Tonight’s theologic thoughts

There was a time, before Matthew’s miraculous healing, when Aaron and I would lie awake in bed night after night crying, holding and comforting each other, and trying to “make sense of it all.”  We never said, “Why us?” – we knew there was no answer to that question.  Our questions were more along the lines of, “Why does this happen at all?”  Why are babies born with hearts that are too deformed to let them live?  Why are little lives cut so short?  Why does our little boy have to suffer heart failure and die?  Why do little ones have to suffer at all?  Why does all this “bad stuff” happen?

Most of the comments and notes of comfort we received were very helpful, comforting and encouraging – and there were so many of these – thank you to all who loved and supported us through this time!  However, some comments, although very well-intentioned, were just not helpful.  Why did it bother me so much when someone said, “God won’t give you more than you can handle.”  I know that God, through His grace, does give us strength to face even the toughest situations – especially if we ask for the strength and rely on Him – but part of that comment implies that God “gave” us a sick and dying baby intentionally.  The God I know and love doesn’t create sickness or pain, or give them to anyone.  But, if God is truly in control of everything, why does it happen?

It also bothered me when someone would say, “God gave this to you for a reason.”  I do appreciate, and am so grateful that God, through His grace and mercy, can bring good out of any situation.  But, that doesn’t mean that he created a problem so that he could bring good out of it.  Again, the problem of God giving or creating the disease.

The answers we found for all of these questions were answers we already knew, but there was comfort in sharing them with each other anyway:  Put simply, God doesn’t create sickness or disease.  But, we live in a fallen world, full of sin.  When sin entered the world, things like disease, pain, war, malformed hearts and extra chromosomes happen.  These things are not of God, and He does not like to see us hurt, nor does he give us these things in order to bring about something good.  This is Earth, not heaven.  All will be perfect in heaven.

We haven’t talked about it for awhile.  I guess these questions just aren’t on our minds these days, now that we are holding and playing with our beautiful, healed baby boy.  It feels like the “bad stuff” is over.  But, what about Matthew’s extra 21st chromosome?  I guess over time, that has ceased to be part of the “bad stuff” in my mind.  Life is very good now – sure, we’ll have challenges, and everyone has rough days now and then – but our Matthew is alive and well.  He’s more than that, in fact – he’s beautiful.  He’s playful.  He’s funny.  He’s so sweet and loving.  I will never find words adequate to describe him – you’ll just have to come meet him for yourself.

So why bring this up now?  Memories of our theological discussions came flooding back after reading Amy Julia Becker’s article, Babies Perfect and Imperfect.  Amy learned that their daughter, Penny, had Down syndrome shortly after she was born, and struggled with the same things that many mothers of kids with Down syndrome do, wondering what “disabled,” and “abnormal” would mean for her daughter and their family.  She came to realize that dependence, need, and vulnerability were part of the human nature God gave to every one of us.  No person is completely self-sufficient – if we were, we wouldn’t need God.  Our kids with special needs exhibit those characteristics of human nature more fully than the rest of us, but that doesn’t mean that they are disordered or broken.  She says it much better than I do, and I would encourage you to read her full article.  For now, a couple excerpts:

At first, I could only see her extra chromosome as evidence of imperfection, as a series of limitations that were different and worse than my own human limits. I didn’t conceive of limits—hers or mine—as potentially good: gifts from God that enable each of us to admit our creatureliness, our need for one another, our need for God’s grace.

Early on, I had asked my mother whether she thought Down syndrome happened because of sin in the world. She responded gently, “The only evidence of sin I see is in how the world reacts to Penny.”

And:

For a long time, I was looking for answers to questions that were hardly worth asking, and I was trying to recreate my daughter according to a cultural standard of normalcy rather than according to a biblical understanding of full human life. We are created in the image of God, recipients of divine love and grace, and we bear the responsibility and privilege of extending love into the world here and now, and forever more.

Some of these memories were on my mind earlier today as well.  I had a “Mommy milestone:”

I finally dumped out and threw away Matthew’s morphine.

As I was cleaning our bathroom cabinet today, I finally just dumped the stuff down the drain and threw away the bottle.  Why is this such a big deal?

The morphine was a prescription we had for Matthew when we brought him home on hospice.  He was expected to have heart failure within his first few months of life – heart failure that would bring with it pain and distressing respiratory failure.  When this happened, we were to give Matthew the morphine.  It was up to us to decide when he needed it, and up to us to decide how often to give him his dose.  It would take away his pain and distress, but, as a side-effect, would probably also decrease his drive to breathe to the point where he would stop breathing.  That would be the end.

