Monday, September 26, 2011

Matters of the Heart

Last night Mr. Fantastic and I watched a movie, and as the main character's flashbacks started, I thought, "I know flashbacks are a great tool for movies, but it just doesn't happen that way in real life." I don't think I've ever relived a moment in my past so vividly just by thinking about it. I have memories that can be triggered by certain sights, smells, words, etc, but that doesn't mean that I relive them, I just... well, remember them.

And then today I took Roo to the cardiologist, and as I pulled up to Children's Hospital I had a vivid memory of arriving at the ER there with our 3-day-old baby, who had jaundice--and then issue after issue, which we now know were just signs trying to point us to the ultimate diagnosis of Down syndrome. And I truly did relive the moment. And as I walked in and saw all the same sights, I could almost audibly hear the words I said to my husband over a year ago, "This all seems huge right now, but I know that someday we'll look back on this and laugh. We'll drive past Children's and say, 'Remember when we had to go there? Gosh, which kid was it? And was it for... jaundice or something?' In the long run, this will be nothing." (Ha. God must have had a little chuckle over that one.)

And now the murals at Children's are familiar to me. I know how to get everywhere I need to go. My big kids (when they're with me--and thankfully they were not today) know where the big ball maze is. It's part of our lives. And as much as I am growing and changing and accepting--and even embracing--our new life, there's a part of me that hurts every time we walk through those doors. It's a love-hate relationship--I am so thankful that we have a Children's Hospital just 20 minutes away, but I really wish we didn't need it.

But we do.  We do need it, and today we were there for a quick check of Roo's ticker. And by quick, I mean it took roughly half of an eternity longer than I had anticipated.

If you're not keeping close tabs on Roo's heart issues (which of course you all are, I'm certain), here's a quick recap. He was diagnosed at his first appointment last year with two holes in his heart, an Atrial Septal Defect (ASD) and a Ventricular Septal Defect (VSD). The VSD was very small, and the doctor actually thought it may close up on its own. The ASD was "moderate" in size--one step above small--and would likely require a small procedure to repair it. The procedure wouldn't be done until Roo was around age 5, and it would  not require open heart surgery, thank goodness. There was a chance it could also repair itself, but most likely it wouldn't because of its size. For a child with Down syndrome, the doctor told us, Roo's heart issues were very minor. He just asked that we follow up about once a year to keep an eye on the ASD until it could be repaired.

So it was the annual checkup that took us back to the doctor's office today. Next year I will remember when I call to schedule our appointment to ask for an echocardiogram. Both times we've gone, the doctor has wanted one but it wasn't on the schedule, so our appointment took much longer than necessary because we had to wait for a chance to be squeezed in for the echo. By "longer than necessary", I mean that we spent approximately 15 minutes with the doctor, 30 minutes getting the echo, and an hour and forty-five minutes waiting. Did I mention that Roo's appointment was at 12:30, and that his naptime is at 1:00?  He did fall asleep while we were waiting for the echo, but woke up about 20 minutes later when I laid him down for the test. By the time we were done, the poor kid was toast.  (And then he went to bed for the night at 6:00--he was exhausted!)

ANYWAY, we finally got the echo and all of the waiting out of the way, and here's what we heard: GOOD NEWS. It looks like the VSD pretty much has closed itself up!  The doctor said there's a chance that there's still a pinhole leak, but he really thinks it is closed and is completely unconcerned about it either way. And the ASD has shrunk by over 50%!! This is HUGE, especially since Roo has been growing--and his heart along with him.  :-) Last year one side of his heart was enlarged because of the extra blood flow (due to the hole), but thanks to the shrinking of the hole that is no longer the case either!  And the cardiologist even said there's a good chance that Roo won't need the procedure to repair this hole!!! That is a huge relief for me.  HUGE.

There was one other defect that he hadn't seen last year. It's called a cleft mitral valve leafleft.Yeah, I only remember because I had him write it down for me. Basically there's a little divet out of the tissue of one half of a valve, so every time the valve closes, a tiny little bit of blood seeps back through. But did you notice the key word there? Tiny. He said it is very minor and should not require any intervention. This is, however, probably my biggest prayer request coming out of this appointment. This is the only of Roo's defects that could worsen on its own--and while it is repairable, this particular defect would require open heart surgery to fix. Again, the cardiologist really didn't seem concerned, so I am not going to lose sleep over it, but you'd better believe I'm going to be praying that it doesn't progress into anything bigger!

