Sunday, February 22, 2015

Medical Mama

"Gee, I wish I could stay home and just play with my kid."  
All tuckered out from staying up
 way too late playing.

Yeah, not said to me, said to another medical mama friend of mine.  And this on a day where her kid tried to die on her. Perhaps not the best timing, and frankly, untrue in sooooo many ways.  

So what does it mean to be a medical mama?  It means that you've learned the true meaning of "fly by the seat of your pants."  'Cause nothing, nothing is ever set in stone.  It means that while the rest of the world celebrates Christmas on December 25th, yours might be put of until January 1st.  It means "celebrating" your 25th anniversary with a helicopter ride  for two, but not with your husband, with your child instead.  It means that when your parents buy plane tickets for you and your siblings, yours is the only one that they buy trip insurance on.  

For a sibling, it means that there's always the chance that Mom won't be in the audience, on the side of the field, and maybe even at the airport when you come home from your mission.  (Yeah, found out later that was a very real fear of Mary's, and why she lingered so long at the top of the escalator.  She didn't know for sure that I would be there.)  Not that we don't want to be there, not that we won't do everything possible, but if there's been a crisis, an emergency happening right then, we can't be.

It means being ever vigilant, knowing what your kids' norms are.  And I'm not talking about sleep schedules (still don't know what those are).  I'm talking about heart rates, breathing rates, how much oxygen he needs.  It means that I'm on alert (yeah, again) because while he's looking good otherwise, his heart rate has been about 20 beats per minute higher than usual for the past 24 hours.

It also means that you're super prepared for just about anything.  There's Plan A, Plan B,  and Plan C, not just for him, but for the other kids, too.  And while there may not be a Plan D, you're put enough things together fast enough that you've got the groundwork for D through Z.  

It means that you're thinking of any way, and every way, something as simple as getting dressed can be used for therapy, to teach skills that come so naturally to everyone else, but your child has no concept of.

I was thinking the other day (I know, dangerous).  I can pack for a two week stay anywhere in less time than it takes for the ambulance to get here.  They're only about a mile and a half away.  It doesn't take long.  Mostly it's because it's been packed for the past almost five years, with a list of the few things that I use on a daily basis to throw in there (toothbrush anyone?).
My brother found these growing in his yard.  It made my
day that he though of us, of Aaron, and sent me a picture.
Little purple pansies, tiny but strong, bringing color and
light, just like Aaron.

It also means that you understand so much more.  It means that when a friend says she "can't" do something, you don't look for the reasons behind why she's trying to get out of it.  You know that sometimes the simple things are the most difficult, and that everyone needs to be cut some slack, and given some love. 

You know you can (and will) reach that breaking point, the cliff on the edge of the abyss, teeter, but still pull back, pick yourself up, shoulder your load, and keep going.  And even find the joy.  'Cause there is joy, a lot of it.

You grow, you learn, maybe even more about yourself that you do your child.  You learn that deep within yourself is a strength that you always hoped was there, but secretly were afraid was lacking.  You learn to listen, really listen, when someone's hurting, and to not say anything but just be there, 'cause you know that sometimes there are simply no words for the pain, or the joy.  

So next time you're thinking a medical mama has it "so great," make sure you're thinking for the right reasons.  We do have it great, but not because we get to just "play all day" with our kids, or have the awesome, front row handicap parking spot right by the door.  

We have it great because we understand the fragility of life, of the here and now.  We understand the joy that comes when a milestone is reached and recognized.  We get to be with these wonderful teachers of our souls who fight through more than anyone else, and do it with smiles on their faces.  And who teach us love.

“I think a hero is an ordinary individual who finds strength to 
persevere and endure in spite of overwhelming obstacles.”  
~ Christopher Reeve

Wednesday, February 11, 2015

Five Years Ago Today...

Five years ago today, it was snowing.  It was a Thursday.  And it was one of the most painful days of my life (so far).

We went for our 20 week ultrasound.  Michael went with me, and William had some things he had to finish up so he met us there.  I remember wondering if I would have to just tell him what they said.  I mean, the big news was, boy or girl, right?

But that's not what happened.  It did seem to take a little longer than I expected, but after a little while, she asked if we wanted to know what it was.  Of course!  That's the real reason I was there.  A little boy, another precious little boy.  Then she pointed out that he had a cleft.  Okay, so maybe it was better that it was a little boy.  I mean, even today, scars are more acceptable on boys than girls, and if he didn't like it, he could grow a mustache, right?

I remember thinking that while I didn't know a whole lot about clefts, that sometimes it was a series of surgeries over several years, it was okay.  We'd deal with it.  And then she left to go get the doctor.  He came in, all somber, and said that our little boy had some challenges.  So it's a cleft, not the end of the world.

Except it was much more than a cleft.  It was his heart, his clenched hands, his crossed legs, some things on his brain called choriod plexus cysts, and so on.  He showed us each of them on the ultrasound, and tears filled my eyes.  I silently sobbed as he went over each part.  Michael noticed and wanted them to stop hurting Mommy.  Daddy told him that they weren't hurting me, but at that moment, I felt like I would never not hurt again.  They said it might be a chromosomal issue, but I had no idea what that meant.

An appointment was set for us for the next Tuesday (Tuesday!!  how was I supposed to make it that long??) with a maternal fetal specialist.

We went home, and I sent an email out to family, telling them what we knew, also asking them not to email or call because I somehow had to stop crying before the kids came home from school.  We wanted to tell them all together, and Deborah was away at college.  We had to wait for the weekend, and I had to try to pretend things were okay.  All I wanted to do was crawl into bed and pull the covers over my head.

