I've been thinking a lot about Advent this holiday season, and about how experiencing darkness and suffering best prepares you for the hope of Jesus coming. Don't get me wrong - I enjoy the festivity of the holiday season, including the "frivolous" stuff. I like driving around looking at Christmas lights, I like when the Christmas drinks appear on the Starbucks menu, I like blasting any Christmas song sung by Mariah Carey, I like a good white elephant Christmas exchange, and I like any excuse to eat excessive amounts of spinach artichoke dip.
But I think it's much more natural to feel sadness this time of year, with the days getting colder and darker. For people who have lost loved ones or who struggle with depression or who have just had a hard year, the holidays can be an especially tough time. Others are feeling despair because of the violence and injustice they see in the world. Others feel loneliness as they don't have dozens of parties to attend and presents to buy. For me, autumn is a reminder of the time of year when Joshua was born, and it often seems to bring new surgeries or worries or diagnoses - so for me personally, it always seems like a hard and sad time of year. All these parties and holly jolly music and everyone talking about how it's the most wonderful time of the year (and also the busiest!) can feel very far removed from your reality if you are struggling.
The good news is: sad feelings are kind of perfect for Advent. I think those who are feeling sadness this time of year have a much better vantage point from which to understand and appreciate and deeply long for a hope that comes from outside of this dark and broken world. As I struggle with some of Joshua's stuff, that is beyond what I can help with and beyond what doctors can fix, I feel the need for something outside of this world to come in and bring healing. I appreciate the hope that came into the world when Jesus was born, and I understand the urgency of the cry, "Come, Lord Jesus."
When everything is comfortable and good...when you don't feel the sadness in your own life or in the world at large...then it can be harder to remember the great hope we receive at Christmas. So if you're struggling this month, I hope this is an encouragement. One of the greatest Christmas hymns demonstrates the specific hope that comes to those who know their need (here is just one verse, but the whole song is really geared this way):
O Come, Thou Day-Spring, come and cheer
Our spirits by Thine advent here
Disperse the gloomy clouds of night
And death's dark shadows put to flight.
Rejoice! Rejoice! Emmanuel
Shall come to thee, O Israel.
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p.s. Here are a couple good recent articles on Advent:
Friday, December 19, 2014
Friday, December 12, 2014
Family Updates
Hello, everyone! This blog post is a mix of short family updates:
It takes a village
First, thanks for all the support since we received Joshua's new genetic diagnosis! It's such a blessing to know that people care, so thanks to all of you who have reached out. As we've started to read more about 4Q deletion syndrome, one theme that comes up over and over is how much of a difference early intervention makes. It's made me feel a wave of gratitude for the "village" of people who have helped us care for Joshua these first four years. Thank you to the doctors and nurses who gave him so much crucial medical care. Thank you to the therapists and teachers who have taught him so many important skills (and taught us how to help him). Thank you to extended family, church families, and friends for surrounding him (and us) with love. I'm very grateful to all of you!
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Joshua medical stuff
Josh got an echocardiogram and blood work done earlier this month, and all the tests came back normal, which is great! His transition off the feeding tube is also going very well. His favorite foods are peanut butter, cheese, yogurt, and fruit. He's gained a few pounds since he stopped using the tube this summer and he seems to be healthier than he's ever been (which might just be a coincidence, but in any case, it can't be a bad sign). He still has the G-button in place for now and the plan is to remove it in March, once we make it through cold & flu season. I'm glad the doctors have decided to take it slow with removal, because it's given us time to really feel confident that he can continue to gain weight and stay healthy without it.
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The start of our 4Q journey
We have been researching 4Q deletion syndrome, but there is not a lot of information out there, so our best source of information right now is the 4Q parents group on Facebook. There is also an organization called Unique that registers the families of children with rare chromosome conditions, and then uses this registry to connect families with others whose children have the same condition. We have registered with Unique and made contact with a few other families whose children have similar deletions. Interestingly, Joshua is the only (*registered*) person in the world with his exact deletion. Unique operates out of the UK and it looks like most families who are registered live in the eastern United States or western Europe, so it seems very possible that as more and more people get genetic tests and as more geneticists worldwide learn about Unique and encourage their patients to register, we will eventually learn of at least a couple people who are an exact match with Joshua. But for now, he is literally our precious snowflake. (This is my attempt to reclaim that phrase and use it for something positive rather than mockery.)
One of the 4Q brochures said that knowing an individual's chromosome make-up is helpful in explaining symptoms in an affected child, but not so helpful in predicting the effects on an individual. This has been true for us - we've definitely had lots of "aha" moments in the last month, as several things make more sense with this diagnosis, but so far it hasn't been super helpful in showing us exactly what Joshua's future will look like. We know that certain kinds of problems are much more prevalent in the 4Q population, so we will be periodically testing / watching like a hawk for those. And it seems like with almost every kind of problem, the earlier you catch it and start treating it, the better. So hopefully the diagnosis will be helpful to us in that way going forward.
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Joshua School Change
We moved to a new house in October, and since Joshua attends preschool through the public school system, he had to change schools in November. I was pretty resistant to this change because we were SO happy with his last school - his teacher was great, we could see him making progress all the time, and he had a good friend in his class. Fortunately, the transition to the new school seems to be going well. His new teacher is very nice and we are continuing to see him make progress. But mid-year transitions are always hard, so I would appreciate continued prayers for J to adjust to this new school and to make new friends.
