You know when life gets really busy, and you look back and realize that it's now been months since the last time you stopped to just reflect? That's been our life for the past few months! Our time has been occupied by really wonderful things- and yet it's so important to me to be able to step back and look at what God has done in that time. Maybe that's why people really like to write and receive Christmas letters... and if you've read my blog, you've stayed pretty up-to-date on our lives. So let's use that as the reason I didn't put one together, yet again. Ha!
In looking at the work God has done this year, the theme that seems to reoccur is that of belonging. I think that it's something that I've always struggled with; in high school I was broken from my insular existence and thrust in to a world where life wasn't fair, choices weren't as easy to make as they had previously been, and it was hard to see God in certain situations. College wasn't much easier... even though I had always pictured myself ending up at North Park, my experience there was so different from the one my parents described to me. I thought I saw people living that typical life... but I didn't fit into that mold. I was a student- athlete, I was living in my home city but living on campus, I had worked at camp for 2 years, I knew people from around the Covenant Church... and yet I didn't feel like I fit in anywhere!
Then moving here. By the time I had graduated from North Park, I recognized my identity as a Christ-follower as the only one that had any power over my life. When Brad and I moved to the suburbs, I began to live that out. Separated from my friends of 20+ years and my family, Brad and I had to trust we were following God's leading.
It's been the best decision we've ever made.
I have been transformed and renewed in my relationship with God. Our marriage is something completely different than what initially drew us together; it's become a partnership that fills me with gratitude and joy every day. Our son is surrounded by people who understand our walk & struggle, and want to be in the trenches with us... whether or not they're Christians!
So we've had this season of enjoying life with our families and friends... and yet there has been this nudge, a knock, a pound... it's been telling us that we are supposed to be stretching even further than we ever thought possible.
There's a song by Switchfoot called "Where I Belong" that has really made an impact on me this year. The artist is struggling with his place in this world, and how hard it is to exist here sometimes when our culture is pushing us into complacency, instead of revolution. Some day, I believe we are going to be in that place where we belong, where we aren't living in temporary bodies or crying about atrocious genocides or devastating hurricanes. I know that I am supposed to living out that hope and joy every. Single. Day. And it's becoming clear what that's going to look like. All signs have been directing way, and we'll let you know in the coming months what that means. In the meantime, please just give us your prayers that God would continue to guide us and mark us for His works, whatever our station may be.
Merry Christmas! We'll be taking a break on a cruise with Brad's family... Christmas by the pool? Yes please! We hope that you have time to reflect on the blessings in your life this past year, and enjoy time with whomever you spend the day with!
Monday, December 23, 2013
Monday, November 4, 2013
Thriving in times of peace
I've spent a lot of time reading and trying to be still lately, and I am so thankful for that gift. There are always distractions that threaten to break in on any sides, and the constant connectivity that is both a blessing and curse really drives that for me. It's taken quite a bit of discipline to not scroll through various feeds or read a blog that I've been meaning to catch up on... and yet I feel more content.
One of the things that I loved most about when Brady was first born were the mornings we would have when I was on maternity leave. Brad would be sleeping and Brady and I would greet the sun as it rose over the building where we lived. He would eat, I would have my coffee, he would snuggle... this little bundle that I didn't even really know a month before, and he trusted me more than anyone in the world.
We rested together.
Finding time with God is definitely harder than it used to be, and I suspect that it will only get harder, and yet I am reminded that I need to also have that rest with the One who has cared and provided for me more than anyone could.
The following are pictures from the Jr. High retreat that Brad and I went on with our church... a time of rest, even with 15 students!
One of the things that I loved most about when Brady was first born were the mornings we would have when I was on maternity leave. Brad would be sleeping and Brady and I would greet the sun as it rose over the building where we lived. He would eat, I would have my coffee, he would snuggle... this little bundle that I didn't even really know a month before, and he trusted me more than anyone in the world.
We rested together.
Finding time with God is definitely harder than it used to be, and I suspect that it will only get harder, and yet I am reminded that I need to also have that rest with the One who has cared and provided for me more than anyone could.
The following are pictures from the Jr. High retreat that Brad and I went on with our church... a time of rest, even with 15 students!
Sunday, September 15, 2013
Music
If you were to ask me about any of the pivotal moments in my life, I could probably name a song that was either playing in real life, or at least in my head. Maybe it was the fact that my mom is an insane vocal talent or that my dad played Christian reggae music absurdly early on Saturday mornings (none of my girlfriends wanted to sleep over for that reason... not that I blame them!), but music still remains a way that I feel most connected to my emotions.
It's pretty neat to watch Brady experience music now, with his brand new ears. He and my mom are in a music class together on Mondays, and he apparently loves it! You may have seen some of the movies that Brad and I have posted of him dancing; it's probably one of my favorite things ever. How wonderful that God has created music to be enjoyed and danced to and LOVED by even the littlest of his creation. Pretty great.
I went to a Stevie Wonder concert in Grant Park while I was in college, and and it was so incredible to see this horde of people singing, dancing... living... that music. There were people of so many races and economic classes that were sharing in this time together, and I think that might be what heaven is like. Except that the focus of all of that energy will be on praising the Creator instead of faux-worshipping the artist performing, and then we won't be just connecting to our emotions, but to the source of those emotions!
I've gone through a lot of different musical phases... boy bands, hip hop and r &b, soul, a BRIEF country phase, some singer/songwriter stuff, certain classical composers... and yet it's just been recently that I've made a conscious decision to listen to Christian music more often. Honestly, sometimes that's a battle. I appreciate artists like Jars of Clay and Gungor that sing about their human weakness and struggles, and how even though they don't always feel it, they know that God is faithfully acting in their lives. And they make beautiful music! I get a little frustrated with the lack of production value in some Christian music. Petty, I know.
All of this aside, I find that when I have music on that is either causing me to reflect on my relationship with God or my relationship with others as it stands as a Christ-follower, I am held further accountable; my language, my words, my thoughts... they are relevant to my ability to be a witness. I have to continue to throw those things off (Hebrews 12:1). I continue to be thankful for the things that the Lord puts in my life to help raise my awareness of His presence in my life, and I pray that I continue to use those things as they were meant to be used.
It's pretty neat to watch Brady experience music now, with his brand new ears. He and my mom are in a music class together on Mondays, and he apparently loves it! You may have seen some of the movies that Brad and I have posted of him dancing; it's probably one of my favorite things ever. How wonderful that God has created music to be enjoyed and danced to and LOVED by even the littlest of his creation. Pretty great.
We can't wait to see what ways God continues to show up and bring joy to Brady's life!
Wednesday, August 21, 2013
Resting Together
As summer winds down, Brad heads back to school, Brady heads back to daycare and my afternoons and evenings get a little shorter and seemingly more full of the things that warms nights make it easy to neglect. Our family just returned from a long week away from home; we went on a weekend retreat with our church family in Lake Geneva, followed by a week on Washington Island, WI. It was a perfect bookend to our summer that, upon reflection, has really been a Sabbath for our family.
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| Brady's first Fest, in Lake Geneva |
In studying more about Sabbath, and how it is used in scripture, it was a little funny to see how alike our need for activity was like that of the ancient Israelites. While wandering the desert, the Lord provided food for them every day, and yet they still felt the need to go out on the day He told them to rest, not gather food. He had said he'd take care of the 7th day, but there was still that drive to go and do it themselves (Exodus 16).
We're pretty similar, even as members of the Church. We are focusing on doing God's work- loving God, loving others; putting God's plan into action... and that isn't bad- it's what we're commissioned to do as believers! But it was so refreshing to rest with God's people this past week. To be together and let our guards down a bit. To step back and be thankful for provisions, for sunrises and lakes... for hummingbirds, legs that work and people that love our family. For campfires, silly kiddos and people who got Brady to take naps. These are just a fraction of the things that ran through my mind when I thought about the blessings that were made clear to me this week, and they instantly bring a sense of calm in any anxieties I might feel building in me about the coming school year. The difference being, we've connected and established real relationships with people that will walk along side us while doing God's work and also rest alongside us in reflection of His goodness.
