
It was Crazy Town in our hospital room today. The boys had way too much energy, and attitude, for what little space we live in. When the doctors came in for rounds, I tried to act like I was NOT mortified by the fact that Jonah had his nose in the corner for spitting on Daniel. Come on in folks, don't mind the noise, just a little parenting going on in this room. Naps did everyone a lot of good and even though the energy level only increased throughout the day, we nipped the attitude in the bud. Score one for the parents!
Caleb's blood was drawn for his antibodies to be tested again... hopefully we will know the results in the next day or two. I appreciate all your prayers that these antibodies would be gone. We are praying for an amazing answer from the doctors on this one.
In other Caleb news, he is so fat. That's not really news if you've seen him, or especially if you've tried to pick him up recently. He weighs 30 pounds! He is a beast! He looks like he must have eaten that scrawny little kid that got admitted to the hospital way back on November 1st! Yes, a little bit of that is because he retains fluid, but mostly it is legitimate weight gain. It's just another example of a positive thing that has come from waiting this long. The other kiddos that have gotten hearts have all been really skinny... no one would ever describe Caleb as skinny now. The boy has multiple chins and a gut that makes him look like he's trying to keep up with his mama's growing belly. Thank you God for the physical reserve he will have after surgery, with all that chunk to help him recover and get strong fast.
One more bit of family news before I get to the meat of this blog post: Daniel and I got invited to attend the national Donate Life conference this year, which happens to be in Indy in June, to speak about Caleb and share our story. We are really humbled that God keeps giving us opportunities, big and small, to talk about our experiences in the last year. We pray that what we share would act like a big fat spotlight drawing attention to God and His goodness.
OK, so on to the meat. You have probably noticed by the tone of this post that I'm in a pretty good place right now. It is because God has been speaking to me a lot and yet again changing the way I think about this time in my life. You know, if you're thinking how exhausting all my ups and downs are, let me tell you, they ARE exhausting. But I think that's how we grow into maturity. I don't wallow in the downs... I process through them and ask God about them and learn from them. And if I allow Him into the mess of my life, He always brings me comfort and joy just when I desperately need it most.
So last week there was this other family that came to Riley with their little daughter and they had just found out that she had cancer. I knew the father when we were kids and I know his family and was very surprised to run into him and his wife in the cafeteria one day. We talked for a bit and connected quickly, especially because they also follow Jesus and we could relate to each other on a faith level. Of course I was not thankful for the reason they were here, but I WAS thankful that God had crossed our paths with another couple that perhaps we could get to know and be friends with here at Riley. Well, that opportunity was short-lived because just literally a few days later, they got the incredible news that their daughter's tests showed that her cancer was mostly benign and she wouldn't even need chemo or radiation. In fact, they got to go home shortly thereafter.
I was so happy for them. I had only just talked to them a couple times and they were gone, sent home with good news. And yet I couldn't get the thought out of my mind... some kids go home with good news, and some kids don't. Some kids get better and some kids die. There wasn't even a "why" to my thoughts, I was just trying to accept the reality that there seems to be no rhyme or reason to the different outcomes people are dealt. I was taking a walk by myself thinking about this, thinking about how that family was here a matter of days, they prayed hard and believed God would make their daughter better, and then He did and they went home. And thinking about how different my own story is from that. I'm waaaay past the point of wondering if I just had stronger faith or something if maybe MY kid would get better too. I don't think those kinds of things anymore. I don't feel resentful or jealous, I just (begrudgingly) accept that for reasons way over my head, God has chosen THIS path for MY family.
And as I was thinking this, as I was pondering how much adversity there's been in our life and all the struggle and pain and fear and disappointment that our life includes at times, God cut through my thoughts with a single word: "favored". I almost stopped walking. Excuse me, what, God? Favored? What on earth does that mean? I am reflecting on the suffering of my life and You interrupt with "favored"? And then I remembered what I've been reading about in my Bible about Mary, Jesus' mom. I've been thinking about her a lot lately, and I remembered something about her. When an angel showed up to tell her she was going to have a baby even though she was a virgin, and the baby was going to be the son of God, the angel said, "Greetings, favored woman!" And Mary was confused, probably thinking something like, "Favored? How am I favored?" The angel explained what was about to go down, and after receiving what had to be the most mind-blowing information of all time, Mary's response was resolute. She said to him, "I am the Lord's servant. May everything you have said about me come true."
