As recently mentioned here, Mark and I have been trying to work with our specialist at Mayo Clinic and our insurance company in order for me to receive a medication which has been shown to help women with my blood disorder to have healthy, lower risk pregnancies. Turns out more than 40% of pregnancies are lost when the mother has this disorder. (That staggers the mind when I look at Emma and Hazen. What a miraculous blessing they are!!) Having that information also makes us extremely cautious about going forward with another pregnancy without medical help.
We've been extremely optimistic about this treatment option as we've waited for this news since October. Every indication was that once the insurance company had the information available and the medical reasoning why it is necessary, we would be approved.
Yesterday we received news from our insurance provider that they are denying our appeal for that medication. Stating that there isn't enough research to support its use. Note: there's not much research because its an uncommon disorder in young, otherwise healthy, women. Thus far we've only heard of Mayo Clinic ever doing any research on it.
We're just in shock right now. Once again, we had a plan in place that is now gone. We don't know which way to go, to push forward or go in a different direction. We don't know whether to close the door on more children or persevere for them. It seems that if we're having so much trouble, other families are too, and that gives us reason to push against the bureaucracy and try to make changes that might also help others. But right now we're just so tired. So confused. So disappointed.
We'd really love to have another baby. But we don't know if its going to be safe to try again without medical intervention. We're open to adoption but that is also a long, expensive, uncertain process. And if it's God's will, we want to release the desire for more children and pour our love into the two we've already miraculously been given (which, it should go without saying, we're going to do for them whether more children come along or not). There are many different roads before us but we don't know which way to go. So we feel stuck. Waiting. Wondering.
So please be praying for Mark and I as we seek the Lord's will. We want to keep our hands open for whatever He may have for us. We don't want to give up just because its hard, but we also want to be sensitive to the different ways God closes doors. We need direction.
In all this, we know that God is for us. We know He is up to more than we can see from our vantage point, that He is good and loving and worthy of all praise. We also know He desires us to know Him and follow as He leads, so please pray He would reveal Himself clearly, that we would be willing to follow and able to be changed by His Spirit. We are nothing but clay in the hands of our Potter. Let His will, be done.
Tuesday, January 31, 2012
Wednesday, January 25, 2012
From the Mouths of Babes
I'm constantly amazed by my two older kids. The way they see the world, the strength of their faith, the joy with which they encounter life. Its an honor watching them grow, being a part of their lives, getting to "train them up in the way they should go." And I am quite sure I learn at least as much from them as they do from me.
Emma and Hazen's journey through the loss of their baby brother has been very hard for me, as Mommy, to live out. Trying to explain what has happened, why it has happened and where Jairus went is something that they have needed repeated for them innumerable times in the past 12 1/2 months. I thought that they would miss him initially and then forget about him, or only bring him up if Mark or I did, or associate Jairus with sadness and unwanted change in their parents' demeanor. They keep proving me wrong. They have recently been talking about Jairus A LOT. Its been so beautiful to hear, in their own words. Here are a few of the most recent things my kids have told me about their brother, their own walks through the valley, and their Jesus...
"Mommy, Jairus isn't a baby anymore, I think he's a kid now, he's growing bigger, like me!" ~Emma
"Emma is a girl, Mommy is a girl, Daddy is a boy, Hazen is a boy, and Jairus is a boy too! Just like me!" ~Hazen
"My baby (doll) isn't going to live in Heaven with Jesus, she's going to live in my house with me. Jairus went to Heaven, but not this baby (doll), not yet. I want her to stay with me." ~Emma
"I feel sad today. I miss Jairus. He's my brother. I miss him." ~Emma
"Mommy, I lost Lightning McQueen, and you lost Jairus, right?" ~Hazen
"NO Hazen, Mommy didn't LOSE Jairus, he's in Heaven now, he's not lost!" ~Emma
"There are lots of rooms in Heaven." ~ Emma
"Mommy, I'm so happy for Jairus being in Heaven with Jesus!" ~Emma
"Look! (at photograph) It's baby Jairus! He looks like me when I was Baby Hazen! Jairus looks like me! I was so cute!" ~Hazen
"Someday we'll get to see Jairus and be with him in Heaven, that will be happy." ~Emma
What amazes me about the above quotes, is that they were all initiated by the kids themselves. They come randomly, while playing with dolls, having a snack, watching a movie, having races with cars. Hazen and Emma are both still figuring it all out. They never got to meet this mysterious baby brother, but they think of him often. They show love for him and great faith in God's goodness in bringing Jairus into Heaven. And their right, though it doesn't makes much sense to us, Jairus is in Heaven where he is happy, where there are "many rooms" prepared for God's children, where we will one day join him and know fully our Lord's good plans for our family.