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| Abby & Brady |
Washington Island has always been a special place for our family; my parents honeymooned here and we've come back almost every year that I can remember as a kid. After Brad made it past the family inspections, he started coming with us, and we got engaged there 3 years ago. This was Brady's second trip to the Island, but the last time was in the winter and there just isn't much that a 6 month old can do outside in Wisconsin in December. There is absolutely no schedule, no cell service and no rush. You can ride your bike most anywhere you need to go, and we're fortunate enough to be able to stay right on the water, so for my family, we don't go far! My sisters and parents joined us for the week, and it was great to spend time together over food, drinks and games. Now that we're all older, I love taking respite with them as well.
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| Brady's first bike ride |
This summer has been wonderful. We've seen friends and family get married & have children. We've had date nights and family nights. We've gone away to seek God's face and been fortunate to see His handprint in our daily life. Now that "real life" continues on, I am praying that we don't forget to take a Sabbath and recognize these same truths remain.
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| Abby & Kelsey on the Washington Island Ferry |
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| The lake was cold enough it could keep the wine chilled... |
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| ...but that didn't stop Brady from trying to get in! |
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| Splash time with Grandma! |
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| Grandpa & Brady |
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| Sink Baths are the best! |
Thursday, July 25, 2013
Living in Two Realities
Psalm 40: 1-5
I waited patiently for the Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and the mire;
he set my feet on a rock,
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the Lord.
Blessed is the man
who makes the Lord his trust;
who does not look to the proud,
to those who turn aside to false gods.
Many, O Lord my God,
are the wonders you have done
The things you planned for us
no one can recount to you;
were I to speak and tell of them,
they would be too many to declare.
I've always been pretty competitive, which I think is part of why this is such a challenge for me. I'm so thrilled to hear about my friends' 8-month old that's walking, but part of me is crushed, knowing that Brady won't be there for a while. Or when people tell me that it's good we started having kids early, because by the time our kid is ready to go to college, we'll still be young and want to have fun. Except that there's a pretty high likely hood that Brady won't go to a traditional college. Don't get me wrong- we WANT to know and celebrate with you and your little ones, so keep sharing! These are just the thoughts that run through my very human and imperfect mind.
And yet, God is always there, putting these reminders in my path that we are right where we're supposed to be, and we're there with the perfect kid for it. He is humbling my spirit, and slowly chipping away at my pride that was (and still is in many ways) based in things that this world values. I am ecstatic to find Brady pulling himself up on couches and tables and chairs instead of fretting that he might hurt himself. I don't care that he blows raspberries in my face when his mouth is full of some pureed gunk, because a) raspberries mean that he's using his mouth muscles to communicate something, ANYTHING, and b) he's eating and eating really well! When Brad calls me at work to give me therapy updates from that day, I feel so lucky to be so informed about how we can work with our child to help him develop to his full potential.
So, yes, our milestones are very different, and maybe if we have another child, I'll get to experience the other side of that coin. But I'm very happy to be living in this present time and seeing God's plan for us unfold.
- Meghan
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| Brady and I at Covenant Harbor last weekend! |
Saturday, July 13, 2013
Brady's 1!
So, about a month ago, we celebrated Brady's first birthday. What a day it was! We were surrounded by friends and family as we ran and walked the Gigi's Playhouse 5k & 1 Mile Walk. It was an incredible experience; there were so many people there who were walking along side of or in honor of, someone with Down Syndrome. While I have definitely been made more aware of people who have been touched by DS, I haven't been able to visualize it quite like I did that day.
The Brady Bunch raised over $2300. How incredible is that?! I am blown away by the way that God is working through Brady's life. My mom asked me tonight if I can believe this is my life... and honestly, if I stop and think about it, no, I can't. But I couldn't imagine my life being as good without Brady.
I appreciate every little thing. The fact that he's half-crawling now, after 7 months of PT. The fact that since we've been working with his speech therapist, he's now eating real food and making strong consonant sounds. The fact that he know what little phrases like, "hands up!", or "give me a kiss!" means. I get it. Every mom probably gets excited about these things, so I don't claim to be unique in that. But I just feel like we work so hard, and it makes these little victories seem so profound.
I am reminded about what it means to live as a disciple of Christ daily. There is an ability in our culture to live in a very self-centered way. Having Brady kind of takes that away immediately. Instead, I am aware of what it feels like to be marginalized, and forced to think outside of what I know. All the time, I am relying on those around me who have carried us and lived out the Word.
It got me out of my comfort zone. I miss the city every day. Having to drive everywhere isn't my favorite, and it's easy to go from garage to work to garage and not have relationships along the way. Thankfully, God didn't wire me that way, and He has put some of the most impactful people in our lives since we've moved to the 'burbs. I have been stretched, challenged and grown more than almost any time in my life. We moved because we were having a baby and I didn't want Brad to commute. We're staying because it turns out God was in control of that decision the whole time and this is exactly where we're called to be right now.
So, thank you for all of you who have prayed us through our first year. I would ask that you would pray for Sophia, a friend's baby who is in the NICU after being born 16 weeks early. We know all to well what that feels like, and I have faith that the same Healer who placed His hand on Brady can do the same for her.
Here are some pictures from Brady's birthday weekend... enjoy!
The Brady Bunch raised over $2300. How incredible is that?! I am blown away by the way that God is working through Brady's life. My mom asked me tonight if I can believe this is my life... and honestly, if I stop and think about it, no, I can't. But I couldn't imagine my life being as good without Brady.
I appreciate every little thing. The fact that he's half-crawling now, after 7 months of PT. The fact that since we've been working with his speech therapist, he's now eating real food and making strong consonant sounds. The fact that he know what little phrases like, "hands up!", or "give me a kiss!" means. I get it. Every mom probably gets excited about these things, so I don't claim to be unique in that. But I just feel like we work so hard, and it makes these little victories seem so profound.
I am reminded about what it means to live as a disciple of Christ daily. There is an ability in our culture to live in a very self-centered way. Having Brady kind of takes that away immediately. Instead, I am aware of what it feels like to be marginalized, and forced to think outside of what I know. All the time, I am relying on those around me who have carried us and lived out the Word.
It got me out of my comfort zone. I miss the city every day. Having to drive everywhere isn't my favorite, and it's easy to go from garage to work to garage and not have relationships along the way. Thankfully, God didn't wire me that way, and He has put some of the most impactful people in our lives since we've moved to the 'burbs. I have been stretched, challenged and grown more than almost any time in my life. We moved because we were having a baby and I didn't want Brad to commute. We're staying because it turns out God was in control of that decision the whole time and this is exactly where we're called to be right now.
So, thank you for all of you who have prayed us through our first year. I would ask that you would pray for Sophia, a friend's baby who is in the NICU after being born 16 weeks early. We know all to well what that feels like, and I have faith that the same Healer who placed His hand on Brady can do the same for her.
Here are some pictures from Brady's birthday weekend... enjoy!
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| The Brady Bunch! |
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| The baseball team Brad coaches came out to run |
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| Proud parents with a curious baby |
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| He didn't hate it! (I made his shirt. Super cute, but embroidery is not easy on the fingers!) |
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| All four of my grandparents (Brady's great grandparents) were able to come. What a blessing! |
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| I loved this cake from Lovin' Oven, a local cakery. It was delish too! |
Thursday, May 2, 2013
The Brady Bunch
This week we’ve been enjoying spring! Brady seems to really enjoy going for walks and loves looking around at what is going on around him. I just like being able to soak up some sun and get out of the house! Spring is so encouraging, as we see greenery pop up, the blue sky contrast with white clouds and let the warm breeze touch skin that has been hiding under layers of clothing for too long. Everything feels more alive, and it makes me feel that way as well.
About two and a half years ago, I was training for the Chicago Marathon with my dad when I injured myself playing church league softball and re-tore my ACL as well as tearing cartilage off the bone. I was devastated, knowing that I couldn’t run the marathon in October, but having been through this before I thought I’d be able to handle it. 9 months into my rehab, I started running again and felt a crack through my knee. My doctor told me that I’d never be able to run again, and that the only other option surgically was to shave my hip down to re-align my entire leg. Not wanting to have that surgery, I tried to wrap my head around this new reality. That was really the hardest time- giving up something that I loved to do because I couldn’t physically perform anymore. I felt like a huge part of what made me happy was gone, and I just felt sorry for myself. I tried different workouts, but none of them were as mentally and physically gratifying. After Brady was born, it was a struggle enough for me to feel like I needed to get my baby weight off, but to not be able to run it off was so much harder.
