Monday, December 31, 2012

A Prayer For The New Year

Back when I was pregnant with Caedmon and we were waiting to see what his disabilities would look like and what we would be facing, I had a lot of fear. I was realizing in a new way that life was not controllable, no matter how hard I pretended it was. At any moment something so tiny could happen to throw your life whirling in a different direction: a car accident, a fall on the ice, a fire, a baby with a combination of special needs.

As I would go in at night to check on Damek and cover him up, since he would inevitably have kicked off all his blankets, I would stand in his room watching his peaceful, sweet face, and think about how much I wanted to protect him and how little I could actually control in this life.

One night the thought popped into my head of the Israelites in Egypt. Maybe we had just read that story for worship so it was fresh in my mind. Anyway, I thought of the families sprinkling the blood of the lamb on the doorposts of their homes so the destroying angel would pass by, and their firstborn would be saved. I thought, 'That's what I want for my firstborn. That destruction would pass over him, that he would be saved.' So I prayed, 'Dear Lord, please let the blood of the Lamb cover Damek. Please let the blood of the Lamb be on the doorposts of his heart and mind. That only things that are from You would be allowed in.'

I felt so much power in that prayer. It felt like the Holy Spirit was leading in it. That this is the exact prayer I should be praying for my child.

I started to pray it every night, not only over Damek but also over Caedmon, still growing inside me. I started to lay my hand gently on Damek's chest or back or just hovering over him as he slept. It continued to be so powerful to me. So, I started to pray it over Adam and I, then over our extended families, our church families, our friends, our neighbors, anyone who asked us to pray for them. It continues to be my nightly prayer.

This past Thanksgiving, as we were visiting in her home, my mom and I started to talk about how difficult parenting is. We talked about how often we can feel like we are failing. How often we make bad choices, say the wrong things, get caught up in the emotions of the moment, act rashly. My mom shared with me that she used to pray that God would protect her children from herself. That she knew she was messed up and didn't want to pass on her disfunction to her kids. She said, 'I prayed the blood of the Lamb would cover you.'

It brought tears to my eyes. I don't remember her ever praying that as a child. I remember her praying a lot, usually that God would help her find her lost keys or checkbook or various and sundry kitchen items but never that prayer.

I love when God leads multiple people down the same path. It's validation that the Holy Spirit is trying to do something, working on something significant. And I love it when He brings something to the forefront in an obvious, a ha kind of way.

So, as 2012 comes to an end, I pray this prayer for all of us in the coming new year. That the blood of the Lamb would cover us. That the blood would be on the doorposts of our hearts and minds in this new year. That only what is of God would be allowed in in 2013. Regardless of the crazy world we face, the difficulties and struggles, the joy and amazement, our hearts and minds may rest peacefully and squarely in the sure, steady peace of our Father.

May the blood of the Lamb cover you.

Saturday, December 22, 2012

Overwhelmed

This week I was reminded of how overwhelmed I felt the first few months of Caedmon's life. There were so many different doctors, appointments, instructions, it was nearly impossible to keep everything straight. I remember Adam coming home from a doctor's appointment showing me a new medication we needed to give him and the directions for it and I couldn't understand anything he was saying. His mouth was moving and all I could hear was the sound of an adult on a Peanut's cartoon, 'Wah wah wahwah wahwah.'

Now I have two kiddos with lots of doctors, appointments, exercises, stretches, medications, and I do pretty well. Not perfect. There are days I wish I had an assistant, but we do alright. Caedmon had to go in to urgent care, we got a new prescription for our family's first run-in with strep, and I didn't bat an eye. New medication, no problem. It's amazing how far I've come in four years!

I feel like the reminder was a little sign of God telling me He's here still. Walking this walk with us still. Because this week we also talked to Caedmon's doctor about ordering his first wheelchair.

You know how hard it is to even type that? I don't want that to be true. In the back of my mind I've wanted to believe that he would never need one. That somehow he would grow strong enough to laugh in the face of the doctor's and say, 'Spina bifida, bah! I can do ANYTHING!'

But the truth is, he can't fit in a stroller much longer when he gets tired of walking through the zoo, or a museum, or a mall. He doesn't even really fit in it now, we've just been trying to hold off the inevitable.

Another truth we learned this week is that Caedmon is expending 2 1/2 times the energy of another kid his age anytime he gets up to walk, moves around to play, or just goes about his normal day. I'm amazed at his tenacity because you would never guess that by watching him.

So, I'm hoping that this thing that right now seems like a chain tied around his ankle will begin to appear to me as it really is, something to help him become more mobile and independent. I have so many fears. But then again, I had so many fears when he was born and, wow!, watching him, knowing him, loving him has exploded them right and left.

Wednesday, December 12, 2012

Nursing and mourning

Asher and I worked hard to learn how to nurse.  It took 4 months and a lot of struggle and disappointment to finally get to the point where he would latch on and get a good amount of milk.  

4 months!  

Sometimes I thought to myself, 'Why am I doing this?!'  

I had initially told myself that I would try for 8 weeks and see.  If we weren't even close, I would count it as a fail and move on.  But I got to 8 weeks and I just couldn't stop trying.  I knew the moment when he would really get it and take off flying was just around the corner, I just needed to hold on a little longer.

One day he did just get it.  I felt so high!  This is it!  But he couldn't do it very often.  He would nurse really well first thing in the morning and then be totally exhausted for the next 2 or 3 feedings.  I had to accept that once a day seemed to be our norm, take it as a win outside my expectations, and move on with our lives.  I had other children to think about, other events happening in my life.  This was my reality.

That was when he was 4 months old.