But all-in-all, GREAT news from our appointment today. It was definitely good for my heart. And by the way, I do know that it seems a little melodramatic for me to feel so strongly about being at Children's Hospital. The truth is, Roo has been blessed with amazingly good health for a child with Down's and almost all of our appointments there have been "just in case" checks--not sick visits. And I am so, so thankful for that. But I just remember how... blissfully ignorant I was in that first week we spent at Children's when Roo was born. Don't get me wrong, I was unbelievably--and perhaps disproportionately--worried about my baby (I had, after all, just given birth, and was very sleep-deprived and maybe just a tad hormonal...); but I was also certain that once Roo got released, we'd never see the inside of that building again. We wouldn't have to be one of those families who is at Children's all the time because... well... that just wouldn't happen to us.

I remember being that person. But I'm not her anymore. I miss her sometimes--I mean, it's called blissfully ignorant for a reason--but I wouldn't want to be her again. She might not have known as much about Children's Hospital as I do, but she also didn't know sweet baby Roo like I do either. And I wouldn't trade that for the world.

Tuesday, September 20, 2011

More than enough

Roo is almost 18 months old now. 18 months! 18 months since I met the boy who would change my life.  18 months that I have experienced joy and sorrow in ways more intense than I had ever imagined.  18 months of a spiritual journey that I wouldn't have believed God had in store for me.

I was so angry when we found out that Down syndrome had entered our lives. While we waited for the test results, I pleaded with God to "make" them negative. Please, Lord, let the doctors be wrong. But He said no. The tests were positive. Our lives had changed.

I began a new plea. Please, Lord, take it away. I didn't know what that would "look" like exactly--Down's isn't a disease, so it's not like he could recover... but we're talking about GOD here--He can do ANYTHING. Right? Prove it, God. Take it away. But He said no. Roo's Down syndrome was here to stay.

As I started to reach out to local organizations for help getting set up with therapies and doctor's appointments, everyone was full of encouraging words. Children who had almost no delays, who walked and talked at the same time as "typical" children, who read at age 3,who do amazingly well in school. Please, Lord, let that be us. Surely that will be us. Make him as typical as possible. But so far... He has said no.  Roo is lagging, even behind other kids I know with Down's. It brings tears to my eyes to even type it out.

Three pleas. Three "no's."

Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” --II Corinthians 12:8-9

The apostle Paul pleaded three times for the Lord to take away the thorn in his flesh. God said no--but not just "no"--He said, "My grace is sufficient for you."

Please, Lord, let the doctors be wrong.  No, but I'll give you the strength to hear the words, even though they aren't what you want to hear. I'll give you the courage to get out of bed tomorrow, even if you are sad and lonely and angry. My grace is sufficient for you.

Please, Lord, take it away. No, but I'll help him to grow stronger each day. And I'll help you to get through your own pain a little more each day. I'll give you support and help and wisdom. My grace is sufficient for you.

Please, Lord, make him as typical as possible. No, but I'll make him a blessing. I will use him to draw you--and others--to me. And he will bring you unbelievable joy in the journey. My grace is sufficient for you.

Sufficient? The more I reflect on that passage, the more I think God must have smiled when Paul penned those words to the Corinthians. God's grace is beyond sufficient. It's abundant. It is not always what we want--but it's more than we could ever hope for. His grace is enough--and more.

Honestly, the roller coaster of emotions I have experienced over the last 18 months has evened out quite a bit. Seeing Roo around kids his age is more interesting than heart-breaking. Telling people at the church nursery--or the grocery store--that he has Down's is just conversation, not cause for tears. Life is good--and even better, it's just life. Not "life after Down's" or "life now"--it's just life.

But some days are still hard. I had the chance today to see an adorable little boy who just turned 1. He's not "Roo's age"--he's a full 5 months younger, maybe a little more. And when I talked to him, he looked right at me and said, "Yeah." One little word. It was adorable. And it literally made my heart hurt.