A few months ago I was on the elliptical when I just felt so good, I thought, let’s just run and see how it feels. Well, aside from being out of shape and a little stiff, it felt great! Now I run after work or on my lunch break in a forest preserve near my office; I feel as though I’ve reclaimed my time and have a calm that floods through the busy pace of a normal day...it’s so liberating!
Brady’s first birthday is coming up on June 10th. This year has sort of felt like my two years without running; it hasn’t been awful, but it hasn’t been the greatest either. We have been loved and blessed by a little boy, but sometimes it's hard to stay focused on the blessings in our life instead of the hard times that come with having expectations and schedules radically altered. Now that we’re past his surgery though, and we’re really settling into a life in our new home, I feel so free! I see such a difference in our happy little boy, and it’s incredibly encouraging.
We decided to run a 5k as a family the day before his birthday in support of GiGi’s Playhouse, a local Down syndrome awareness center. They offer free classes and a community for families who are impacted by Down syndrome- Brady’s first playgroup is on May 15th! We are so excited to get to know people who have walked this path ahead of us and to someday be in support of someone who might be in our same position. If you’d like to join us for the walk/run on June 9th, we'd love to have you! I’ve attached the link below- you can join The Brady Bunch (haha, corny, I know)! If you can’t make the run, would you considering donating any amount of money? GiGi’s Playhouse operates free of charge to families, which we really appreciate, given all of the extra costs Brady’s healthcare has incurred this year.
I’m really excited for this run- my favorite pastime and my favorite little man? There are few things on this earth that make me quite as happy!
Sunday, April 21, 2013
A New Normal
Two years ago, my life looked like this: wake up at 4:45 am, go for a 10-12 mile run with my dad, go to work, go shopping or run errands or just hang out with my girlfriends, head to dinner or a bar for a few hours, maybe play in my Thursday evening sand volleyball league or a Tuesday night softball league, and go to bed. Repeat. In most regards, this was pretty sweet. I was in the best shape ever, did what I wanted, spent my money on what I wanted and lived a carefree life.
Now, Brad and I wake up at 4:45 because that's when Brady gets up, juggle the responsibilities of getting both ourselves and Brady ready, get out the door, work, try to get in a quick 40 minute work out in (not so much running for me anymore, my knee won't allow that), make dinner, clean up the house, bathe Brady, get him to bed, and go to bed ourselves. Now add random doctor's appointments and medication dispenses and you have our life for the past few months. Not so glamorous.
It's been really hard to live in the suburbs; I don't have friends here that I can call to do little things like run to Target or grab coffee, and I struggle with what I need to do (or not do) for Brady's good... can I keep him out, even though it interferes with his nap schedule? Is it ok to bring him around other people now? Will he get sick again?
Today was the first day that I felt normal. I got up and ran a 5k with my dad in a suburb that was about halfway for both of us (and ran it pretty well!), went to church with Brad & Brady where I had a really wonderful conversation with another mom, came home and got some food ready for a function that got cancelled. The Meghan of a few months ago probably would have tried to get things done, played with Brady at home and waited for Brad to get home... and not-so-secretly resenting him for being gone coaching. But Brady was feeling great, the sun was shining, and I stopped feeling sorry for myself. We went to the park and on a really long walk and I just felt free.
I understand that there are going to be times when life once again seems too heavy to carry, when people tell us that our son isn't normal... but our perspectives of normal shift all the time, don't they? I am just glad that we have a healthy little 10 month old, a marriage that is being strengthened all the time and sunny days coming our way. Everything else is what you make of it, and I'm happy to try to make it the best.
I understand that there are going to be times when life once again seems too heavy to carry, when people tell us that our son isn't normal... but our perspectives of normal shift all the time, don't they? I am just glad that we have a healthy little 10 month old, a marriage that is being strengthened all the time and sunny days coming our way. Everything else is what you make of it, and I'm happy to try to make it the best.
Saturday, April 6, 2013
Living Through the Ordinary Times
It seems as though I haven't posted in forever... life goes by so quickly these days! After a successful post-op visit with Brady's cardiac surgery team, he has been cleared! No more visits with that group of doctors, and pending anything crazy, he should be able to just keep growing! It was such a relief to leave and not have the next thing waiting for us. I drove with Brady on northbound Lake Shore Drive at noon on Thursday, and there was such promise in the air. The sun was so bright, and all of the Chicagoans who have had to trudge through this oh-so-long winter were filling up the lakefront path. I said a prayer of thanks, and was content.
Entering back into the day to day of work, baseball practices, day care and life isn't something I'm dreading. I am aware of however, of how easily that routine breaks down the spiritual life that has been breaking through every crevice as we have walked this extraordinary road for the last 10 months. As I've said before, it's easy to rely on God when there isn't anything else to do. Yet, I find that my mindset, language, intent, my being, is being changed through this too...and I don't want to let that slip away.
I bought a book recently about enacting spiritual practices in my life ("Authentic: Developing the Disciplines of a Sincere Faith", by James MacDonald"), which is something that I don't actually have too much background in. When I was growing up, that wasn't something that was developed in me- at no ones fault, it just wasn't part of what was taught. At dinner with a friend last night, he said that a Catholic had shared with him (regarding the daily practices that may seem rote & without meaning to those outside the church) that they help carry you through the valleys and protect you from crashing on the peaks. I'm excited to have God teach, grow and restructure me to a faith that is steady and true.
We would love to hear your stories about developing your faith in the "normal" times... I've been so encouraged by the ways God's people have mobilized and shared through this whole ordeal, and I'd hate for it to stop now!
And please- if there are ways we can specifically pray for you, let us know.
Until next time!
Entering back into the day to day of work, baseball practices, day care and life isn't something I'm dreading. I am aware of however, of how easily that routine breaks down the spiritual life that has been breaking through every crevice as we have walked this extraordinary road for the last 10 months. As I've said before, it's easy to rely on God when there isn't anything else to do. Yet, I find that my mindset, language, intent, my being, is being changed through this too...and I don't want to let that slip away.
I bought a book recently about enacting spiritual practices in my life ("Authentic: Developing the Disciplines of a Sincere Faith", by James MacDonald"), which is something that I don't actually have too much background in. When I was growing up, that wasn't something that was developed in me- at no ones fault, it just wasn't part of what was taught. At dinner with a friend last night, he said that a Catholic had shared with him (regarding the daily practices that may seem rote & without meaning to those outside the church) that they help carry you through the valleys and protect you from crashing on the peaks. I'm excited to have God teach, grow and restructure me to a faith that is steady and true.
We would love to hear your stories about developing your faith in the "normal" times... I've been so encouraged by the ways God's people have mobilized and shared through this whole ordeal, and I'd hate for it to stop now!
And please- if there are ways we can specifically pray for you, let us know.
Until next time!
Tuesday, March 26, 2013
Quiet Love
“Now about your love for one another we do not need to write to you, for you yourselves have been taught by God to love each other. And yet, you do love all of God’s family throughout Macedonia. Yet we urge you, brothers and sisters, to do so more and more, and to make it your ambition to lead a quiet life: You should mind your own business and work with your hands, just as we told you, so that your daily life may win the respect of outsiders…” (1 Thessalonians 4:9-12a)
Since we have been such frequent occupants of room 1510 at Lurie Children’s Hospital these past few months, we’ve been able to form relationships with quite a few of the nurses on the Cardiac floor. It’s something that I’ve really enjoyed, because I tend to love getting to know people and I know that my day goes faster when I have someone to talk to! It’s also something of a discipline for me, as I know how easy it would be to just get wrapped up in a book or game on my iPad and just shut those people out. It definitely takes less work and energy, and I won’t lie- sometimes my brain just needs that mindless distraction. Yet, Paul’s encouragement to the Thessalonians as they press on in love is a good reminder to me in these times as well.
My parents and teachers through the years have done a wonderful job of teaching me what it means to love people, and how that is reflecting the true face of Christ. Having been on the receiving end of a whole lot of love recently, it’s been quite a lesson of how love isn’t the way that the world portrays it. Love doesn’t mean big, showy gestures, sometimes it just means a well-timed hug or word of encouragement, or a hot cup of coffee. Love means really inquiring into a person’s well-being, and being willing to listen while they are honest with you...and not inserting your opinion at the end of the conversation. Love is remembering those details later.