Asher is now almost 11 months old.  My plan had been to continue nursing him once a day for as long as he wanted to but stop pumping when he turned a year old.  

I have been pumping 8-10 times a day for almost 11 months!

I just wanted to write that in black and white because I feel like that's a really big accomplishment.  Just so you don't think I'm some kind of martyr, I must admit that I would have quit long ago if Asher had been able to take formula.  Don't think I didn't try.  But enough sessions of him puking until every drop of formula was out of his body led me to believe that it was not the best for him.  And I didn't want him to end up in the hospital again.  So, I kept pumping.

Now, here we are.  Almost 11 months.  And for the last week Asher has refused to nurse.  If I try to force it, he bites me.  If you have never pumped 8-10 times a day every day you do not know how tender you're nipples become.  I have had semi-permanent purple and red bruises on them for nearly 11 months.  They do not harden up or become desensitized.  Biting is very painful, even without teeth.

So, now what?  It seems I have come to the end of an era before I was ready for it to end.  I am having to grieve the loss of this thing I have worked so hard to reach.  It is really hard.  The 3rd morning of no nursing I cried.  I'm tearing up as I type this.

I realize that many people cannot understand why this is such a big deal.  Kids grow up, they change, these are things we want to happen, this is part of parenting.  This is true.  Probably the biggest thing for me in the mourning is giving up my expectation of how things would end up.  Letting go of where I thought we'd be.

This parenting thing is hard.

Saturday, December 8, 2012

The Christmas Program

I have always loved church Christmas programs.  I love seeing the kids up front, taking the lead.  I love to see what comes out, unscripted.  I love to have music take the forefront and, for some reason, many churches only feel comfortable doing that when kids are in the program.  My kids do much better through the service and are much more interested in what's going on. And, don't tell the pastor, I'm not a big fan of sermons so a break from the norm is very welcome.  

But having MY kid in the program just makes it a million times more exciting.  I've been looking forward to today for several weeks, and not just because  it means Adam gets to sit with me. Here are some pictures and a few snippets of my wonderful oldest singing his heart out.  I love that guy!

My singing boy

So excited to see Daddy AND Asher up front to pray.

Asher helping Daddy close the service with prayer.

Caedmon excited that the service is done so he can go run with 'The Kids'

Asher all decked out in his Christmasy gear.





Friday, December 7, 2012

Thursday, November 1, 2012

Moments I Cherish

I've been running behind since 2 o'clock this morning when Asher decided sleep was ridiculous and shouldn't we all be up playing and giggling anyway.  We had an early appointment with Early Intervention that left me even further behind so by the time we got to bedtime I was scrambling to get things together to get the baby in bed at a decent time since he was loudly proclaiming that the time was about to pass us by.

As I was getting milk together, I noticed that things had gotten pretty quiet in the baby's room.  I strained my ears to hear what was going on and I heard Damek's voice.  He was reading a story, to Asher.  He had grabbed some books out of Asher's bookcase, climbed into Asher's crib, snuggled up with him and started reading.  For the next 10 minutes, Damek stayed with Asher, reading story after story, talking to him, snuggling him, until I could get in there and finish up the bedtime routine.

These are the moments I love as a mom.

Monday, October 15, 2012

Learning Contentment

For those of you who have never been a parent of a child with special needs it's important that you realize the emotions one goes through are very similar to the grief process.  There is never a time when you can say, 'I am completely okay with my child having these defects/disorders/struggles.' You may come to a place of acceptance for a time and then, out of nowhere, like a mac truck, the pain and sorrow will just hit.  And the tears come or the muscle tension or a feeling of being overwhelmed and you wonder what in the world just happened.

Yesterday I was out for a run.  It was a beautiful fall afternoon.  Just lovely.  I am happy, lost in my thoughts, listening to the rhythm of my footfalls when, from around a bend in the path, a little boy about Caedmon's age comes racing as fast as his legs could carry him.  He's zig-zagging all over the place as his mom tries to reign him in and get him out of my way.

I smiled, I couldn't help it.  He was cute, and he reminded me of my kids. 

But then I was surprised by a deep pain in my chest.  Something I hadn't felt in a long time.  I started to cry, thinking about how that should be Caedmon, running as fast as he could make his legs move, jumping with both feet into the middle of puddles, chasing his brother and actually being able to catch him, not falling over when a breath of wind pushes him just the wrong way.

It's just not fair!

Why our son?  Why Caedmon?  

Why Asher?

A song started to play in my head:

   This is not how it could be
   This is not how it should be
   This is how it is
   And our God is in control

   This is not where we planned to be
   When we started this journey
   But this is where we are
   And our God is in control  (Steven Curtis Chapman, Our God Is In Control)

I learned fairly early on in this journey that the more I held on to my little child-self crying, 'It's not fair!  Why?!', the more miserable I felt. 

But the moment I could accept that this IS.  This is my reality.  This is truth.  That was the moment I could start to feel joy.

Of course, it sucks sometimes.  It just does.  And there are times when I don't want to accept it.  But this is when I realize that I need power outside of myself so I can get back to that place of peace, of contentment.

It reminds me of Philippians 4:12-13:
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry,whether living in plenty or in want. I can do all this through him who gives me strength.

And because of this, I can look at my beautiful son and see an amazing, thoughtful, helpful, considerate, loving boy and not the defects or difficulties.

And I can walk through this journey with him, learning with him as we walk through all kinds of new things together, and I can get caught up in the magic of even the most mundane of things.  Because my focus in on now.

This is how it is.