------------------------------------------
Zoey Updates
Zoey doesn't get much word space on this blog because, fortunately, her health and development have been pretty typical, but today I'm giving her a virtual appearance. Zoey has a very lively, mostly happy but always intense personality. She is talking up a storm and is full of questions. One of her favorites is, "Where did mommy go, mommy?" She and Joshua are great buddies and playmates for each other. Zoey's hair is finally starting to grow longer, so if anyone wants to send tips on [SIMPLE] ways to style toddler girl hair, I would appreciate it! Right now I can get away with the Justin Bieber look (is that an outdated reference?), but we're going to need a better hair solution soon.
-----------
Family holiday plans
We will be staying in Virginia Beach through Christmas Eve, and then we will travel to Nebraska from December 25 - January 6. This is the first time we've spent most of December in Virginia rather than traveling back to Nebraska or Reno early, so it's nice to participate in some of the holiday festivities in our town of residence. We are very excited to see you, Nebraskans, and we will be thinking of you on Christmas, Nevadans!
It takes a village
First, thanks for all the support since we received Joshua's new genetic diagnosis! It's such a blessing to know that people care, so thanks to all of you who have reached out. As we've started to read more about 4Q deletion syndrome, one theme that comes up over and over is how much of a difference early intervention makes. It's made me feel a wave of gratitude for the "village" of people who have helped us care for Joshua these first four years. Thank you to the doctors and nurses who gave him so much crucial medical care. Thank you to the therapists and teachers who have taught him so many important skills (and taught us how to help him). Thank you to extended family, church families, and friends for surrounding him (and us) with love. I'm very grateful to all of you!
---------------------------------------------------------------------------------------------
Joshua medical stuff
Josh got an echocardiogram and blood work done earlier this month, and all the tests came back normal, which is great! His transition off the feeding tube is also going very well. His favorite foods are peanut butter, cheese, yogurt, and fruit. He's gained a few pounds since he stopped using the tube this summer and he seems to be healthier than he's ever been (which might just be a coincidence, but in any case, it can't be a bad sign). He still has the G-button in place for now and the plan is to remove it in March, once we make it through cold & flu season. I'm glad the doctors have decided to take it slow with removal, because it's given us time to really feel confident that he can continue to gain weight and stay healthy without it.
----------------------------------------------------------------------------------------------------
The start of our 4Q journey
We have been researching 4Q deletion syndrome, but there is not a lot of information out there, so our best source of information right now is the 4Q parents group on Facebook. There is also an organization called Unique that registers the families of children with rare chromosome conditions, and then uses this registry to connect families with others whose children have the same condition. We have registered with Unique and made contact with a few other families whose children have similar deletions. Interestingly, Joshua is the only (*registered*) person in the world with his exact deletion. Unique operates out of the UK and it looks like most families who are registered live in the eastern United States or western Europe, so it seems very possible that as more and more people get genetic tests and as more geneticists worldwide learn about Unique and encourage their patients to register, we will eventually learn of at least a couple people who are an exact match with Joshua. But for now, he is literally our precious snowflake. (This is my attempt to reclaim that phrase and use it for something positive rather than mockery.)
One of the 4Q brochures said that knowing an individual's chromosome make-up is helpful in explaining symptoms in an affected child, but not so helpful in predicting the effects on an individual. This has been true for us - we've definitely had lots of "aha" moments in the last month, as several things make more sense with this diagnosis, but so far it hasn't been super helpful in showing us exactly what Joshua's future will look like. We know that certain kinds of problems are much more prevalent in the 4Q population, so we will be periodically testing / watching like a hawk for those. And it seems like with almost every kind of problem, the earlier you catch it and start treating it, the better. So hopefully the diagnosis will be helpful to us in that way going forward.
-----------------------------------
Joshua School Change
We moved to a new house in October, and since Joshua attends preschool through the public school system, he had to change schools in November. I was pretty resistant to this change because we were SO happy with his last school - his teacher was great, we could see him making progress all the time, and he had a good friend in his class. Fortunately, the transition to the new school seems to be going well. His new teacher is very nice and we are continuing to see him make progress. But mid-year transitions are always hard, so I would appreciate continued prayers for J to adjust to this new school and to make new friends.
------------------------------------------
Zoey Updates
Zoey doesn't get much word space on this blog because, fortunately, her health and development have been pretty typical, but today I'm giving her a virtual appearance. Zoey has a very lively, mostly happy but always intense personality. She is talking up a storm and is full of questions. One of her favorites is, "Where did mommy go, mommy?" She and Joshua are great buddies and playmates for each other. Zoey's hair is finally starting to grow longer, so if anyone wants to send tips on [SIMPLE] ways to style toddler girl hair, I would appreciate it! Right now I can get away with the Justin Bieber look (is that an outdated reference?), but we're going to need a better hair solution soon.
-----------
Family holiday plans
We will be staying in Virginia Beach through Christmas Eve, and then we will travel to Nebraska from December 25 - January 6. This is the first time we've spent most of December in Virginia rather than traveling back to Nebraska or Reno early, so it's nice to participate in some of the holiday festivities in our town of residence. We are very excited to see you, Nebraskans, and we will be thinking of you on Christmas, Nevadans!
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