We have had the opportunity to get to know Brady’s caretakers pretty well; 12 hours in a row with a person is ample time to accomplish that if you’re willing. There were obvious moments when our faith was on display for these people (when our friends, family & clergy came to pray over Brady), and ways that we did so without realizing (a doctor told us that we were handling this situation with such grace, and our faith was evident through it all). Through out all of it, Paul’s words ring true. Our work as followers of Christ is to love and to do so without ceasing so that our model for love is reflected in everything we do. Every situation is an opportunity for impact, and all we have to do is keep our actions and hearts focused on our ability to love.
Brady will probably come home today-they have had some questions about his oxygen saturation while he sleeps, but they may just have us come back for a sleep study later, as it’s not a highly concerning matter. We’ll have 4 ½ weeks of pretty strict precautions, but it just is huge relief to be done... to not have the next thing on the horizon, a huge unknown looming ahead. Now, it’s hopefully just the normal parenting stresses, you know, adding speech and occupational therapy to his physical therapy. Sarcasm aside, we look forward to watching Brady’s growth as we go through his first spring and come up on his first birthday! It is just a blessing to feel so free, and we are going to soak it up as much as possible!
Since we have been such frequent occupants of room 1510 at Lurie Children’s Hospital these past few months, we’ve been able to form relationships with quite a few of the nurses on the Cardiac floor. It’s something that I’ve really enjoyed, because I tend to love getting to know people and I know that my day goes faster when I have someone to talk to! It’s also something of a discipline for me, as I know how easy it would be to just get wrapped up in a book or game on my iPad and just shut those people out. It definitely takes less work and energy, and I won’t lie- sometimes my brain just needs that mindless distraction. Yet, Paul’s encouragement to the Thessalonians as they press on in love is a good reminder to me in these times as well.
My parents and teachers through the years have done a wonderful job of teaching me what it means to love people, and how that is reflecting the true face of Christ. Having been on the receiving end of a whole lot of love recently, it’s been quite a lesson of how love isn’t the way that the world portrays it. Love doesn’t mean big, showy gestures, sometimes it just means a well-timed hug or word of encouragement, or a hot cup of coffee. Love means really inquiring into a person’s well-being, and being willing to listen while they are honest with you...and not inserting your opinion at the end of the conversation. Love is remembering those details later.
We have had the opportunity to get to know Brady’s caretakers pretty well; 12 hours in a row with a person is ample time to accomplish that if you’re willing. There were obvious moments when our faith was on display for these people (when our friends, family & clergy came to pray over Brady), and ways that we did so without realizing (a doctor told us that we were handling this situation with such grace, and our faith was evident through it all). Through out all of it, Paul’s words ring true. Our work as followers of Christ is to love and to do so without ceasing so that our model for love is reflected in everything we do. Every situation is an opportunity for impact, and all we have to do is keep our actions and hearts focused on our ability to love.
Brady will probably come home today-they have had some questions about his oxygen saturation while he sleeps, but they may just have us come back for a sleep study later, as it’s not a highly concerning matter. We’ll have 4 ½ weeks of pretty strict precautions, but it just is huge relief to be done... to not have the next thing on the horizon, a huge unknown looming ahead. Now, it’s hopefully just the normal parenting stresses, you know, adding speech and occupational therapy to his physical therapy. Sarcasm aside, we look forward to watching Brady’s growth as we go through his first spring and come up on his first birthday! It is just a blessing to feel so free, and we are going to soak it up as much as possible!
Friday, March 22, 2013
Out of the Woods
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| Brady yesterday afternoon, post-op. |
It's funny how worry sneaks up on us. I had been pretty calm the week heading into the surgery. We were able to focus on the daily task of living, instead of looking too far forward. Being a control freak, I think that's how I handle things sometimes; by focusing on the things I can control, I am able to keep my stress levels down. But the future... I can't control the future. Yet, what good does worrying do me?
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:25-33)
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| Brady this morning! Sleeping well! |
How true! God's faithfulness to our family has been evident in His caring for our needs! Physically, we have a room at the Ronald McDonald House- SO nice. It's a gorgeous facility with everything you could think of needing! Emotionally, you have all contacted us and prayed with us. Those messages are so encouraging! Spiritually, we have time to rest in God's grace and in the silence that sitting in hospital rooms provide. Financially, we have seen a tremendous outpouring of support from both of our places of work. Last week, I was completely humbled to receive notice that some of my co-workers wanted to donate their paid time off to our family. This would help provide for us during this time that I've spent off caring for Brady. Although we were trusting that God would take care of our financial situation, it was flooring to feel that need being taken on by friends (and even some strangers) who wanted to rally around us in our time of need. He has taken care of us- just not in ways we had expected! It really is incredible.
Brady's procedure went off without a hitch; he is doing really well! His numbers are all perfect, he came off the ventilator last night, and is breathing room air as we speak! He has been eating really well and will be coming off even more of the support today. There is a chance that we could go home as soon as Monday or Tuesday (although I'm not counting on it- I don't want to get my hopes up!), which seems like a quick jaunt compared to our last stay!
Once again, our fears have been allayed, and I wonder why I doubt that God can take care of anything at all. I suppose that's part of our imperfect humanity. If I am able to impart only one thing from this post, I hope that you feel the peace that we feel today, as we have felt the steadfast hand of God touch our lives and heal our little boy.
Again, thank you for your prayers and well wishes- they mean so much to us!
Wednesday, March 13, 2013
Peace
There are few things that start my day off better than having time to sit in the still of the morning with coffee. Just sitting in the quiet, watching life come into the day through the sun rising and birds stirring… it really fills me with a sense of peace.
This week has been like a whole week of those mornings strung up back to back. Even though our lives are back into the crazy hustle that once overwhelmed me, I am amazed at the way that God sustains us and gives us peace when we need it. After having spent nearly three weeks of abnormality and being in a somewhat anxious state, it is incredible what it feels like to let it go.
We’ve learned over the past year that as Jesus told his followers in the Sermon on the Mount that worry is fruitless (Matthew 6:25-33). We have seen providence in our life time and time again, so why would we worry that tomorrow would be any different? Even saying that out loud takes a huge weight off my shoulders. It is so freeing to realize that if God carries us through the hard times that He will do the same during the normal ones as well! I laugh at myself when I see how little my mind is willing to accept, and then when God’s nature is revealed that I doubt that it could be true. All that to say, that when one can accept this truth, there is a joy that is carries into all arenas of life, into every crevice of the darkest days.
Letting go of worry through the expectation of God’s faithfulness has been the source of peace in my life this week, and I am so thankful for that experience! We head into Brady’s surgery next week with that peace, and although I don’t relish seeing my little boy uncomfortable and in the hospital again, we know that God’s will is being done through this. I pray that whatever things you may be holding on to that you can’t yet let God carry for you may be released soon. If there are ways that our family can come along side you through prayer, please let us know- so many of you have been a source of comfort to us, and we’d love to provide the same to you.
p.s.: In case you were wondering, Brady loves our new home. Well, I don’t know that he knows that it’s a new home, but he loves the space to roll around again & having all of his toys and books back! He’s almost back to eating & sleeping normally (just in time to have it all screwed up again), and it’s wonderful to see him happy and healthy!
This week has been like a whole week of those mornings strung up back to back. Even though our lives are back into the crazy hustle that once overwhelmed me, I am amazed at the way that God sustains us and gives us peace when we need it. After having spent nearly three weeks of abnormality and being in a somewhat anxious state, it is incredible what it feels like to let it go.
We’ve learned over the past year that as Jesus told his followers in the Sermon on the Mount that worry is fruitless (Matthew 6:25-33). We have seen providence in our life time and time again, so why would we worry that tomorrow would be any different? Even saying that out loud takes a huge weight off my shoulders. It is so freeing to realize that if God carries us through the hard times that He will do the same during the normal ones as well! I laugh at myself when I see how little my mind is willing to accept, and then when God’s nature is revealed that I doubt that it could be true. All that to say, that when one can accept this truth, there is a joy that is carries into all arenas of life, into every crevice of the darkest days.