And it gives me confidence, as a mother with 2 children at home and 1 in the presence of my Savior, to remember that God is always working in the hearts of little Hazen and Emma. He has sheltered them and protected them from much of the heartache of their parents and He will keep growing them in loving compassion, having walked through this valley as a family, clinging to Jesus. By His mercy, we'll keep trying to point them toward Jesus and their Heavenly Home.
Emma and Hazen's journey through the loss of their baby brother has been very hard for me, as Mommy, to live out. Trying to explain what has happened, why it has happened and where Jairus went is something that they have needed repeated for them innumerable times in the past 12 1/2 months. I thought that they would miss him initially and then forget about him, or only bring him up if Mark or I did, or associate Jairus with sadness and unwanted change in their parents' demeanor. They keep proving me wrong. They have recently been talking about Jairus A LOT. Its been so beautiful to hear, in their own words. Here are a few of the most recent things my kids have told me about their brother, their own walks through the valley, and their Jesus...
"Mommy, Jairus isn't a baby anymore, I think he's a kid now, he's growing bigger, like me!" ~Emma
"Emma is a girl, Mommy is a girl, Daddy is a boy, Hazen is a boy, and Jairus is a boy too! Just like me!" ~Hazen
"My baby (doll) isn't going to live in Heaven with Jesus, she's going to live in my house with me. Jairus went to Heaven, but not this baby (doll), not yet. I want her to stay with me." ~Emma
"I feel sad today. I miss Jairus. He's my brother. I miss him." ~Emma
"Mommy, I lost Lightning McQueen, and you lost Jairus, right?" ~Hazen
"NO Hazen, Mommy didn't LOSE Jairus, he's in Heaven now, he's not lost!" ~Emma
"There are lots of rooms in Heaven." ~ Emma
"Mommy, I'm so happy for Jairus being in Heaven with Jesus!" ~Emma
"Look! (at photograph) It's baby Jairus! He looks like me when I was Baby Hazen! Jairus looks like me! I was so cute!" ~Hazen
"Someday we'll get to see Jairus and be with him in Heaven, that will be happy." ~Emma
What amazes me about the above quotes, is that they were all initiated by the kids themselves. They come randomly, while playing with dolls, having a snack, watching a movie, having races with cars. Hazen and Emma are both still figuring it all out. They never got to meet this mysterious baby brother, but they think of him often. They show love for him and great faith in God's goodness in bringing Jairus into Heaven. And their right, though it doesn't makes much sense to us, Jairus is in Heaven where he is happy, where there are "many rooms" prepared for God's children, where we will one day join him and know fully our Lord's good plans for our family.
And it gives me confidence, as a mother with 2 children at home and 1 in the presence of my Savior, to remember that God is always working in the hearts of little Hazen and Emma. He has sheltered them and protected them from much of the heartache of their parents and He will keep growing them in loving compassion, having walked through this valley as a family, clinging to Jesus. By His mercy, we'll keep trying to point them toward Jesus and their Heavenly Home.
Wednesday, January 11, 2012
Common Question...Uncertain Answer...Long Blogpost
There is a natural question that arises after you experience the loss of a child during pregnancy. Its meant in love and honest curiosity, but its not always an easy question to answer. It's been a fairly common question I have heard since losing Jairus, but I notice it's evolved slightly as time has passed, as has my answer.
For the first few months, many people asked me something to the effect of "When are you going to have another baby?" It was assumed we would try again. Safe assumption if you know me at all. I've always wanted kids, lots of kids. We had always planned on having more children after baby #3 anyway. Could experiencing the loss of our son through stillbirth change that? Sure it could.
Early after his death, I developed a very strong Pig-Headedness about the fact that I wanted to wait a while because I feared hearing the inevitable "If Jairus hadn't died, you never would have had This child!" Which I know is a true and honest blessing for many families who lose babies. Many experience great healing through the birth of another child. I instead just got mad and dug my heels in. I wasn't ready to move on, to think about our family without him. My stubbornness wasn't the sole reason to wait, but it was a driving force for a number of months. And God would soon reveal more of what was going on, causing me to repent and thank Him for using my stubborn attitude. So time began to pass.
As time has passed, I find I hear the question of "when" less often...sometimes it is replaced with "Will you have another child?" or even "Can you have another child?" Ah...now it turns out, in our situation, these questions are something we have to consider with gravity and at length. Because after Jairus died, we were not given a very hopeful outlook on the possibility of expanding our family in the future...