Then I realized what God was saying to me. Mary had the awesome privilege of being the mother of Jesus, but with that privilege came the personal sacrifice of watching her son go through unthinkable pain. I mean, think about what this woman had to endure as a mother... watching her son grow up, knowing he only sort of belonged to her, and witnessing him being rejected, tortured and eventually killed. And this woman was "favored"? That doesn't sound like being favored, it sounds like being punished. But I think that's what God is saying. His plans almost never involve things going like WE would map them out. His plans almost always involve our own discomfort, disillusionment, pain and suffering, until we have been stripped of all our own plans and desires for this life. Until we are totally and completely surrendered to whatever path He is choosing for us. Maybe it should never be our goal to achieve this relaxed, easy, planned-out life. I'm pretty sure you can't follow Jesus and expect that. Jesus calls us to live in Opposite World, where instead of seeking our own comfort and pleasure, we seek to live a life that brings attention and fame to God. Instead of trying to live a nice, happy life, we accept the circumstances HE chooses for us, learning to not only be content with the cards He deals us, but to even find joy and use every circumstance for His purposes. I know that seems like crazy talk, but if you know Him like I am getting to know Him, you know that actually this is the only way to live a full, abundant, amazing life. God was whispering to me that day that I am favored by Him, His beloved daughter, one that He has chosen to deal a lot of pain, but pain that He is using every drop of for His good plans. And I want so badly to be able to look in the face of all the craziness around me and say to Him, like Mary did, "I'm your servant. Let everything You want to do in my life come to be."
Do I think I should stop praying for God to give Caleb a new heart? No way, of course I pray that every day. I pour my heart out to God all the time, and tell him how much I want Caleb to live, and be strong and have a long life. But I'm learning to also accept when He doesn't answer my prayers the way I want. And I know now that just because He hasn't answered my prayers the way I want doesn't mean He is punishing me. Quite the opposite. It means I am favored by Him and He has chosen to use my life for bigger purposes than I ever could have dreamed up. Help me to trust You Lord, and help me to believe with all my heart that what You're doing is far better than what I can even imagine.
Caleb's blood was drawn for his antibodies to be tested again... hopefully we will know the results in the next day or two. I appreciate all your prayers that these antibodies would be gone. We are praying for an amazing answer from the doctors on this one.
In other Caleb news, he is so fat. That's not really news if you've seen him, or especially if you've tried to pick him up recently. He weighs 30 pounds! He is a beast! He looks like he must have eaten that scrawny little kid that got admitted to the hospital way back on November 1st! Yes, a little bit of that is because he retains fluid, but mostly it is legitimate weight gain. It's just another example of a positive thing that has come from waiting this long. The other kiddos that have gotten hearts have all been really skinny... no one would ever describe Caleb as skinny now. The boy has multiple chins and a gut that makes him look like he's trying to keep up with his mama's growing belly. Thank you God for the physical reserve he will have after surgery, with all that chunk to help him recover and get strong fast.
One more bit of family news before I get to the meat of this blog post: Daniel and I got invited to attend the national Donate Life conference this year, which happens to be in Indy in June, to speak about Caleb and share our story. We are really humbled that God keeps giving us opportunities, big and small, to talk about our experiences in the last year. We pray that what we share would act like a big fat spotlight drawing attention to God and His goodness.
OK, so on to the meat. You have probably noticed by the tone of this post that I'm in a pretty good place right now. It is because God has been speaking to me a lot and yet again changing the way I think about this time in my life. You know, if you're thinking how exhausting all my ups and downs are, let me tell you, they ARE exhausting. But I think that's how we grow into maturity. I don't wallow in the downs... I process through them and ask God about them and learn from them. And if I allow Him into the mess of my life, He always brings me comfort and joy just when I desperately need it most.
So last week there was this other family that came to Riley with their little daughter and they had just found out that she had cancer. I knew the father when we were kids and I know his family and was very surprised to run into him and his wife in the cafeteria one day. We talked for a bit and connected quickly, especially because they also follow Jesus and we could relate to each other on a faith level. Of course I was not thankful for the reason they were here, but I WAS thankful that God had crossed our paths with another couple that perhaps we could get to know and be friends with here at Riley. Well, that opportunity was short-lived because just literally a few days later, they got the incredible news that their daughter's tests showed that her cancer was mostly benign and she wouldn't even need chemo or radiation. In fact, they got to go home shortly thereafter.