Letting go of worry through the expectation of God’s faithfulness has been the source of peace in my life this week, and I am so thankful for that experience! We head into Brady’s surgery next week with that peace, and although I don’t relish seeing my little boy uncomfortable and in the hospital again, we know that God’s will is being done through this. I pray that whatever things you may be holding on to that you can’t yet let God carry for you may be released soon. If there are ways that our family can come along side you through prayer, please let us know- so many of you have been a source of comfort to us, and we’d love to provide the same to you.
p.s.: In case you were wondering, Brady loves our new home. Well, I don’t know that he knows that it’s a new home, but he loves the space to roll around again & having all of his toys and books back! He’s almost back to eating & sleeping normally (just in time to have it all screwed up again), and it’s wonderful to see him happy and healthy!
Tuesday, March 5, 2013
Brady Update, Day 15
Welcome to week three, ladies and gentlemen!
We are praising God today that Brady is his boisterous, happy self! He is so engaging with everyone around him... So much so that multiple female caregivers have claimed him as their boyfriend! What a flirt!
We are waiting for Brady to respond well to coming off his oxygen. Right now he is on 1/2 a liter of oxygen, and every time they try to wean him down off of it (there isn't a smaller increment they can decrease to first) his blood-oxygen level goes down to about 88-89. We need to be at 92 consistently. Hopefully that will just come with time, and we can go home soon.
The rooms that we were staying in at the hospital are kept for short-stay situations, and so Saturday night was our last night at the hospital. I am now staying at my parent's house, which is a 15 minute drive, and Brad is going back and forth from his school & our home. It was hard to leave Brady that first night, but it's just so much better to be somewhere where it's not so sterile and cold, and where we don't have to eat take out.
Please pray for energy for Brad, as he is working, coaching and getting in to see Brady. Please pray for sanity for me, because I am just not used to being un-scheduled for so long! I am definitely learning what it means to listen for what God is saying, because I don't have anything else to do! Obviously not the best way to come around to that lifestyle, but God has a funny way of teaching us in every situation, if we are willing.
You all should know that we have been blessed by your prayers, words and gestures. I know that my previous post could have been misleading, but it was meant to show the providence of God in our situation. So please don't worry about us, just keep praying! We are reminded daily about how great our God is, and He remains the calm in our little storm.
We are praising God today that Brady is his boisterous, happy self! He is so engaging with everyone around him... So much so that multiple female caregivers have claimed him as their boyfriend! What a flirt!
We are waiting for Brady to respond well to coming off his oxygen. Right now he is on 1/2 a liter of oxygen, and every time they try to wean him down off of it (there isn't a smaller increment they can decrease to first) his blood-oxygen level goes down to about 88-89. We need to be at 92 consistently. Hopefully that will just come with time, and we can go home soon.
The rooms that we were staying in at the hospital are kept for short-stay situations, and so Saturday night was our last night at the hospital. I am now staying at my parent's house, which is a 15 minute drive, and Brad is going back and forth from his school & our home. It was hard to leave Brady that first night, but it's just so much better to be somewhere where it's not so sterile and cold, and where we don't have to eat take out.
Please pray for energy for Brad, as he is working, coaching and getting in to see Brady. Please pray for sanity for me, because I am just not used to being un-scheduled for so long! I am definitely learning what it means to listen for what God is saying, because I don't have anything else to do! Obviously not the best way to come around to that lifestyle, but God has a funny way of teaching us in every situation, if we are willing.
You all should know that we have been blessed by your prayers, words and gestures. I know that my previous post could have been misleading, but it was meant to show the providence of God in our situation. So please don't worry about us, just keep praying! We are reminded daily about how great our God is, and He remains the calm in our little storm.
Sunday, March 3, 2013
Brady Update, Day 14
Good morning all!
The last few days have been full of highs and lows for us. Brady is taking all of his medication orally, which means he isn't hooked up to any IVs. This is much more conducive to playing, which is he ALL about! Yesterday, he didn't take a nap all day because he just wanted to be up and playing!
Brad got to spend the day with Brady and his family, and I went to our new townhouse to see it for the first time and do some organizing... I wasn't aware of how many t-shirts Brad had! I may have remedied that situation...
While it was nice to be out of the hospital, it made me keenly aware of how much I just want to get back to normal life. It's been great to be in this culinary mecca for a bit, but I can't wait to cook meals and clean... weird what you end up missing. We had been told early this week that we'd be released Sunday or Monday, but Brady still has a sizable amount of congestion and was put back on oxygen (just through his nose, no tube or anything). The doctors said that this isn't uncommon that babies need support like this for quite a while when they were as sick as Brady was, and so now they think that our return home will be closer to the end of this upcoming week.
I won't lie- it was disheartening to hear that, especially after thinking we just had to get through a few days. It's also a struggle to realize that I'll be missing 3 weeks of work if we get through this one. While everyone there is totally supportive and taking care of my responsibilities, it's scary for me to think about missing those pay checks. We are so thankful that Brad has been taking on extra coaching that will allow for extra income. It's funny that even when things like this happen, life still keeps going.
Through all of this, God is faithful. He has helped lift Brady's discomfort and brought us our spirited little guy back. He has given us sunny days (like today!) that boost our energy and spirits. He has placed us in a city where our support system is huge, and helping us in every realm possible. Reflecting on these graces has given me peace in the times where I question our situation, and I am thankful for this most of all.
Blessings on all of you today, and we pray that God reaches you where you are today, even in a small way.
The last few days have been full of highs and lows for us. Brady is taking all of his medication orally, which means he isn't hooked up to any IVs. This is much more conducive to playing, which is he ALL about! Yesterday, he didn't take a nap all day because he just wanted to be up and playing!
Brad got to spend the day with Brady and his family, and I went to our new townhouse to see it for the first time and do some organizing... I wasn't aware of how many t-shirts Brad had! I may have remedied that situation...
While it was nice to be out of the hospital, it made me keenly aware of how much I just want to get back to normal life. It's been great to be in this culinary mecca for a bit, but I can't wait to cook meals and clean... weird what you end up missing. We had been told early this week that we'd be released Sunday or Monday, but Brady still has a sizable amount of congestion and was put back on oxygen (just through his nose, no tube or anything). The doctors said that this isn't uncommon that babies need support like this for quite a while when they were as sick as Brady was, and so now they think that our return home will be closer to the end of this upcoming week.
I won't lie- it was disheartening to hear that, especially after thinking we just had to get through a few days. It's also a struggle to realize that I'll be missing 3 weeks of work if we get through this one. While everyone there is totally supportive and taking care of my responsibilities, it's scary for me to think about missing those pay checks. We are so thankful that Brad has been taking on extra coaching that will allow for extra income. It's funny that even when things like this happen, life still keeps going.
Through all of this, God is faithful. He has helped lift Brady's discomfort and brought us our spirited little guy back. He has given us sunny days (like today!) that boost our energy and spirits. He has placed us in a city where our support system is huge, and helping us in every realm possible. Reflecting on these graces has given me peace in the times where I question our situation, and I am thankful for this most of all.
Blessings on all of you today, and we pray that God reaches you where you are today, even in a small way.
Friday, March 1, 2013
Brady Update, Days 1,000 and 1,001
Ok, the title might not be accurate, but that's how long this stay feels. I'm sorry for not updating, I got food poisoning, or a bug or SOMETHING and was sick yesterday.
Yesterday was hard. Brady has been off his sedation and so as a result he is more awake. That meant crabby. But thankfully, we had a nurse that we had our first 3 days here, and I felt a little better sneaking off to take a nap here or there. Today was awesome. Brady was almost back to his old self, laughing, trying to talk, sitting up and smiling constantly. It was SO GOOD to see that again. I know it was good for Brad too, because that's been hard for our family to be apart this week.
We were told today we may get discharged Monday. Pray that Brady is healed and ready to get out of here, pray that we learn how to give his new meds correctly. Pray for the gunk in his lungs that never seems to dissipate. Pray for optimism in a situation that seems enesa.
I'm sorry this is so brief... We are so glad to have Brad back with us, and pretty tired of being here, but thankful for warm beds and good food, great care for our little man and for prayer warriors all over the world. We love you.