My oldest, Emma, was born after a healthy. normal pregnancy with an unplanned labor-induction after it was discovered (at 40 weeks gestation) that the level of amniotic fluid around her was all of a sudden dangerously low. We were told, and assumed, it was a fluke.
18 months later (at 37 weeks gestation) after a healthy and quiet pregnancy I was induced into labor to bring Hazen into the world. My blood pressure had risen slightly and my lab work didn't look right. We were told it was pre-ecclampsia, but I didn't have any swelling and my blood pressure was way below what a typical pre-ecclamptic woman experiences. They later found I had a kidney infection. Again, we were told it was a-typical and probably not a concern.
2 1/2 years later, we excitedly waited for Baby #3. As you know from reading this blog, things didn't go as planned. We lost Jairus at 35 weeks gestation. There had been no signs leading up to the abruption. Then he was gone.
Do you see a pattern here? I do, actually, it looks more like a downward slope. Each pregnancy started healthy, then something suddenly and unexpectedly went wrong. Each time it was earlier in the 3rd trimester, each time it was something more severe. When Jairus died, it was confessed to us by our doctor AND a couple of OB/GYN specialists (I'll get back to my relationship with them) that they did not know what was going on with my pregnancies, and because they didn't know, they couldn't help. If we wanted to try again, that would be our choice, but they would probably recommend intentionally delivering prematurely (around 33 weeks gestation) in the hopes of staying ahead of what ever might happen.
That's not much to go on.
You should also know I have a rare blood disorder. It's not had much of an effect on my life, other than being unable to take ibuprofen for pain. All studies had shown there was NO connection to difficult pregnancies for women with this condition after the 1st trimester, so I had been monitored by specialists as well as my own doctor through each of the 3 pregnancies, checking blood flow and getting extra ultrasounds. Nothing had ever risen concern.
In August I got a call from my doctor.
A recent study found women with my condition are having all kinds of problems with pregnancy, during all trimesters. Specifically mentioned in the study was a-typical pre-ecclampsia and placental abruptions leading to stillbirth. The study also found that 75% of women had healthy pregnancies after being on a regiment of an experimental medication before and during their pregnancies. As you can imagine, I pretty much threw up from shock.
That was August. It's January. We've not been able to get said medication due to problems with our insurance company not wanting to deal with a new prescription. So now we're learning all about how medical insurance works, how appeals are done and how many calls and emails it takes from our end to get anything moving. God is still trying to teach me patience and trust in His timing.
That's the beginning of a long answer to a short question. Do we want more children? We'd love to have more. Will we have more? I honestly don't know. I'm not at a place where I can say with any certainty what the future picture of our family is. There are many ways families grow and come into being. We're open to the Lord's leading. We're trying to wait. We recognize that what God's plans are for our family are in His hands. And that's where I want our family to stay. As hard as it is to not know, to not be able to plan for the future in this aspect, we are waiting for the Lord to guide us, to lead us, to teach us to love Him and rejoice in Him regardless of whether or not we ever have more children or not.
Our children are a treasure to us, one we desire to hold with open hands, not clenched fists. It has taken me a long time to be able to release my hopes and dreams for my future to the Lord. To know and feel in my depths that He is good and will do what is good. We have had the painful blessing of seeing Him working through even the death of Jairus, we know that God is for us, not against us. We want Him to be shown off as good. And His goodness is not dependent on the number of children He chooses to give us.
For the first few months, many people asked me something to the effect of "When are you going to have another baby?" It was assumed we would try again. Safe assumption if you know me at all. I've always wanted kids, lots of kids. We had always planned on having more children after baby #3 anyway. Could experiencing the loss of our son through stillbirth change that? Sure it could.
Early after his death, I developed a very strong Pig-Headedness about the fact that I wanted to wait a while because I feared hearing the inevitable "If Jairus hadn't died, you never would have had This child!" Which I know is a true and honest blessing for many families who lose babies. Many experience great healing through the birth of another child. I instead just got mad and dug my heels in. I wasn't ready to move on, to think about our family without him. My stubbornness wasn't the sole reason to wait, but it was a driving force for a number of months. And God would soon reveal more of what was going on, causing me to repent and thank Him for using my stubborn attitude. So time began to pass.
As time has passed, I find I hear the question of "when" less often...sometimes it is replaced with "Will you have another child?" or even "Can you have another child?" Ah...now it turns out, in our situation, these questions are something we have to consider with gravity and at length. Because after Jairus died, we were not given a very hopeful outlook on the possibility of expanding our family in the future...