I shuddered every time I saw that bottle.  It was to end pain, I knew, but how would I live with myself after I gave it to him?  How could I give my own son a medicine knowing that, even though it would take away pain, it could also end his life?  What if I gave too much?  What if I gave too little?  We didn’t want him to suffer needlessly, but we didn’t want to expedite his death either!  That is yet another decision that no parent should ever have to make.  I am so thankful that I never had to open that bottle – until today, when I dumped the whole thing out!

SOOOO Big!

A few days ago, we decided to try to teach Matthew to raise his arms up when we say, “How big are you?”  We had heard that the range of motion would be good for his arms, and up until now, he was not really raising his arms above his head.  We were curious to see how long it would take him to learn a new “trick, ” too.  So, we put him in front of a mirror, and helped him raise his arms above his head while we said, “Sooo Big!” and clapped for him.  We showed him 6 or 7 times, then he started doing it on his own!  He loves praise and applause, so he will raise his arms up and clap for himself now!  He especially likes it if he can see himself in a mirror – or even better – his shadow!  We were amazed by how quickly he picked up on this.  Good job, Matthew!  You are Sooo Smart!

The boys and I headed to Walla Walla for the weekend, since Aaron was on call, and Matthew did a LOT of “SOOO Big” with his shadow while we were there.  He even let go of his extreme stranger anxiety for Grandma and Grandpa, and let them hold him and play with him.  It was great!

Here’s a video of some SOOOO Big Shadow Fun!

Kitchen project update:

My pantry is now full:  12 qts pears, 6 qts peaches, and 36 qts applesauce!  Not bad, considering I “didn’t get my canning done this year.”

Also, Micah helped me grind some flour and “scoop” it into my flour container.  It’s a job he loves to help with, and usually does a really great job . . . but this time I had to leave for a minute to take care of Matthew . . . and that flour is just SO tempting to play in!  He came to find me with a face FULL of flour, and asked, “Mommy, does flour taste good?”  Good thing it cleans up easily!

For tomorrow – a truly wordless Wednesday project!

Wordless Wednesday

The boys were having fun in Matthew’s crib this morning.  They are starting to really play together, which I love to see.

This week’s project:  Applesauce!

We were blessed with a bunch of apples from a friends orchard, and have spent a lot of time this week making applesauce.  It’s the biggest canning project I’ve tackled all on my own – and I miss my mom!!  We’ve had fun with it, though, and have tried to take things one step at a time.

Monday:  We washed all the apples, then just processed 1 batch.  Micah was a big help washing the apples.  He would go out in the garage to get the apples, then put them in the “wash” sink.  I would scrub them, and put them in the “rinse” sink, where Micah would bob them around for awhile, then take them out and put them in our big red bin.  It was a wet job . . . and Micah doesn’t like wet clothes . . . so . . .

Tuesday:  Lots of chopping and processing.  This is my applesauce set up:  (or, alternatively, “Why my next kitchen will have more counter space!”)

Finished product, read to put in jars:  I’m always amazed by the kitchen-aid attachment, and by how little waste there is.  The bowl on the right is all that we throw away for the amount of sauce on the left – it is really just peels and seeds.

Tuesday night:  chopped the rest of the apples, so they are ready to process today!  I had to take a shelf out of my refrigerator to make room, though.

 

In other news:  I accidently left an important link off of the My Links post.  In the shuffle of reorganizing the side bar, the Gifts link was left off.  It’s back on now, and I’ve updated the Links post to reflect that.  The book, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives is one that we have really enjoyed.  It is a collection of 60+ short stories, written by mothers of kids with Down syndrome – all of which are uniquely encouraging.   Libby introduced us to the book, saying “This is what I read on my hard days!.”  Their web site is also very encouraging for families who have a loved one with Down syndrome.  Part of the website is dedicated to personal blogs – they have selected several blogs from families with a child with Down syndrome, and every post from those blogs gets put on their page.  Our blog was recently selected, so from now on, every post that I publish will also be published on the Gifts page!

 

I know this is far from “wordless . . . ” 🙂  Maybe next week we’ll have a truly wordless Wednesday post.

A Little Chesterton

A couple quotes from G.K. Chesterton.  His words speak so clearly to the issues of today, it is hard to believe he was born in 1874.  (Thanks to Shannon and Nami for sending the quotes!)

“Tolerance is a virtue of a man without conviction.  Conviction is the state of being convinced.  If there is no truth that is ‘more true’ than any other ‘truth,’ then there is no truth worth defending.  If there is no truth worth defending, there is no room for conviction.”

And . . .