Yesterday was hard. Brady has been off his sedation and so as a result he is more awake. That meant crabby. But thankfully, we had a nurse that we had our first 3 days here, and I felt a little better sneaking off to take a nap here or there. Today was awesome. Brady was almost back to his old self, laughing, trying to talk, sitting up and smiling constantly. It was SO GOOD to see that again. I know it was good for Brad too, because that's been hard for our family to be apart this week.
We were told today we may get discharged Monday. Pray that Brady is healed and ready to get out of here, pray that we learn how to give his new meds correctly. Pray for the gunk in his lungs that never seems to dissipate. Pray for optimism in a situation that seems enesa.
I'm sorry this is so brief... We are so glad to have Brad back with us, and pretty tired of being here, but thankful for warm beds and good food, great care for our little man and for prayer warriors all over the world. We love you.
Tuesday, February 26, 2013
Brady Update, Day 9
So, yesterday was tough. We had been told he'd get off the vent, and that didn't happen. We were left with one non-sedated, pissed off little baby. I was so thankful that Brad's parents came in for a little while so that I could get a rest from patting Brady's chest and singing to him. Brad went back to work this week, so there were times where I really was reaching out to anyone around us for personal interaction, and as a result have been able to connect with the families in our sleep room suite. Most of them have children in the Cardiac Care Unit as well, and it's nice to pray for someone else's baby, knowing that we have so many praying for us.
This morning, I woke up, determined to just get this day done, and not have a bad attitude about it, no matter the outcome. After the doctors did their rounds (I swear, Brady was the last kid they came to today!) they decided to take his breathing tube out! It was great to see his little face, and he calmed down immediately after being freed of that thing.
The doctors monitored him closely, and although his blood test showed that he was properly oxygenating his blood on his own, he looked a little labored, and they put a mask over his nose and mouth to help his breathing. This wasn't as invasive, and with the help of a little sedative, he seemed to tolerate it well. I was a little crestfallen, however, as I had hoped to be able to just hold my little man again.
My folks had come in, so my mom sang to Brady while my dad held his hand, and they got him off to sleep... Again, I wish I had inherited my mother's singing abilities! They come in handy once again!
Now, the best news of tonight. When the doctors came through on their nightly checks, the attending physician a)thought I was a nurse b) asked my opinion on if I thought that he still needed this much breathing support. I had no idea he thought I was a nurse, all I knew was that Brady was not settling down with the face mask, so I told him so. So, he said, "ok, get respiratory in here and let's take this mask off." I then told him I wasn't a nurse, just mom. He faltered a little bit, then said, "Well, what you said is still true. How about I get respiratory in here and we'll take off this mask?"
An hour later, his tests came back that he was in good shape, and we were free and clear of the breathing devices! The real nurse and I gave him a little sponge bath and tucked him into bed, and for the first night that I can remember, Brady fell asleep on his own, thumb in mouth and blanket in hand.
Your encouragement today came at all the right times. Thank you.
God has put such joy in my heart today, and has blown me away by the witness that Brady is to His glory. That little boy has touched so many people, not because he's this baby prodigy, but because of the love he evokes from those he encounters. People I haven't spoken to in years are praying for this little one. The kingdom of God is one that is connected and real. It prays together, serves together and lives selflessly together. I have heard stories of people I don't know fasting for Brady's health, waking up in the middle of the night to pray for us. Painting walls. Lifting up our families. Gifting our nursing staff. And while the focus of the prayer is on Brady's health, it is Christ who is reflected in all of this. If Brady can help show Christ in those he touches, I am so thankful to be his mother. I expect that he is going to keep reminding me into my old age about who we are to model, and at times, put me to shame. Our culture makes it easy to be selfish, materialistic, lazy & complacent. But being Brady's mom hasn't, so far. I can't be selfish when I look at the moms and dads in our sleep room suite who have a much harder situation than us, and still have a positive attitude. I can't be materialistic when I step back and see that everything I need is provided for by the Hand of God. Nor can I be lazy or complacent when I know that people are being so diligent on Brady's behalf- I can be fighting for him too!
So thank you all for reflecting that to Brad and I, whether you mean it or not. It's just the affect that Brady had on people.
This morning, I woke up, determined to just get this day done, and not have a bad attitude about it, no matter the outcome. After the doctors did their rounds (I swear, Brady was the last kid they came to today!) they decided to take his breathing tube out! It was great to see his little face, and he calmed down immediately after being freed of that thing.
The doctors monitored him closely, and although his blood test showed that he was properly oxygenating his blood on his own, he looked a little labored, and they put a mask over his nose and mouth to help his breathing. This wasn't as invasive, and with the help of a little sedative, he seemed to tolerate it well. I was a little crestfallen, however, as I had hoped to be able to just hold my little man again.
My folks had come in, so my mom sang to Brady while my dad held his hand, and they got him off to sleep... Again, I wish I had inherited my mother's singing abilities! They come in handy once again!
Now, the best news of tonight. When the doctors came through on their nightly checks, the attending physician a)thought I was a nurse b) asked my opinion on if I thought that he still needed this much breathing support. I had no idea he thought I was a nurse, all I knew was that Brady was not settling down with the face mask, so I told him so. So, he said, "ok, get respiratory in here and let's take this mask off." I then told him I wasn't a nurse, just mom. He faltered a little bit, then said, "Well, what you said is still true. How about I get respiratory in here and we'll take off this mask?"
An hour later, his tests came back that he was in good shape, and we were free and clear of the breathing devices! The real nurse and I gave him a little sponge bath and tucked him into bed, and for the first night that I can remember, Brady fell asleep on his own, thumb in mouth and blanket in hand.
Your encouragement today came at all the right times. Thank you.
God has put such joy in my heart today, and has blown me away by the witness that Brady is to His glory. That little boy has touched so many people, not because he's this baby prodigy, but because of the love he evokes from those he encounters. People I haven't spoken to in years are praying for this little one. The kingdom of God is one that is connected and real. It prays together, serves together and lives selflessly together. I have heard stories of people I don't know fasting for Brady's health, waking up in the middle of the night to pray for us. Painting walls. Lifting up our families. Gifting our nursing staff. And while the focus of the prayer is on Brady's health, it is Christ who is reflected in all of this. If Brady can help show Christ in those he touches, I am so thankful to be his mother. I expect that he is going to keep reminding me into my old age about who we are to model, and at times, put me to shame. Our culture makes it easy to be selfish, materialistic, lazy & complacent. But being Brady's mom hasn't, so far. I can't be selfish when I look at the moms and dads in our sleep room suite who have a much harder situation than us, and still have a positive attitude. I can't be materialistic when I step back and see that everything I need is provided for by the Hand of God. Nor can I be lazy or complacent when I know that people are being so diligent on Brady's behalf- I can be fighting for him too!
So thank you all for reflecting that to Brad and I, whether you mean it or not. It's just the affect that Brady had on people.
Sunday, February 24, 2013
Brady Update, Day 7
Well, it's been a week- thank you all so much for continuing to pray for our family!
Brady's stats are awesome today, he came down or off quite a few meds today. They are expecting him to come off his ventilator tomorrow- yay!
Part of the process of him coming off his vent is weaning him off all sedation. Right now, he is at about 1/4 of what he was on at the peak of his treatment. This basically means that he is awake for most of the day. While it's so good to see him up and looking at us, it is really hard to see him so upset that he has this tube down his throat. He can't make any sounds, and he just tries to get it out all the time, so he has arm immobilizers on both to try and prevent him from ripping his tubing and lines out.
Since he felt everything today, he had a hard time sleeping. He could only be pacified with someone patting his chest and stroking the hairs on his head... poor little man. After about 30 minutes of work, he'd fall asleep for 45 minutes or so, or until he jerked himself into a position where the breathing tube wouldn't follow. At one point, Brad's mom, his nurse and I all worked sequentially for about 4 hours to get him to nap. Whew! Right now we've barricaded his door, so any non-imperative checkins from his medical staff can't interrupt this much-needed rest.
After the tube comes out, it should only be a few more days here! As wonderful as this facility is (they really have thought of everything), Brad and I can't wait to have our little boy back to being his giggly little self.
You don't know how much you're helping just by giving us feedback to these posts. It's easy to feel isolated here, or that this is something we are struggling with alone, but any time I start to feel that way, I get a Facebook alert that someone commented on a post, or an email with a kind word. It all helps.