Caedmon's gait analysis



Wednesday, September 19, 2012

Truth, it'll getcha every time

Now that Asher's schedule is more predictable it's become easier to incorporate regular family life into his day to day routine.  One thing we love to do is to have a little family worship time every evening.  It can be a short Bible story, some kind of object lesson using play items around the house, time around the fire in the backyard, a song, in other words we try to mix it up a bit.  We always end the time with a short prayer, praying for anyone we know of who needs a little extra at the time.

The last few nights, when I've asked if anyone would like to pray, Damek has gotten really excited, 'Me, me, me, me!'

And then he prays a beautiful prayer . . . for Asher.

Last nights prayer went something like this: Dear God, please bless Asher.  Help him to grow really strong and full of love.  Amen.

A little later as I was rocking Asher to sleep, I kept thinking about that prayer and repeating it, agreeing with it, asking God to really touch our little Asher.  It suddenly struck me really hard that I have not prayed over Asher the way I have prayed over Caedmon and Damek.  I have prayed for him, I do every night when I rock him, and I have definitely prayed through every hospital stay, but not in the same way.

Why is that, I asked myself.

Could it be that in my mind Asher's future is so murky because of his disability that I don't know what or how to pray for him?  Could it be that I am not expecting much because I don't want to be disappointed with what that future is?

Gah!  How could I, his mother, the mother of TWO children with disabilities, have bias or prejudice while praying?!  Of course, prayer has an amazing way of showing us what is really in our hearts, drawing it out into the light.

Isn't that how self discovery works though?  Being open enough to realize the dark places in you so you can allow light to shine on them, then they are not so dark anymore and they can be worked on?

I'm very grateful for my children.  For the unbiased love they have for one another, for their openness to God, and for the way they show me myself, ugly and good.

And, God BLESS Asher, every aspect of his life.  May he grow to be the man that You created him to be.  Help me to be the best possible mother for him so that he can be more than I ever hoped or imagined.  Amen.

Thursday, September 6, 2012

Busy Summer!

How does time go so quickly?!

This summer has been a great one!  Asher is sleeping longer and more consistently, Damek has started reading like a pro, Caedmon is doing more and more things for himself.  Part of the joy of parenting is watching your children grow and develop. The privilege of getting to know them is quite an honor.

Over the last two weeks we've celebrated Damek's 7th birthday

and cheered him on through the first week of 1st grade.

Damek decided that he wanted to spend some of his birthday money to buy a Bible (a REAL Bible, Mom, not a kid's Bible!)  He insisted it had to have a bookmark and be only so big.  In other words, he wanted one just like Daddy's.  So, we took a trip to the local Christian bookstore.  There is a dizzying array of Bibles out there!  It took quite a while but he finally found just the one he was looking for.  It was even red (his favorite color).  

Since he bought it two weeks ago, he has read through the first four chapters of Genesis and the first chapter of John.  He follows us through the house, asking whoever is around if they would like to hear the Bible.  How do you say no to that?  It is awesome how excited he is to read it.  I truly love this boy God has blessed us to be parents of.

Saturday, August 11, 2012

Determination

Caedmon has the kind of personality that says 'I WILL do this thing, I will find a way to do it, and nothing is going to stop me'.

As parents this can be a bit frustrating at times.  Like the times when he decides throwing loose, dry beans into the bottom of the oven is cooking or when he throws playing cards/puzzle pieces/legos all over the room or he draws with a marker all over his carpet.

But, while it is difficult there are beautiful things that go along with it too.  Things that would be lost if we failed to see what a gift God has given him in this drive to accomplish and tried to punish it out of him. He has helped us to see that children have wonderful characteristics that, as parents, we are to help and hone, not squelch and hamper in the name of discipline.

The beautiful in Caedmon is watching him do things he wasn't 'supposed' to be able to do: walking without aid, climbing, jumping, mowing

Today at the park, he wanted to play in the little playhouse.  It's his favorite thing right now.  He pretends to cook or clean or work on his computer.  Today, though, there were three older boys who did not think he should get to join them.  One of them said, 'He wears a diaper, let's not play with him!'  Another boy stood at the entry and put both arms up to block any chance of him getting in.  

Caedmon would not be deterred.

He invited them to help him cook supper.  He asked them if they wanted to play.

One of the boys started punching the air in front of him.

He doesn't have an older brother for nothing.  He didn't even bat an eye.

'Why you doin' that?' he asked.

'You can't come in!' the older boy said.

'I don't wanna come in.  Why you do that?' he asked again.

He kept talking until the boys started to tire in their rejection.

Just for a moment, the boy at the door was distracted by something across the playground and before you could bat an eye Caedmon had ducked under the boy's arm and sat himself on the bench inside.

'So, what you wanna make for supper?' he asked.

I love this boy!

Facing down prejudice and meanness already.  I have not yet met someone who can resist his smile and love of life for long.  He is joy and love personified.

He is also the poster child for persistence.


Monday, July 23, 2012

Perspective

When Caedmon was 10 months old I ran my first half-marathon.  That's 13.1 miles. I am very proud of that.

Today, Asher is 6 months old.  I struggled hard to complete 3 miles.  But I completed it.  Even with the humidity stuck up on our energy efficient windows yelling at me to stay inside.  Even with my body whining that the baby woke us up at 5 AM, and this is no way to start our day.  Even with the slap in the face from the heat as I walked out the door.  I got out the door and I ran and I completed it. I am very proud of that.

God teaches me lessons on perspectives a lot.  I will not always be in this place at this time.  I cannot compare this moment of my life with any other moment because life changes, circumstances change.  If I spend all my time trying to cling to the past I will have no joy for this moment.  I will be stuck in yesterday.  If I try to beat myself up for what I did then compared to what I can do now I will do nothing.