I was so happy for them. I had only just talked to them a couple times and they were gone, sent home with good news. And yet I couldn't get the thought out of my mind... some kids go home with good news, and some kids don't. Some kids get better and some kids die. There wasn't even a "why" to my thoughts, I was just trying to accept the reality that there seems to be no rhyme or reason to the different outcomes people are dealt. I was taking a walk by myself thinking about this, thinking about how that family was here a matter of days, they prayed hard and believed God would make their daughter better, and then He did and they went home. And thinking about how different my own story is from that. I'm waaaay past the point of wondering if I just had stronger faith or something if maybe MY kid would get better too. I don't think those kinds of things anymore. I don't feel resentful or jealous, I just (begrudgingly) accept that for reasons way over my head, God has chosen THIS path for MY family.
And as I was thinking this, as I was pondering how much adversity there's been in our life and all the struggle and pain and fear and disappointment that our life includes at times, God cut through my thoughts with a single word: "favored". I almost stopped walking. Excuse me, what, God? Favored? What on earth does that mean? I am reflecting on the suffering of my life and You interrupt with "favored"? And then I remembered what I've been reading about in my Bible about Mary, Jesus' mom. I've been thinking about her a lot lately, and I remembered something about her. When an angel showed up to tell her she was going to have a baby even though she was a virgin, and the baby was going to be the son of God, the angel said, "Greetings, favored woman!" And Mary was confused, probably thinking something like, "Favored? How am I favored?" The angel explained what was about to go down, and after receiving what had to be the most mind-blowing information of all time, Mary's response was resolute. She said to him, "I am the Lord's servant. May everything you have said about me come true."
Then I realized what God was saying to me. Mary had the awesome privilege of being the mother of Jesus, but with that privilege came the personal sacrifice of watching her son go through unthinkable pain. I mean, think about what this woman had to endure as a mother... watching her son grow up, knowing he only sort of belonged to her, and witnessing him being rejected, tortured and eventually killed. And this woman was "favored"? That doesn't sound like being favored, it sounds like being punished. But I think that's what God is saying. His plans almost never involve things going like WE would map them out. His plans almost always involve our own discomfort, disillusionment, pain and suffering, until we have been stripped of all our own plans and desires for this life. Until we are totally and completely surrendered to whatever path He is choosing for us. Maybe it should never be our goal to achieve this relaxed, easy, planned-out life. I'm pretty sure you can't follow Jesus and expect that. Jesus calls us to live in Opposite World, where instead of seeking our own comfort and pleasure, we seek to live a life that brings attention and fame to God. Instead of trying to live a nice, happy life, we accept the circumstances HE chooses for us, learning to not only be content with the cards He deals us, but to even find joy and use every circumstance for His purposes. I know that seems like crazy talk, but if you know Him like I am getting to know Him, you know that actually this is the only way to live a full, abundant, amazing life. God was whispering to me that day that I am favored by Him, His beloved daughter, one that He has chosen to deal a lot of pain, but pain that He is using every drop of for His good plans. And I want so badly to be able to look in the face of all the craziness around me and say to Him, like Mary did, "I'm your servant. Let everything You want to do in my life come to be."
Do I think I should stop praying for God to give Caleb a new heart? No way, of course I pray that every day. I pour my heart out to God all the time, and tell him how much I want Caleb to live, and be strong and have a long life. But I'm learning to also accept when He doesn't answer my prayers the way I want. And I know now that just because He hasn't answered my prayers the way I want doesn't mean He is punishing me. Quite the opposite. It means I am favored by Him and He has chosen to use my life for bigger purposes than I ever could have dreamed up. Help me to trust You Lord, and help me to believe with all my heart that what You're doing is far better than what I can even imagine.
Monday, May 6, 2013
A specific prayer request
There have been a lot of parenting moments lately where I wonder if I am failing miserably to raise my children with any sense in their heads. Or if maybe they are being permanently ruined by having to live in a hospital for so long. They have so much attitude sometimes! I have to remind myself that I am raising a typical 4-year-old and a typical 2-year-old and that even if we didn't live in a hospital, and even if I was doing everything perfectly, they would still misbehave and act out sometimes. Or all the time. Tonight Jonah was mad at me for something and all in a huff and he said, "Mommy, you have lost your privileges to read to me from now on. Only Daddy can read to me now." He said this while sitting on the toilet which made it hard to take him seriously. If he wasn't being such a stinker it would have been hilarious. I have had to make an extra effort to be patient with him lately, because he's having a really hard time when he is told 'no'. Parenting is already the hardest thing to do on the planet, but you add our collective stress level to any given discussion and it's pretty amazing that we all four still really like being around each other. So I will cut myself some slack and believe that we are doing SOMETHING right if at least my son knows how to correctly use the word "privileges" and if he believes not being able to read books would be a serious consequence.