For hours I focused on the things that Roo can't do. He has no words. He can't walk. He can't use a spoon. He can only put things down by throwing them--he can't figure out how to gently let go. He can't... well, the list goes on.

Please, Lord, just one word. I want to hear my baby boy say "mama." Just one word. Please, God, give me something.

No, now isn't the time for him to speak. It will happen, but not now. My grace is sufficient for you.

And then I walked into Roo's room to get him up from his nap, and he put his hands on the rail of his crib... and pulled himself up to standing!!!

I was BEYOND THRILLED. For a few weeks now, he'd put his hands up and get up tall on his knees, but he has always needed help to get his feet under him--even just this morning when our physical therapist was over. But not this time--he did it completely on his own!

And I didn't think, "I wish he had done this six months ago." And I didn't think, "Well, great, but I wish he would walk." Nope, I thought, "Oh my gosh--this is AMAZING!  Thank you, Lord!"

It wasn't a word. It wasn't what I had asked for. But it was sufficient--and beyond. It was more than enough.

Thursday, September 15, 2011


Here are a few of Monkey's latest takes on life...

Me: "Julius Caesar was a real person who lived a long time ago."  (Don't ask why we were talking about Julius Caesar.  It's a long story.)
Monkey: "Did he die?"
Me: "Well, yes, Honey.  He died a long time ago too."
Monkey (suddenly very serious): "Oh no.  We should pray for his wife."


Forget creation vs. evolution--Monkey has made the most important dino discovery...
"Lamb, dinosaurs are extinct.  So if you smell something really bad, it's all because of the dinosaurs."


His knowledge isn't limited to dinosaurs, though.  He can tell you about sharks, too...
Monkey: "Did you know that sharks don't have bones?  They're skeletons are made of cartilage."
Me: "That's right!  Do you know what cartilage is?"
Monkey: "No."
Me: "It's the stuff that's inside your ears and nose."
Monkey: "Wow!  LAMB!  Sharks' bones are made of BOOGERS!!!!!!!"


And he's loyal, too...
"Mommy, if you get arrested and I'm still a kid and small enough to sneak past the guards, I'll use sharp scissors to cut you out of your cage."

Wednesday, September 14, 2011


5:30 AM Hop out of bed and into the shower
5:45 AM Step out, refreshed and excited for a new day
               Throw on my size 2 jeans and that super-cute new top I found on clearance at LOFT
5:50 AM Put on makeup and do my hair
5:55 AM Read my Bible and pray, thoroughly enjoying the silence while my family sleeps peacefully
6:45 AM Do a load of laundry before the kids get up, so that I feel like I have a head start on the day
7:00 AM Lamb gets up on her own, changes clothes, and comes downstairs to ask me to braid her hair
7:10 AM Monkey gets up, and the two eat breakfast while we quiz each other on the latest Bible stories we've been studying
7:30 AM We sit down for a time of prayer and Bible reading before taking Lamb to the bus
7:40 AM Roo wakes up, but isn't the least bit hungry and is perfectly happy to wait for his breakfast until after Lamb leaves for school
7:45 AM Out the door

In case you were wondering, that was my fantasy about what a typical morning should be.