My oldest, Emma, was born after a healthy. normal pregnancy with an unplanned labor-induction after it was discovered (at 40 weeks gestation) that the level of amniotic fluid around her was all of a sudden dangerously low. We were told, and assumed, it was a fluke.
18 months later (at 37 weeks gestation) after a healthy and quiet pregnancy I was induced into labor to bring Hazen into the world. My blood pressure had risen slightly and my lab work didn't look right. We were told it was pre-ecclampsia, but I didn't have any swelling and my blood pressure was way below what a typical pre-ecclamptic woman experiences. They later found I had a kidney infection. Again, we were told it was a-typical and probably not a concern.
2 1/2 years later, we excitedly waited for Baby #3. As you know from reading this blog, things didn't go as planned. We lost Jairus at 35 weeks gestation. There had been no signs leading up to the abruption. Then he was gone.
Do you see a pattern here? I do, actually, it looks more like a downward slope. Each pregnancy started healthy, then something suddenly and unexpectedly went wrong. Each time it was earlier in the 3rd trimester, each time it was something more severe. When Jairus died, it was confessed to us by our doctor AND a couple of OB/GYN specialists (I'll get back to my relationship with them) that they did not know what was going on with my pregnancies, and because they didn't know, they couldn't help. If we wanted to try again, that would be our choice, but they would probably recommend intentionally delivering prematurely (around 33 weeks gestation) in the hopes of staying ahead of what ever might happen.
That's not much to go on.
You should also know I have a rare blood disorder. It's not had much of an effect on my life, other than being unable to take ibuprofen for pain. All studies had shown there was NO connection to difficult pregnancies for women with this condition after the 1st trimester, so I had been monitored by specialists as well as my own doctor through each of the 3 pregnancies, checking blood flow and getting extra ultrasounds. Nothing had ever risen concern.
In August I got a call from my doctor.
A recent study found women with my condition are having all kinds of problems with pregnancy, during all trimesters. Specifically mentioned in the study was a-typical pre-ecclampsia and placental abruptions leading to stillbirth. The study also found that 75% of women had healthy pregnancies after being on a regiment of an experimental medication before and during their pregnancies. As you can imagine, I pretty much threw up from shock.
That was August. It's January. We've not been able to get said medication due to problems with our insurance company not wanting to deal with a new prescription. So now we're learning all about how medical insurance works, how appeals are done and how many calls and emails it takes from our end to get anything moving. God is still trying to teach me patience and trust in His timing.
That's the beginning of a long answer to a short question. Do we want more children? We'd love to have more. Will we have more? I honestly don't know. I'm not at a place where I can say with any certainty what the future picture of our family is. There are many ways families grow and come into being. We're open to the Lord's leading. We're trying to wait. We recognize that what God's plans are for our family are in His hands. And that's where I want our family to stay. As hard as it is to not know, to not be able to plan for the future in this aspect, we are waiting for the Lord to guide us, to lead us, to teach us to love Him and rejoice in Him regardless of whether or not we ever have more children or not.
Our children are a treasure to us, one we desire to hold with open hands, not clenched fists. It has taken me a long time to be able to release my hopes and dreams for my future to the Lord. To know and feel in my depths that He is good and will do what is good. We have had the painful blessing of seeing Him working through even the death of Jairus, we know that God is for us, not against us. We want Him to be shown off as good. And His goodness is not dependent on the number of children He chooses to give us.
Tuesday, January 10, 2012
It's A Wonderful Life?!
Sunday, January 1st, my wonderful husband Mark had the opportunity to preach at our church about the journey our family has been on this past year. He shared Jairus's story and how we have been witness to God's Goodness, Faithfulness and Loving Comfort through the pain of losing our precious son. I hope you can take some time to listen or watch. Mark and I share our story not that we would receive any praise, but that God, who is Worthy, would be shown off in His Greatness!
May you know, when hardship comes (because it comes to us all, regardless of who/where/what we are), Jesus is there for you, there with you. He too suffered. He alone has brought healing to our souls. And His Daddy is the One who gave the life of His own precious Son for you. You are treasured beyond what you can know.
It's A Wonderful Life?
May you know, when hardship comes (because it comes to us all, regardless of who/where/what we are), Jesus is there for you, there with you. He too suffered. He alone has brought healing to our souls. And His Daddy is the One who gave the life of His own precious Son for you. You are treasured beyond what you can know.
It's A Wonderful Life?
The above link has an audio version (from one service) and video version (from a second service) of the sermon. Here's the video....
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