Even though this time is hard, I refuse to pity my children. It would be so easy to feel sorry for them, for having to be here, and let them get away with more than usual. But that's not going to do them any favors. God, give me extra patience and understanding for them, and the strength to discipline and teach them, even here.
Even with the extra energy we've needed to parent lately, things have been good the last week or so. Caleb had a rough couple of days last week, throwing up a lot and just looking puny, but he has been much better the last few days. That boy has a healthy dose of willfulness, I swear. We have prayed for him to be a fighter since before he was born, and we see that in him in both wonderful ways and challenging ways. (Caleb quote of the day: "I. Play. Ipad. NNNOOOWWW!) When it comes to his health, I'm so thankful for it. He will have a bad day or two and always bounce back. Today was a very good day, and he even ate half an orange. 21 bites! God has so obviously watched over him, because for a kid with a heart as sick as Caleb's, he has really done so well for the last six months. He has rough patches and then he always turns around. There is a lot to be thankful for.
I actually have a specific prayer request for this week. Caleb will be having some blood drawn to check his antibody levels. To refresh your memory, Caleb has some specific antibodies in his blood that most people don't have, due to the fact that he has had blood transfusions in the past. There are SIX specific antibodies the transplant team has to check everyone for, because any person who receives a transplant not only has to match a heart by size and blood type, but also by these antibodies. When Caleb was first listed, he tested positive for THREE of these antibodies, which the transplant team is almost certain is the reason it has taken so long for him to get a heart. It has made it difficult to find a suitable match for him.
To our huge surprise, a few weeks ago they did a routine lab to re-check these antibodies, and one of them was completely gone and the other two were significantly decreased. We were never aware this could even happen! The doctors said there's no real explanation for it but that it definitely helps Caleb's chances of finding a match. This week is the next routine lab, and I am so anxious for some good news, to hear that maybe one or both of the remaining antibodies are gone. Would you pray for this specific issue? Would you pray with us that when they draw this lab, they find NO antibodies and that the team can change Caleb's status to be able to receive a wider range of donor hearts? This would be a huge deal and we are really hoping for some great news. The test should be on Thursday.
Thank you for sticking with us. It amazes me that so many people continue to follow our story and care about Caleb. Thanks for having faith when ours gets weak. We are so encouraged to know that so many people are in our corner!
Even though this time is hard, I refuse to pity my children. It would be so easy to feel sorry for them, for having to be here, and let them get away with more than usual. But that's not going to do them any favors. God, give me extra patience and understanding for them, and the strength to discipline and teach them, even here.
Even with the extra energy we've needed to parent lately, things have been good the last week or so. Caleb had a rough couple of days last week, throwing up a lot and just looking puny, but he has been much better the last few days. That boy has a healthy dose of willfulness, I swear. We have prayed for him to be a fighter since before he was born, and we see that in him in both wonderful ways and challenging ways. (Caleb quote of the day: "I. Play. Ipad. NNNOOOWWW!) When it comes to his health, I'm so thankful for it. He will have a bad day or two and always bounce back. Today was a very good day, and he even ate half an orange. 21 bites! God has so obviously watched over him, because for a kid with a heart as sick as Caleb's, he has really done so well for the last six months. He has rough patches and then he always turns around. There is a lot to be thankful for.
I actually have a specific prayer request for this week. Caleb will be having some blood drawn to check his antibody levels. To refresh your memory, Caleb has some specific antibodies in his blood that most people don't have, due to the fact that he has had blood transfusions in the past. There are SIX specific antibodies the transplant team has to check everyone for, because any person who receives a transplant not only has to match a heart by size and blood type, but also by these antibodies. When Caleb was first listed, he tested positive for THREE of these antibodies, which the transplant team is almost certain is the reason it has taken so long for him to get a heart. It has made it difficult to find a suitable match for him.
To our huge surprise, a few weeks ago they did a routine lab to re-check these antibodies, and one of them was completely gone and the other two were significantly decreased. We were never aware this could even happen! The doctors said there's no real explanation for it but that it definitely helps Caleb's chances of finding a match. This week is the next routine lab, and I am so anxious for some good news, to hear that maybe one or both of the remaining antibodies are gone. Would you pray for this specific issue? Would you pray with us that when they draw this lab, they find NO antibodies and that the team can change Caleb's status to be able to receive a wider range of donor hearts? This would be a huge deal and we are really hoping for some great news. The test should be on Thursday.
Thank you for sticking with us. It amazes me that so many people continue to follow our story and care about Caleb. Thanks for having faith when ours gets weak. We are so encouraged to know that so many people are in our corner!
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