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!

Out of the Woods

Brady yesterday afternoon, post-op.

Yesterday, Brady had the surgical procedure to close the hole in his heart.  We came to our second home at Lurie Children's Hospital in the early morning, and it wasn't until we were sitting in his pre-op room that the gravity of the situation hit me.  While I wasn't nervous about the procedure, the fact that they were going to cut his chest open and operate on his heart is a big deal.  Even more than that, we had no idea what to expect for recovery.  Was he going to be in pain from the procedure afterwards?  How would we be able to hold him, feed him, bathe him, stop him from rolling around?  

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)

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!

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!

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.

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.

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.

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.