Pray for Brady tonight, and that he's able to get some good sleep, and that Brady and I would too...
Gotta go, he's up!
Brady's stats are awesome today, he came down or off quite a few meds today. They are expecting him to come off his ventilator tomorrow- yay!
Part of the process of him coming off his vent is weaning him off all sedation. Right now, he is at about 1/4 of what he was on at the peak of his treatment. This basically means that he is awake for most of the day. While it's so good to see him up and looking at us, it is really hard to see him so upset that he has this tube down his throat. He can't make any sounds, and he just tries to get it out all the time, so he has arm immobilizers on both to try and prevent him from ripping his tubing and lines out.
Since he felt everything today, he had a hard time sleeping. He could only be pacified with someone patting his chest and stroking the hairs on his head... poor little man. After about 30 minutes of work, he'd fall asleep for 45 minutes or so, or until he jerked himself into a position where the breathing tube wouldn't follow. At one point, Brad's mom, his nurse and I all worked sequentially for about 4 hours to get him to nap. Whew! Right now we've barricaded his door, so any non-imperative checkins from his medical staff can't interrupt this much-needed rest.
After the tube comes out, it should only be a few more days here! As wonderful as this facility is (they really have thought of everything), Brad and I can't wait to have our little boy back to being his giggly little self.
You don't know how much you're helping just by giving us feedback to these posts. It's easy to feel isolated here, or that this is something we are struggling with alone, but any time I start to feel that way, I get a Facebook alert that someone commented on a post, or an email with a kind word. It all helps.
Pray for Brady tonight, and that he's able to get some good sleep, and that Brady and I would too...
Gotta go, he's up!
Saturday, February 23, 2013
Brady Update, Day 6
Good morning!
Sorry for not writing yesterday, but there wasn't much to report.
Brady has held stable, and continues to show better numbers by the hour. He is getting all of his sustenance from food now, with extra IV fluid not being necessary. His blood clot has dissolved! Praise God! They have taken him off even more sedation, so he was awake when we came up to see him this morning! It was so great to see his little eyes. I didn't know that I would miss rocking him to sleep or being able to feel his hefty weight in my arms... The things we take for granted.
While being here, we've been able to meet some great nurses (this staff is incredible. We've yet to meet anyone we haven't liked. Even someone my father-in law hasn't liked... Miracles keep happening :) ) and it is a great example of how God is the author of all life. He is reflected in every person you and I meet. Everyone has gifts that they've been given, and when they are being used in the fullest, it's like getting a little glimpse of God that we aren't used to seeing. Since neither Brad or I have been gifted medically, it's just been wonderful to see how God is using his children in every walk.
We have so much to be thankful for today.... And they're saying he may come off the ventilator Monday! Our prayer requests are that Brady feels safe and doesn't freak out too much about the tube down his throat. Pray for strength for us as Brad goes back to work next week and we are going to be spending time with Brady 24/7 so that when he wakes up we're there to comfort him. Continue to pray for the recession of the virus. And give thanks to God that Brady is getting the best care possible.
I hope that you all are able to encounter someone with different gifts than you, and that when you do, you're able to see a side of your Creator you wouldn't have been exposed to otherwise.
Psalm 48:9-10
9 Within your temple, O God,
we meditate on your unfailing love.
10 Like your name, O God,
your praise reaches to the ends of the earth;
your right hand is filled with righteousness.
Sorry for not writing yesterday, but there wasn't much to report.
Brady has held stable, and continues to show better numbers by the hour. He is getting all of his sustenance from food now, with extra IV fluid not being necessary. His blood clot has dissolved! Praise God! They have taken him off even more sedation, so he was awake when we came up to see him this morning! It was so great to see his little eyes. I didn't know that I would miss rocking him to sleep or being able to feel his hefty weight in my arms... The things we take for granted.
While being here, we've been able to meet some great nurses (this staff is incredible. We've yet to meet anyone we haven't liked. Even someone my father-in law hasn't liked... Miracles keep happening :) ) and it is a great example of how God is the author of all life. He is reflected in every person you and I meet. Everyone has gifts that they've been given, and when they are being used in the fullest, it's like getting a little glimpse of God that we aren't used to seeing. Since neither Brad or I have been gifted medically, it's just been wonderful to see how God is using his children in every walk.
We have so much to be thankful for today.... And they're saying he may come off the ventilator Monday! Our prayer requests are that Brady feels safe and doesn't freak out too much about the tube down his throat. Pray for strength for us as Brad goes back to work next week and we are going to be spending time with Brady 24/7 so that when he wakes up we're there to comfort him. Continue to pray for the recession of the virus. And give thanks to God that Brady is getting the best care possible.
I hope that you all are able to encounter someone with different gifts than you, and that when you do, you're able to see a side of your Creator you wouldn't have been exposed to otherwise.
Psalm 48:9-10
9 Within your temple, O God,
we meditate on your unfailing love.
10 Like your name, O God,
your praise reaches to the ends of the earth;
your right hand is filled with righteousness.
Thursday, February 21, 2013
Brady Update, Day 4
Not much new to report:
Brady held stable all night and runs a fever now and again, which is to be expected as his body is fighting the viruses. He was kept off the paralytic and is responsive to touch and loud sounds...it's nice to see some sign of life in him.
After a tumultuous trip home from Arizona, Brad's parents made it home and were able to see Brady. They said it made them feel better to see that he doesn't really look sick (aside from the cords he's hooked up to), so hopefully that report puts some of you at home at ease a bit.
I know that they don't want this attention, but our families and a wonderful friend from church really did us a solid today and helped us by moving us out of our apartment and into a town home, as our lease is scheduled to end next week and we were in no position to do any of that. Our home church has put a group together to re-paint our old apartment back to what it was. I am floored and so thankful. Again, God's people working in our lives. Amazing.
Today we were blessed to have a chance to walk and grab a cup of coffee (something I dearly miss about city life). I felt almost normal again, except that all Brad and I could talk about was how excited we were to get our smiling, goofy baby back so we could show him the city too. It's funny how much changes in a year. Even with everything that has happened, I wouldn't change a single thing. Obviously I wish my child wasn't ill or that he didn't have this heart defect that affects every thing he does, but I am so thankful that God has kept our eyes and hearts open to His purpose in all of this. We were created to do His work, and these long days in hospital rooms create new relationships, a time of peace and communication for Brad and I, and time to dwell in God's presence without the world knocking at my door with something I should be doing instead. Because while we are here, we just have to BE. I'm learning to love that.
Brady held stable all night and runs a fever now and again, which is to be expected as his body is fighting the viruses. He was kept off the paralytic and is responsive to touch and loud sounds...it's nice to see some sign of life in him.
After a tumultuous trip home from Arizona, Brad's parents made it home and were able to see Brady. They said it made them feel better to see that he doesn't really look sick (aside from the cords he's hooked up to), so hopefully that report puts some of you at home at ease a bit.
I know that they don't want this attention, but our families and a wonderful friend from church really did us a solid today and helped us by moving us out of our apartment and into a town home, as our lease is scheduled to end next week and we were in no position to do any of that. Our home church has put a group together to re-paint our old apartment back to what it was. I am floored and so thankful. Again, God's people working in our lives. Amazing.
Today we were blessed to have a chance to walk and grab a cup of coffee (something I dearly miss about city life). I felt almost normal again, except that all Brad and I could talk about was how excited we were to get our smiling, goofy baby back so we could show him the city too. It's funny how much changes in a year. Even with everything that has happened, I wouldn't change a single thing. Obviously I wish my child wasn't ill or that he didn't have this heart defect that affects every thing he does, but I am so thankful that God has kept our eyes and hearts open to His purpose in all of this. We were created to do His work, and these long days in hospital rooms create new relationships, a time of peace and communication for Brad and I, and time to dwell in God's presence without the world knocking at my door with something I should be doing instead. Because while we are here, we just have to BE. I'm learning to love that.
Psalm 40:1-5
I waited patiently for The Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him.
Blessed is the one
who trusts in the Lord,
who does not look proud,
to those who turn aside to false gods.
Many, Lord my God,
are the wonders you have for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him.
