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.

Like I've mentioned countless times before, life with Brady is sure different than I pictured it being.  It isn't bad at all- God has shown up in ways that I know wouldn't have presented themselves if everything would have gone according to our plans.  And honestly, most of the time I'm not even aware of the fact that our life isn't "normal".  Then I'll get emails from "the bump", telling me about what milestones my child is probably tackling at 13 months.  Or get Brady's 12-month check up pre-evaluation form in the mail, where we have to rate how well he's able to perform certain social, communication or physical skills.  And I have to check off "not yet" more often than I would have thought.  That's when it really hits me and I start giving all of my insecurities shapes through my words and thoughts.  

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

Brady and I at Covenant Harbor last weekend!

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!

The baseball team Brad coaches came out to run

Proud parents with a curious baby

He didn't hate it! (I made his shirt. Super cute, but embroidery is not easy on the fingers!)

All four of my grandparents (Brady's great grandparents) were able to come.
What a blessing!

I loved this cake from Lovin' Oven, a local cakery.  It was delish too!

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!

Join The Brady Bunch!

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.

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!

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!