“Every one of the popular modern phrases and ideals is a dodge in order to shirk the problem of what is good.  We are fond of talking about ‘liberty;’ that, as we talk of it, is a dodge to avoid discussing what is good.  We are fond of talking about ‘progress;’ that is a dodge to avoid discussing what is good.  We are fond of talking about ‘education;’ that is a dodge to avoid discussing what is good.  The modern man says, ‘Let us leave all these arbitrary standards and embrace liberty.’ This is, logically rendered, ‘Let us not decide what is good, but let it be considered good not to decide it.’  He says, ‘Away with our old moral formulae; I am for progress.’  This, logically stated, means, ‘Let us not settle what is good; but let us settle whether we are getting more of it.’  He says, ‘Neither in religion nor morality, my friend, lie the hopes of the race, but in education.’  This, clearly expressed, means, ‘We cannot decide what is good, but let us give it to our children.'”

If you have others, please feel free to share.

My Links

I have recently added a lot of links to my sidebar, so I thought I would let you know what they are, and why they are on my site!  (It feels like I’m introducing you to my new friends, and in some cases, I am!)

By the way, anything that is written in red anywhere on this blog is a link you can click on.  It’s not the conventional underlined-in-blue, but that’s the way this blog design does links.

Favorite Related Links

  • Blessings and Glory – Formally labeled “Charlie’s blog,” this is the blog of Libby, Alex, Henry and Charlie.  They are good friends of ours, and Libby writes about many issues,  but particularly about the blessing of their son Charlie, who has Down syndrome.
  • Days with Dylan – A story of a beautiful little boy, Dylan, who also has Down syndrome.  He has a complete AV canal heart defect, just like Matthew did, and will be having surgery November 4th.  Please keep Dylan and his family in your prayers as they get ready for and go through the surgery!
  • GiftsMothers Reflect on How Children with Down Syndrome Enrich Their Lives.  It’s a wonderful book, an encouraging website, and a fun collection of blogs dedicated to life with Down syndrome.  Our blog has recently been added to their collection of posts.
  • Mommy Life – Barbara is a mother of 12 children.  Nine are biologically hers, including Jonny, who has Down syndrome.  She and her husband then adopted 3 more children with Down syndrome.  She calls her blog a “smorgasbord of parenting, cultural, political, and spiritual wisdom,” and I enjoy reading it.  Her political posts lately have been excellent.
  • Penny Becker – Penny’s mom, Amy, is the first mother of a child with Down syndrome that I contacted online.  My dad wrote to her after reading her article, Evidence-Based Standard of Care, which echoed so many of my own feelings regarding Mattehw.  This is Penny’s blog.
  • Pinwheels – Jennifer Graf Groenburg is the author of Road Map to Holland.  The book is about her first two years with her son, Avery, who has Down syndrome.  Her book is excellent, and I appreciate her continuing the story on her blog.
  • Thin Places, by Amy Julia Becker – On this blog, Amy often uses stories about her children, Penny and William, to illustrate a point or teach a lesson in becoming more Christ-like.  It’s amazing how often our children take us to “thin places,” where the gap between heaven and earth narrows.
  • Walk in Lily’s Garden – Lily is a beautiful little one who is recovering from a complete AV canal repair (9/22/08).  She is doing pretty well, but please keep Lily, her mom, Cathy, and the rest of her family in your prayers as the recovery road is not always smooth.

Friends

  • This section is a list of blogs that are by friends of mine, mainly from high school or college.  It is mainly a place for me to keep all the addresses in one place, and an easy way for me to keep in touch with friends.  If you have a blog that I don’t know about, please let me know so I can add it to the list!

Interesting articles and links

  • Complete Atrioventricular Canal Defect Informationdetailed information about complete AV canal heart defects and repair
  • Defiant Birth – an article, which mentions our story, about women who resist medical eugenics – who continue pregnancies when pressured to do otherwise.
  • Dr. Ray clinical psychologist, father of 10, author, public speaker, (comedian??), and parenting expert.  We enjoy him and his advice.
  • Evidence-Based Standard of Care, by Amy Julia Becker – aforementioned article, well worth reading.
  • Mama says . . . – A blog I really enjoy reading.  A devoted Catholic mother to 7 children, age 9 and under, shares stories, practical tips, advice for living-on-a-budget, and has some wonderful things to say about current political issues as well.
  • Perona Designs – Holly Perona is the talented, kind, and incredibly generous photographer who took pictures of Matthew in the NICU, then gave us another family portrait session later.  (The second session just happened to be on the day we learned Matthew was going to live!)  She literally gave us all of the portraits, not charging us a cent for any of her work.  Our portraits can still be viewed on her website by clicking on “client area,” then typing in the passwords, “matthew” or “vawterfamily.”  We can’t thank her enough for all she’s done for us!