I started doing research.  I put each anomaly (I hate the word defect) into the computer.  Okay, that's not too bad.  Okay, that can be fixed, explained, made to go away.  And so on.  Then I put them all into the search engine together.  Trisomy 18.  It was right there, and I knew what they'd been thinking.  And I knew they were right.

One of my darkest nights.  Not my only one, but the first of what would be many, as I wondered how I could have failed my little one, failed to give him a strong body.  I hurt with every fiber of my being as I tried to contemplate burying my baby.  But as the morning came, I vowed that if he was able to fight, if we could make it to his birth, I would give my all, I would learn all I could, just to give him a chance to live.

And so our journey began...

Through the blackest night, morning gently tiptoes, feeling its way to dawn. ~Robert Brault

Sunday, February 8, 2015

It's Okay To Be A Lower Light

Sometimes (often?) we feel like we have to know it all, do it all, be it all.  Especially when you parent a medically fragile child, the feeling creeps in.  Do I really know enough?  Can I do it?  I have to, 'cause if I can't, the unthinkable can, and probably will, happen.

Somehow, I think we bargain with God that if we can just be all and do all, we can run faster than the diagnosis, than the challenge, keep ahead of it.  It's not true, and deep down, we know it.  But that doesn't stop us from trying, and it's also exhausting.

Anyway, so that's the background to this, where I've been, what's been going on inside this crazy, mixed-up brain of mine.

Then last night, I went on a mother-son date with Matthew to a Vocal Point concert.  They're an A Cappella group from BYU that's really popular around here.  If you remember The Sing-Off back in  2011, they had a very successful run there.  Anyway, fabulous group of guys.

I love music, I love being with Matthew.  I was all set for a really good time.  And we did!  I laughed so hard!  If you want to experience it, I highly recommend their YouTube channel.  What these guys can do with their voices is nothing short of amazing!  You'd swear there had to some instrumentals, some back-up, but no, it's all them.

But here's the kicker, where this whole thing started off.  While they did a lot of fun, popular, upbeat and even silly things, there were some very spiritual moments in there, too, usually preceded by an intimate look into a personal experience.

I can't remember what was said before "Brightly Beams Our Father's Mercy," but that one hit home, deep down.

See, I think I've been trying to be a lighthouse, but that's not my role.  I just need to keep the lower lights, the shore lights, on.  I only have to do what I can.  And as I sat there and thought about all those whose light has helped shape my own safe passage into the harbor, I'm amazed.  My fellow trisomy moms, heart moms, trach and vent moms, other special needs parents.  The staff at the hospital, our home nursing staff.

You know, when you combine a lot of smaller lights, they give off a great light.  It illuminates the path, makes it clear, enlightens the mind.  And I can do that, too.  I can add my own small light.  I can give a hug, encouragement, tell someone what I've learned and hope it helps them.

They also sang "Nearer My God to Thee."  Another reminder of Whom it is that is the Lighthouse.  And I am so grateful for His guidance every day, every hour, every minute, so grateful to know where my strength really comes from.

And after last night, I add nine other lower lights that help to guide my way.  Thanks, guys.  I don't know that you can ever know what you did for me and mine.

And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength.

**  I'm afraid I couldn't find a youtube version of them performing "Brightly Beams our Father's Mercy" but here you can at least hear a beautiful version of it.

Sunday, February 1, 2015

Life and Death, Suffering and Joy

Aaron is home, for which we are very grateful.  He even seems to be doing well, although I'm pulling some nasty colored stuff out of him.  I'm holding out for that just being left-over junk because his lungs have been so constricted with the asthma.  It so need to NOT BE another illness.

I experienced some challenging moments in relation to emotions at the hospital.  Two very different scenarios, in close time proximity.

The first one occurred when I was out in the hall talking with Aaron's doctor.  I kept hearing a pulse/ox alarm, the same alarm that we respond to here at home.  But Aaron was on hospital monitors, not ours, and it wasn't his alarm.  It was a few doors down.  Down there, a little girl was being prepped to go back to her long-term care facility.  But it's only going to be a very short stay.  Her parents are quickly, oh so quickly, learning to take care of her because the goal is to get her home before she goes Home.  Because the hospital is so full right now, the other facility can teach her parents faster.  And time is not on their side.

Yeah, she's not going to live much longer.  Her tattered little body is tired, and done.  They're racing against a short time clock.  I looked in her eyes as they wheeled her down the hallway, and it may just be my imagination.  But her eyes looked tired, resigned, and oh so world weary.  My heart aches for her, for her family, for all they endure.  And she has endured much.  I don't know how old she is, but my guess is between two and four.  And her time is now measured in days.

Just an hour or so later, I headed to the Ronald McDonald Room to see if I could find something for dinner.  Coming towards me was a crowd.  In the lead was a little girl in a wheelchair, and surrounding her were people carrying balloons, some boxes, what looked like games.  As they got closer, I realized I recognized Mom.

The last time I saw her, she was sitting bedside in the PICU, and her daughter was lying motionless, tied to more machines than Aaron has ever been, laid low with Influenza A.  I have wondered so many, many times over the past month how she was doing, if she even survived.

And here she was, on her 5th Birthday, and tied to NOTHING.  She's been moved to the Neuro Trauma Unit.  She still has a long ways to go, but it was so wonderful to see them!

I've pondered this over the past few days, also in conjunction with my own challenges.  And the only way I can see through this world is to look to my Savior.  I know He lives, He loves us.  He wants us to come to Him.  He holds our hand, even when we are in too much pain to realize it, but when we do notice, we know He is always there.

Life and Death.  Suffering and Joy.  Pain and Relief.  And He is by our side.  Always.

For I the Lord thy God will hold thy right hand, saying unto thee, 
Fear not; I will help thee.