Here's the reality:
5:15 AM Roo wakes up crying because he's lost his binky (for the 5th time)
5:25 AM I'm still awake, thinking I should just get up, but I am just too darn tired to move
5:35 AM I realllllly want to go back to sleep... I need to get up in 10 minutes...
6:10 AM Oh shoot!  I overslept!  Time to hit the shower...
6:45 AM I've been standing in front of my stupid closet for 15 minutes.  Does it really matter what I where?  I can't stand the way I look, anyway.  Oh, forget it, I'm just wearing sweats.  Again.
6:50 AM I sit down to do my makeup, when Lamb comes in the room. She's up on her own--yay--but she's sobbing because she has just woken up from a bad dream.
6:58 AM Lamb has stopped crying.  I tell her to get dressed.  Monkey comes in already dressed in some strange concoction he has picked out for himself.  He woke up because of Lamb's crying.
7:00 AM "OK, Honey, that's great, but I need  you to get dressed."
7:05 AM "Lamb, stop talking and get dressed."
7:10 AM "Sweetie, it's a pair of pants and a shirt.  Put. It. On. NOW."
7:15 AM "There's no more talking until you're dressed!!!!!"
7:20 AM Lamb: "But Mommy!!!!!!  I don't WANT to comb my hair!  Why do we have to DO something to it?  Why can't you just BRUSH it?????"
7:35 AM Go downstairs to get Lamb breakfast.  Realize that I forgot to pack her lunch last night.  Also realize that Roo is awake.  Throw some Honey Bunches of Oats in front of Lamb and run up to get the baby.
7:40 AM Get Lamb a yogurt, Roo a bottle, make Monkey some oatmeal, and desperately search the pantry/fridge for something that will resemble a healthy lunch.  Hint that maybe Lamb could BUY lunch today, even though it's not Pizza Day.
7:43 AM Lamb finally stops crying about the idea of buying lunch.  I throw together an assortment that may or may not include any actual food groups and tell her to put it in her bookbag.  Explain to Monkey that he will have to finish his oatmeal after we take Lamb to the bus stop.  Be thankful that the kids at least have the courtesy to cry one at a time.
7:50 AM Run out to the end of the street to wait for the bus, because ONE day it came early and we missed it and we would NOT want that to happen again.  (It doesn't come down our road.)  Say a hurried prayer together on our way.
7:51 Wait for the bus.
7:55 Assure Lamb that we have not missed the bus.
8:00 Start to wonder if we HAVE missed the bus.
8:05 If the bus isn't here in 5 minutes, we'll go back home and drive to school.
8:07 Lamb gets on the bus, as happy as if everything had gone perfectly all morning.  At least that's a relief.
8:10 Monkey's oatmeal is hard as a rock.  Roo is starving.  The kitchen is a war zone.  And the day hasn't even started yet.

I don't know about you, but I'm exhausted.

OK, so let's be honest here--it's really not THAT bad.  OK, well, maybe once.  So far.  Most mornings really go pretty well, but they are busy and stressful.  Getting the kids' day started and ended are the two most stressful parts of my day.  And in between, well, I just don't know where that time goes.

I miss it here.  I miss all of you--I mean, the thousands of you that I imagine are here, checking each day with baited breath, waiting for the next words that might fly off my fingertips.  Wait, was that an echo I just heard?  You ARE still out there, aren't you???

The beginning of the school year has not been the Return to Peace and Tranquility that I dreamed thought it might be.  BUT we're getting there.  We're getting into a routine.  Last night I actually remembered to pack Lamb's lunch so that it would be ready this morning--let's hope that becomes a habit, because it was a huge help.  This morning I practiced Bible verses with the big kids while they ate breakfast, and I remembered to take Cheerios for Roo when we walked out to the bus.  Oh... and I told Lamb that there was no talking when she got up this morning until after she got dressed and went potty.  So mean, I know, but it really helped.

And what's more... I finished almost everything on my to-do list!  Back in July when I made my list for what household chores need to be done each day, I quickly realized that I was going to have to do just half of the list each week and the other half the following week.  But yesterday and today I got all but 1 thing done on the list--what a great feeling.  I may actually get my act together after all.  Someday.

And now, I'm in what I am planning to call my "Wednesday Oasis."  My kids are in Wednesday night classes at church, and I have (shhhh... don't say it too loud) no responsibilities.  That's right--for an hour and a half each Wednesday, I get to sit down... by myself... with no dishes or laundry or house projects anywhere near... and listen to the silence.  And read.  And pray.  And (hopefully) blog.  That's what I'm doing tonight.

So I know... I thought once Lamb was in school, I would be back in full force.  And I haven't been.  But I'm getting there.  And I've got lots of good stuff up here (I'm pointing to my brain, which is a little silly since it means I have to type with one hand and you can't see me anyway... but that's where my ideas are), so I hope you'll keep coming back.  And if you don't, I'll just imagine that you do, and that you've brought several hundred of your closest friends with you.  ;-)

Uh-oh.  It's almost 8:00.  Time to go enjoy a few more moments of silence.  Believe me, you don't want me to start writing out what our bedtime routine is like...............................