And doing something is a hell of a lot better than doing nothing.

That is my running mantra.  That is my mantra for life.  That is my kick in the pants to get me off of the couch on the days I want to do nothing.


Thursday, July 19, 2012

Kids Are Good Teachers

Asher has been home for a week and is doing very well.  He had a checkup on Monday and all things are normal.  His sodium level raised to the normal level over the weekend and he gained a pound in 2 days.  On Sunday he started to show his old self again, smiling and laughing almost nonstop.  It made me realize how much I had missed him over the last few weeks.  And how sick he had really gotten.

It also made me think about how grateful I am to have all of my boys and how much I have learned from my them. And to celebrate the first six months of having Asher as part of the family.

Damek, my first born and amazingly bright buddy of mine.  Being my first, he's taught me how to be a mom, how to apologize for the many mistakes I have made since he came into my life, how to enjoy the simple things and brush away all the crazy stimulation our world has in it.  He has helped me to realize how quickly the years fly by and how to enjoy every special moment and hold it in my heart.



Caedmon, my daredevil extraordinaire. He has taught me to celebrate and take delight in even the little things. And to not take for granted the amazing intricacy of how our bodies move and function.  He has taught me to try harder when I want to quit. Most importantly, he has taught me that beauty is a matter of the heart's response and the growth of love and has nothing to do with the outward appearance of something.


And Asher.  My heart has grown and I have found love multiplying exponentially with every child.  When Asher smiles, when he laughs, my heart fills so much I think it will actually burst.  With one smile, he makes everything disappear but the joy of that moment in time.  Through him I have learned what true, pure joy is.  I wish everyone in the world could spend one moment with him so they can understand what God created every human to be full of.  Asher is what Jesus meant when He said, "I have come that they may have life and have it to the full!" (John 10:10)



Wednesday, July 11, 2012

Hospital Stay, Take 3

Our sweet Asher baby is back in the hospital. He'd been throwing up for a few days when I took him in to see our regular doctor. She thought maybe it's reflux and prescribed some medicine.

The throwing up got worse. One day it was every single time he ate. 


We took him back to his doctor she said get him to Children's, I'll tell them you're coming. He's been there for 2 days so far. 


We know he has a severe infection. They put him on the 3 most powerful antibiotics. We know his sodium was so low that he should have been having seizures. They think it was from all the throwing up. We know his kidneys are still enlarged. Tomorrow he goes in for another ultrasound to see if there is a blockage there they missed the first time. Even if there's not, we know his ureters are small so it may mean surgery to enlarge them. We won't know much more until tomorrow. 


 In the meantime, he is eating, he has not thrown up since the first round of antibiotic was given, he has been moved out of ICU, he is more awake and alert. He is also in pain. The doctors think it may be a reaction to the antibiotics but I'm not convinced. I think his kidneys are hurting him. 


I am thankful for the thoroughness of the doctors, for dedicated nurses who help you laugh, for all our friends and family who continue to pray and check in, for tiny bottles of baby shampoo so I don't have to wash with the hospital hand soap, for all of our boys taking it in stride, for my husband who takes a night shift every once in a while to give me a break, for my bed that I am now going to go fall in.

Friday, July 6, 2012

Take THAT, Spina Bifida!

Caedmon has loved swinging from the very first time he ever sat in a swing, it's the first thing he wants to do when we go to a playground and he couldn't understand why only Asher got to sit in the amazingly fun looking baby swing in our living room.  

So, when we found a craigslist deal on a small slide and swingset he thought it was better than Christmas.  Of course, I couldn't drop everything every time he wanted to go out and swing, because that would be All. The. Time. 

When you are an independent, determined boy, this is good motivation to figure things out for yourself.  Throw in a daddy who hasn't quite gotten to building the steps to the slide and you have the formula for lots of fun and a palm heal strike to the face of spina bifida.

This is Caedmon saying, 'Take THAT spina bifida!'



So you can fully appreciate this video, before this swingset came into our lives Caedmon could not walk up a slide, pull himself up onto a swing and did not know how to get himself and keep himself going.  Ha!

Friday, June 15, 2012

God Really Loves You!

Well, and me too.


It's so easy to get into a downward spiral of pity and sadness.  You can go on for days, weeks, years, looking at all the misery in your own life and in the world. You start to be miserable. You start to wonder why all these horrible things are happening to you. You start to doubt that God is actually a God of love or mercy.  You start to covet other people's happy lives. 


The funny thing is, what you don't realize is that some of the same people you are coveting are coveting you right back.  Because, the sad thing is, when you start to dwell on all the darkness it blinds you to all the wonderful things of light you actually do have.


A few days back I decided I was really tired of the downward trend my mind had been taking.  I was ready for a new start.  I didn't feel a bit of joy in it but I chose to start thanking God for any little thing I could think of.  


Thank you that I have a family.


Thank you for my kids.


Thank you for my husband. 


Thank you that I live in a peaceful country and neighborhood.


Thank you that I have food in my kitchen.


I think I stopped there.  Obviously my list is pretty shabby and surface level but it did get my mind out of the muck of pity for a bit.


I decided that every time I went into the bathroom I had to think of something new to be thankful for.  


One time all I could think of was: thank you that my body works to go to the bathroom.


Sigh.


The next day I got a call from a gentleman who goes to our church.  He asked if he could take a look at our car that has a million miles on it and is not safe to drive.  


Sure. Why not?


He came over and started working.


At the same time, Asher's physical therapist came over for her monthly visit.  Asher was sleeping so we just chatted for a bit.  For some reason, Caedmon's trike came up.  A friend gave it to us a year ago and he has never been able to use it. We have taken it to several bike shops trying to find straps to hold his feet on and have never been successful.  It's been so frustrating!