Blessed is the one
who trusts in the Lord,
who does not look proud,
to those who turn aside to false gods.
Many, Lord my God,
are the wonders you have for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.
Wednesday, February 20, 2013
Brady Update, Day 3
First of all, Brad and I want to express our thanks to all of our friends, family and those of you that we've never met who are walking along with us on this journey. We have been overwhelmed and humbled by the huge outpouring of prayer over Brady's health, our physical and emotional needs, and probably lots of things I have no clue about. This is what Christ's body looks like, mobilized and taking action. This is the type of faith that I am so thrilled for Brady to see modeled in those people who have been so touched by his story already- and he's not even 9 months old. So, with tears in my eyes, I thank you.
On to today's news:
Brady developed a blod clot in his IVC (The inferior vena cava (or IVC), also known as the posterior vena cava, is the large vein that carries de-oxygenated blood from the lower half of the body into the right atrium of the heart.- thank you Wikipedia!) late last night, so they performed an ultrasound to find out for sure.
His A-Line went bad last night (it wasn't able to draw labs any more) and because of his Down Syndrome, he has extra small arteries and it's hard for them to re-insert them. They performed a small procedure where the opened up his left wrist and inserted the line with the artery visible. This means they now have a clear reading of his blood pressure and other vital signs.
He's tested negative for any bacterial infection for the last 48 hours (Praise God!) which rules out things like pneumonia, so they took him off antibiotics.
Because he held stable for the last 24 hours under the current routine, they took him off the paralytic medication, added an anti-coagulant (for the blod clot) and have started giving him formula through an NG tube in addition to IV fluids.
So as parents, the fun is now just starting. Brady is starting to respond to touch and sound (apparently he's still ticklish when sedated! ), although because he's still on a breathing tube they are going to keep him pretty sedated until that comes out, so they don't aggravate his pulmonary hypertension.
Many of you have expressed admiration for how we're doing right now, and don't think we don't appreciate it. But like I was telling my dad earlier tonight, it's pretty easy to trust God with the stuff that you don't think you can have control over. It's the little things like getting a house moved, or figuring out what dinner's going to be, or what to wear when you leave the room in the morning that are harder to recognize God's providence in. For Brad and I, learning how to trust that God's will is being done in every aspect of our lives is a much harder lesson to learn.
In all things we continue to pray without ceasing, and give glory to God who takes care of the big things and the small things. We thank you all for doing the same.
On to today's news:
Brady developed a blod clot in his IVC (The inferior vena cava (or IVC), also known as the posterior vena cava, is the large vein that carries de-oxygenated blood from the lower half of the body into the right atrium of the heart.- thank you Wikipedia!) late last night, so they performed an ultrasound to find out for sure.
His A-Line went bad last night (it wasn't able to draw labs any more) and because of his Down Syndrome, he has extra small arteries and it's hard for them to re-insert them. They performed a small procedure where the opened up his left wrist and inserted the line with the artery visible. This means they now have a clear reading of his blood pressure and other vital signs.
He's tested negative for any bacterial infection for the last 48 hours (Praise God!) which rules out things like pneumonia, so they took him off antibiotics.
Because he held stable for the last 24 hours under the current routine, they took him off the paralytic medication, added an anti-coagulant (for the blod clot) and have started giving him formula through an NG tube in addition to IV fluids.
So as parents, the fun is now just starting. Brady is starting to respond to touch and sound (apparently he's still ticklish when sedated! ), although because he's still on a breathing tube they are going to keep him pretty sedated until that comes out, so they don't aggravate his pulmonary hypertension.
Many of you have expressed admiration for how we're doing right now, and don't think we don't appreciate it. But like I was telling my dad earlier tonight, it's pretty easy to trust God with the stuff that you don't think you can have control over. It's the little things like getting a house moved, or figuring out what dinner's going to be, or what to wear when you leave the room in the morning that are harder to recognize God's providence in. For Brad and I, learning how to trust that God's will is being done in every aspect of our lives is a much harder lesson to learn.
In all things we continue to pray without ceasing, and give glory to God who takes care of the big things and the small things. We thank you all for doing the same.
Tuesday, February 19, 2013
Brady Update 2
Hi all- if you have gotten any updates from me today, I've probably cut and paste this message-
Earlier today Brady's Blood pressure was low so there was less oxygen going to his Brain and extremities. His lungs are starting to clear up, but there is still a significant amount of "fluff" clouding up the xrays.
He isn't peeing even though they have him hooked up to major league fluids so the thought is that the low BP is affecting urine production, so he is hooked up to a catheter.
Had a pretty severe fever all night. Put him on ice packs and this inflatable cold air bed, which has really helped- he dropped from 103 degrees to 97!
They did a blood transfusion to get more oxygenated blood into his system. He has responded well to that; his temp is down, blood pressure is up and the percentage of oxygen he is receiving from a machine has decreased from 60% to 40%.
A hard day that was made better by prayers, messages of encouragement and reading scripture. It's not easy to see him hooked up to everything but its wonderful to hear that he is making improvements...Brady is NOT a quitter!
We are learning to praise God in all circumstances, and I realize so often during our days that we are so fortunate to be children of a God who controls huge things like Brady's health, to small things like the delicious coffee my wonderful sister-in-law brought us.
Thank you to our prayer warriors.
Xoxo
Earlier today Brady's Blood pressure was low so there was less oxygen going to his Brain and extremities. His lungs are starting to clear up, but there is still a significant amount of "fluff" clouding up the xrays.
He isn't peeing even though they have him hooked up to major league fluids so the thought is that the low BP is affecting urine production, so he is hooked up to a catheter.
Had a pretty severe fever all night. Put him on ice packs and this inflatable cold air bed, which has really helped- he dropped from 103 degrees to 97!
They did a blood transfusion to get more oxygenated blood into his system. He has responded well to that; his temp is down, blood pressure is up and the percentage of oxygen he is receiving from a machine has decreased from 60% to 40%.
A hard day that was made better by prayers, messages of encouragement and reading scripture. It's not easy to see him hooked up to everything but its wonderful to hear that he is making improvements...Brady is NOT a quitter!
We are learning to praise God in all circumstances, and I realize so often during our days that we are so fortunate to be children of a God who controls huge things like Brady's health, to small things like the delicious coffee my wonderful sister-in-law brought us.
Thank you to our prayer warriors.
Xoxo
Psalm 116
1 I love the Lord, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came over me;
I was overcome by distress and sorrow.
4 Then I called on the name of the Lord:
“Lord, save me!”
the anguish of the grave came over me;
I was overcome by distress and sorrow.
4 Then I called on the name of the Lord:
“Lord, save me!”
5 The Lord is gracious and righteous;
our God is full of compassion.
6 The Lord protects the unwary;
when I was brought low, he saved me.
our God is full of compassion.
6 The Lord protects the unwary;
when I was brought low, he saved me.
7 Return to your rest, my soul,
for the Lord has been good to you.
for the Lord has been good to you.
8 For you, Lord, have delivered me from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the Lord
in the land of the living.
my eyes from tears,
my feet from stumbling,
9 that I may walk before the Lord
in the land of the living.
10 I trusted in the Lord when I said,
“I am greatly afflicted”;
11 in my alarm I said,
“Everyone is a liar.”
“I am greatly afflicted”;
11 in my alarm I said,
“Everyone is a liar.”
12 What shall I return to the Lord
for all his goodness to me?
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the Lord.
14 I will fulfill my vows to the Lord
in the presence of all his people.
and call on the name of the Lord.
14 I will fulfill my vows to the Lord
in the presence of all his people.
15 Precious in the sight of the Lord
is the death of his faithful servants.
16 Truly I am your servant, Lord;
I serve you just as my mother did;
you have freed me from my chains.
is the death of his faithful servants.
16 Truly I am your servant, Lord;
I serve you just as my mother did;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the Lord.
18 I will fulfill my vows to the Lord
in the presence of all his people,
19 in the courts of the house of the Lord—
in your midst, Jerusalem.
and call on the name of the Lord.
18 I will fulfill my vows to the Lord
in the presence of all his people,
19 in the courts of the house of the Lord—
in your midst, Jerusalem.
Praise the Lord.[a]
Footnotes:
- Psalm 116:19 Hebrew Hallelu Yah
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