Oh, says the PT, I have something at my office that would work.  Can I take it with me and bring it back tonight?


Wow!  Okay, sure, why not?


A few hours later I get a message from a friend.  I have some stuff my son doesn't need anymore, can I bring it by?


Sure. Why not?


The weekend mechanic knocks on the door.  He's spent 4 hours with my piece 'o crap car.  I think it's good to go, he says.  He gives me some receipts for some parts he had to buy, totalling less than $30 and refuses to take any more for his time and work.


An hour later, Caedmon's trike is sitting on my front step with blocks and straps for his feet.


A little while later there is a large bag of clothes and other items for my oldest that we've been needing to get him.


I started to cry.


Not because I got a bunch of stuff.  Anyone who's been following God for any amount of time knows He does not operate like that.  


However, my love language is acts of service.  It is how I most understand that someone loves me.  I look back over the last single day of my life and I realize that all these people were spoken to by God and answered His call to help my family out because He loves me.  Because it was important to Him to show little old me that He wasn't giving up on me regardless of my close embrace with darkness.


It's pretty humbling to think that God would do so much just to show His love for me.  It makes me think He must love me an amazing amount.


And, just so you know, He loves you that much too.

Thursday, May 24, 2012

Happy Anniversary!

Once upon a time, a long, long time ago, a boy asked a girl to be in his college English study group.  The girl accepted and gave him her phone number.  Somewhere over the course of the next few years they started dating, fell in love, got engaged, then married.


That was 14 years ago.




To celebrate this momentous occasion the boy had an amazing night . . .
sleeping on the couch in the basement to calm the freaked out dog as 5 million thunderstorms went past the house.  


The girl woke dark and early to a romantic . . .
scream for help down the hall and a bloody nose in bed, 


which resulted in a party . . .
since the baby awoke to the hoopla and frolickery, ready to celebrate. 


The grand finale to this amazing morning was the boy gracefully and gently caressing . . .
a pair of pliers as he broke a plastic ring off a swollen finger, as it started to bite into the skin.


What will the rest of the day hold?  


What will the next 14 years hold?


It is all conjecture but I think it's probably true that it will be just as eventful and exciting as this morning was.  Maybe even more so.



Saturday, April 28, 2012

The Road Less Traveled

Sometimes in life you feel led to take the road less traveled. And as you are rolling along, enjoying the view, difficulty or hardship . . . or a deer . . . will hurl itself at you rendering you motionless for a time.






When this happens you have a choice to make: lay down and cry or dance in the road, since it is less traveled, and enjoy the sunset, the birds singing, the cows calling and the deer running off through the fields with her family, apparently completely uninjured.















And then go play.

Saturday, April 14, 2012

Asher's Exciting Week

What a crazy week we have had!

On Monday night, Asher started grunting and straining constantly. When he ate it was voraciously, like he was trying to stop something from hurting. He slept two hours at a time, waking up groaning more. We checked his temp and everything was reading normal. At 2 am I got up with him. He seemed to be in more discomfort, his straining and grunting were more urgent. When I checked his temp it had gone up nearly to 101. I woke Adam up and told him one of us needed to take him to the ER. He offered to go so I could get a little rest.

Asher was admitted to the hospital with a possible diagnosis of pneumonia. He was put on a 48 hour antibiotic. As lab results started coming in, it seemd he also or instead had a UTI (urinary tract infection). Each shift change a new doctor would come in and give us differing information. It was difficult to put the pieces together. I missed Children's as I got more and more confused with the information the doctors were sharing.

Asher stayed one night in the hospital. He was still in some discomfort and the middle of the night was very difficult for both of us. At one point I had finally gotten him asleep after nearly an hour of crying (so unlike him!) and I was able to lay him peacefully in his crib and sneak off to the bathroom. I wasn't gone more than 2 minutes, the whole time thinking ecstaticly about falling into bed and sleeping. When I walked in the door the shift nurse was just finishing putting the thermometer away and beating a hasty retreat out the door while Asher was stirring and thrashing in his bed. I had several choice words for that nurse in my head as I exhaustedly picked my baby up again. I am so grateful the hospital did not have a police against cosleeping This was the only way either of us got any sleep that night!

In the morning, I was awakened to the news that Asher had an ultrasound scheduled and the orderly was ready to take us down, now, like right now. That was fun. Thankfully I had slept in my clothes so I was ready to set off through the entire hospital to the correct room. The doctor had the results almost immediately, one blessing of a small hospital. The news wasn't great. Asher's left kidney was severly enlarged. They would like to transport us to Children's ASAP but the doctor wanted to contact Asher's urologist at Children's first before ordering it.

I started packing our bags and letting everyone know to pray. I didn't think we even had an option that we wouldn't be going though I felt really at ease about the whole thing, like it would all be okay.

About 10 minutes later the doctor returned and said, 'Well, Dr. Ali says it doesn't look that serious. He's able to look at Asher's kidney from when you were at Children's before and though it has gotten bigger, he isn't that worried about it. He says his office will set up an appointment with you within the week and I should let you go home. Would you like to go home?'

HA! I couldn't believe it! This is one of the nicest things to have happened in all our hospital stays. I was absolutely sure we were being transported and positive Asher had to stay in at least 24 more hours because of the antibiotics. Instead, we were being offered a ticket out the door! I let the doctor know we were ready to go home. :-)

So, he is doing well. He's on a round of antibiotics here. He started to smile and laugh again, we hadn't seen those precious smiles for a few days. He will meet with his urologist early next week. He will have a procedure done to check for blockages and other information. With that we will be able to see if he needs a simple procedure done or something more serious, ie surgery.

Thank you to all our friends and famiy who have been praying for us indefinitely and especially during this time. It's never easy to have a child in the hospital and when they are so little and so dependent it makes it a little harder still.

God is so good! We'll keep plugging along and enjoying the journey!

Saturday, April 7, 2012

Current Family Stuff

It's Easter!  We are celebrating Jesus sacrifice and resurrection.  We are celebrating Asher gaining 2.6 pounds in 2 weeks.  We are celebrating family.  Here are some snapshots of our last few weeks.

Asher is so much more interactive and alert.

We were visited by the amazing superhero, Lightning Zack . . .

and his sidekick, Thunder Bolt.

Caedmon, all dressed up for Easter.  Who wouldn't love this guy?

Damek in his new hat.  He insists he must wear it backwards.

Our little rocker!

Damek loves to make up songs and  he is such a great singer, at least we think so. :-)

Wednesday, March 21, 2012

Two Months And A Miracle Of Sorts

Happy two month birthday, Asher!  We visited with our lactation consultant to celebrate. (Insert laughing face here)

A bit of background information so you can be appropriately ecstatic with me: Asher takes 45-120 minutes to eat every time he eats. Just stop for a moment and imagine that with me.  Eight times a day, I sit on the couch with him and he sucks and sucks and sucks for an hour or two, depending on how tired he is.  It takes up a lot of day and all the food he's eating is already used up because it takes so long to get it into his little body.  End of background info.

The bad news is, Asher has not gained at all in the last week and a half.  Hmph!  The LC gave us a different bottle to try and we tried, hard, for five days.  Asher hated it.  He only ate half as much with it and mostly pushed it around with his tongue.  So, I stuck him back on the bottle he's been using since he was in Children's and he started to eat voraciously.  There you go, he likes his bottle and that's it.

The good news is, the LC said why don't you use a bit faster flow of nipple on the bottle. (Insert light bulb here)  I felt a little foolish never having even thought of trying that, considering that's why she gave me the different bottle in the first place.  Chalk that up to sleep deprivation.

So, Asher and I went shopping today.  Lo and behold, when I fed him tonight he drank his bottle within 25 minutes, including stopping to burp and getting more milk to put in!  Of course, he spit up a good portion right after.  Note to self: stop to burp more often.  But still, that is pretty good improvement!  He immediately fell into a very deep and peaceful sleep.  I'm sure his little body is so happy to have all that milk in his belly without having to fight hard to get it in there!

I feel like this is a miracle for him and for me!

We haven't given up on nursing but we have to take first things first.  So, happy birthday to my little hardworker and here's hoping he'll soon have a beautiful buddha belly.

Part of the celebration, some brother love.  Enjoy!




Thursday, March 15, 2012

Choices

When it's a balmy 55 degree spring day, what do you do with yourselves?  Stay at home and wait for the snow to melt?  Of course not!


Some people would be really interested in the Coon Rapids Dam and the mighty Mississippi.  I prefer a Jedi Knight on a tree stump.



For some reason, known only to himself, Caedmon chooses Darth Vader and the Lightning Guy (the Emperor) as his favorite characters in Star Wars.  I find this hilarious.


This morning I had the option to sweep the kitchen floor or adore a smiling baby.


I chose the smiles.

Tuesday, March 13, 2012

Dance Lightly With Life

There's a counseling clinic between my house and my chiropracter's clinic. On their sign out front they have this sentence: Dance lightly with life. The first time I saw it I was worrying about the logistics of giving birth, adding a third child to the family, finances, pretty much anything I could find.

Then I read the sign.

Dance lightly with life.

I pondered it all the way through my appointment and all the way home again. It had calmed me immediately but I didn't really understand why it had such an affect on me. It continued to rattle around in my brain.

Of course, a lot happened after that and it was shoved to the back, hiding somewhere under the dust with some old colloquialisms, but on Sunday I remembered. We were going exploring to a new park that happened to be on the same route, taking us right past the sign. And there it was again.

Dance lightly with life.

And there was the happy feeling I always get when I hear something really important to my well-being and to life in general.

And I think I finally caught on to why this was so essential for me right now.

In the grand scheme of this short little time I have on earth what is it that really matters? Not spina bifida, not Down syndrome, certainly not little things like money or a grocery list! Why would I spend my limited time and energy with them?

But when I have a strangle hold on these little things I miss the beauty of the present. My dance becomes a drudgery, more of a heavy plodding. As I let go of each worry, fear, concern, I can learn to enjoy even the difficult steps.

And become the little girl, in the spring dress, barefoot in the grass, twirling in the sunlight.

Sunday, February 26, 2012

Behind My Incredible Boys Is An Amazing Father

I have learned so much about parenting and about accepting the cards life has handed me by watching my husband.  From the moment they sent me out the door of the hospital with my firstborn, and all the fear was rising up inside me wondering what in the world I would do with this tiny little thing, Adam has stepped up and grasped the role of Father with both hands. 

Our firstborn had colic for his first four months of life.  For four months Damek would not sleep longer than two hours at a time and would only fall asleep if we bounced him while standing up.  It was exhausting.  It was difficult.  It would have been impossible if Adam had not shared in the load.  He offered to take every other awake time so we could both get a small chunk of uninterrupted sleep.  He was vastly more patient than I was and kept us laughing in spite of the pain.

Our second came along with many more complications than mere colic. Caedmon was born with a team of doctors and nurses waiting for him, whisked away to a separate hospital, and was in surgery within two hours of birth. Adam did not leave his side until the surgeon came to take him and was waiting for him the second he was placed in recovery.  He asked to be the one to go to myriad medical appointments, clinics and procedures. Multiple times the medical staff would comment with surprise that the father was there.  "We never see the fathers!" they would say.  The first few weeks of Caedmon's life, when I was struggling with my emotions at his obvious deformities, the stress of his seemingly neverending procedures, and new baby adaptation, I would see Adam treating Caedmon with total love, devotion and acceptance.  That dedication got me through many long nights.

And now that our little Asher has joined us, the same love holds true.  Adam has been a constant support, showing acceptance, love and compassion from the beginning.  He did not bat an eye when the diagnosis of Down syndrome was given, he just did what he does best as a father.  Picked him up and loved him. I'm sure he has had some fear, some doubts, some questions, but they haven't gotten in the way of his love.

His constancy makes me a better mother.  It also makes me understand God a little more.  How God sees the imperfection, in some cases the mess, in us and just picks us up and loves us with all the love He has (which is pretty immense!).  How He sees past a diagnosis or a label, because He's way bigger than that anyway, and sees the reality and the potential and is just happy to BE with us.  You know, BE, just sit, just hold, just spend time and see how the story turns out, see how the journey goes.  And how God looks forward to the time when He can have a little play time with us.


Thursday, February 23, 2012

Tuesday, February 14, 2012

Asher's Birth Story Part 3: Falling In Love

I was discharged from the hospital first thing in the morning. Adam filled me in on all the details of Asher's first night and news from the doctors as we made the 30 minute drive to Children's. I was feeling numb and nervous.

Asher had been on oxygen since he first entered the NICU. Sometime in the night they weened him off and he had done fine on room air since then. He was on the antibiotics and was halfway done. Adam and I were thinking he would just finish that up and we'd be home tomorrow. The doctor had informed Adam that Asher was dealing with textbook DS symptoms but we wouldn't have the chromosomal study back for 72 hours. We prepared ourselves for a positive result, meaning he did indeed have Down syndrome. I was prepared for a very short stay.

Coming into Asher's room and seeing him hooked up to all the equipment with the iv in one arm and that hand all bandaged up, all my emotions from Caedmon's hospital stays came flooding back. In fact, it was several days before I quit calling him Caedmon by mistake.

More importantly, seeing him, being able to touch him and smell him and hold him, did what a night by myself could never do: see Asher as a baby, my baby, my sweet boy, and not a diagnosis.

The next morning brought the doctor and it quickly became apparent Asher would not be discharged that day and probably not for several days more. His problem was he was too sleepy and had no interest in eating, again textbook for a large baby with DS. I gave my consent for a tube to be placed down his nose into his belly so he could be force fed small amounts in the hopes that the milk would give him the energy to wake up and eat for himself.


The days turned into a week and then more. Nurses kept saying to me things like, 'I'm not scheduled to work again until next Friday. I'm sure you'll be home by then.' At first I would get really excited about the prospect but as time kept going on I started to grimace and say, 'I certainly hope so but I'm not betting on it.'

Amazingly, as the second week started I began to be more positive, not that we'd be discharged but just about life in general. I credit several things to this change.

First, my very aware husband told me I needed a break from the hospital. I had not even been outside for a week and did not realize how much this was effecting me. He said he wanted time with Asher too. Since we were focusing more on bottle feeding, he could trade off with me, taking every other night, so I could go home and be with my older two boys and get a little more sleep.

Second, we had so many people praying for us. I sensed it with Caedmon's journey and now with Asher. This overwhelming peace and Presence even when we had no strength or energy to pray for ourselves.

Third, every time I held Asher and we worked on nursing or bottling or we just cuddled and napped, my heart grew, like the Grinch on Christmas Day who realizes Christmas is so much more. I loved the moments when he would open his eyes and look at me. I anticipated seeing him when I had been away for a night. I loved how his body would sink into me when I would hold him. I started to let go of the future, even the near future of when we would finally get to bring him home, and try to enjoy the quiet of the hospital room where I could focus solely on him for this brief time without the cacophony of noise that comes with siblings.

In short, I fell in love with my son.

It was an amazing realization when our second son was born and we worried that we could never love him like we loved our first, yet our love just multiplied to cover him too. The same was happening again, diagnosis be damned, and our little Asher took our hearts by storm.

By the time we got the okay to head home, exactly two weeks after being admitted and on his due date, I was ready. I was ready to bring my son home, ready to introduce him into the family, ready to face whatever his journey would bring, ready.

This doesn't mean I am completely through grieving or totally okay with everything. I am not disconnected from my emotions! I know that every developmental stage will bring fresh grief and new opportunities to grow and let go but with a deep basis of love and trust I have learned I can make it through a lot.

So on we go.

Sunday, February 12, 2012

Asher's Birth Story Part 2: Transport

My biggest fear in deciding to have a homebirth was having to be transported to a strange hospital and being treated horribly by the doctors and medical staff because my decision was deemed stupid or dangerous or crazy. It seems, in my life, God takes delight in helping me face my biggest fears and guiding me through the fallout.

When Asher was born the midwife handed him right to me. I was completely spent, collapsed over the birth ball that I had finished up labor on, so the midwife handed Asher to me between my legs. Such a strange perspective. He was so floppy and blue. His eyes were still closed. There was no newborn cry, no noise of any kind coming from him. These things didn't register until the midwife's head appeared from the side and she started blowing air into Asher's mouth. Two puffs, three puffs. I heard Adam say, 'Come on, Asher, breathe buddy!' It slowly started to sink in that things weren't going exactly according to plan.

With the fourth puff, Asher started to respond. But not in a robust, 'here I am world' kind of way. More just a moaning, grunting kind of way. The midwives, doula and Adam got me situated sitting at the head of our bed and handed Asher to me. As I held him the head midwife did a checkup on all Asher's vital signs. From somewhere far away I heard her tell the apprentice that she needed to call a transport.

Oh, dear God, I just had my baby! All I wanted to do was curl up with him on my bed and take a nap. In fact, that was how I got through transition, the time in labor when you feel like you cannot go on. Now they're saying I have to take him in an ambulance to a hospital?!

As we waited for the paramedics, the midwife, Aly, who I finally met, continued to check Asher's heart rate and respiratory rate. He improved some, enough that she asked the paramedics if they could just wait a few minutes before we made a final decision.

At this point Aly checked me and found a fairly large tear that could only be taken care of by a doctor. Asher was not rapidly improving. We prepared to head out to the ambulance.

There was some tension between one of the paramedics and Aly. The paramedic refused to allow any of my birth team to ride in the ambulance with Asher and I. I wasn't concerned about that but my fear began to rise wondering if this was indicative of what awaited me at the hospital.

I was grateful that they laid Asher right on my chest in the ambulance and purposefully moved the blankets so we could be skin to skin the whole ride over.

On the ride to the hospital the same paramedic who had been so brusque with Aly chatted pleasantly with me. About halfway to the hospital she asked the question I would be asked many times over the next few days. 'So, why did you do a homebirth?' I gave her a shortened version of the reasons I listed in Part 1. That was the end of the conversation, we pulled into the hospital.

When we arrived, they wheeled us into a room in the ER. Adam and the birth team were there immediately and shown right in. There were three doctors waiting for us, one from the maternity ward, a pediatrician and one from the ER. Everyone was so kind and so respectful. All my fears started to dissipate.

As I was being looked after, Asher was getting his own check up, in a bed next to mine. I watched as they worked on him. Heard them say he was 10 lbs, 2 oz and 22 inches long. My biggest boy yet.

All the details bleed into each other and seem rather hazy. I have a very clear memory of someone turning to Adam and I and saying, 'We're seeing markers for Down syndrome.' Tears started falling fairly quickly. I remember Adam turning to me and saying he thought Asher looked like Damek and he didn't see anything that looked like DS. I clung to that last thread of hope, knowing how silly it was to trust my nonmedically trained husband over competent medical professionals but not caring if it meant Asher would be 'normal' for a little while longer.


'Just before Asher heads to the NICU'



Asher and I were taken separately to the floor that housed both the maternity ward and the NICU. Adam came to tell me that they were wanting to put Asher on antibiotics for 48 hours due to high white blood cell counts. We had already decided that if he needed to be in the hospital longer than a day we wanted him to be at Children's. Adam asked for a transport.

I continued on with the day's trend of most difficult moments. I was already admitted to the hospital. I could stay for the night and head for Children's in the morning or be discharged immediately. I knew there was little rest once I got to Children's. I knew I needed some recovery to be worth anything as Asher's advocate.

I made the hard choice of staying one night alone. Adam headed out following Asher's transport.

That night was the longest night of my life.  I was exhausted and needed sleep but I continued to replay the events of the day, especially the very real probability that I had another special needs child.  I cried a lot.  I felt very alone.  The nurses left me to rest, so I didn't have a lot of interruptions during my dark storm.  I questioned God a lot.  I doubted I would be able to love this little stranger who just appeared with so many unknowns, so many needs.  I wanted to run away. I grieved. I felt picked on.

At my lowest point a song started playing in my head.  This has happened enough times in my life that I know to listen to the words because it's some message being sent to me.  The song was Jill Phillips' Grand Design.  The specific lyrics were

I could start running in anger
But then what's the point of a Savior?

I feel the pain but it still doesn't change who You are
Nothing I feel is outside of the reach of Your arms
My whole world can crumble but all of the pieces remain
In Your hands that are waiting to put them together again

Just like I know You will, in Your own time, in Your own wisdom
One day I'll look back and see the Grand Design
Maybe it will make sense then, these questions I have
But with it all here front and center
Sometimes it's hard to remember

With those words running through my mind, I fell into a troubled sleep.

Friday, February 10, 2012

Asher's Birth Story Part 1: Homebirth

In telling Asher's birth story I felt compelled to start with why we chose a homebirth because that has been, by far, the most commonly asked question.

There seems to be several preconceived notions that pop up when people hear that you have had or are planning a homebirth: you are uninformed or naive; you are anti-modern medicine, anti-establishment, anti-doctors; you are crunchy; you are more concerned with your birth wishes than you are about your baby's health; you're weird.

I can only answer that, while we may be a little out of the mainstream and some may tag us as strange, we do not fit the description above. In fact, without exception, the people we have met who have chosen homebirth are the most well educated parents we have spoken to on all things related to childbirth and chose the homebirth route because they are convinced it was the safest place for their baby to be born.

When we decided on a homebirth we were hoping to have our child in a peaceful environment, surrounded by people who were positive, patient and believed that a woman's body was designed to do this amazing, miraculous thing: give birth. That the act of giving birth, in most situations, is not a medical emergency that needs to be attended by a trained surgeon but is a beautiful and natural part of being a woman. We also fully believed (and still believe) that our child would be in a safer place being born at home.

We researched and interviewed several providers before selecting the one that fit our needs. This was a much more thoughtful process than my previous pregnancies, where I just blindly took the doctor in the closest practice. I had a page of questions to ask, checking to make sure the midwife would be on the same page as my family.

In the end, we went with a traditional midwife. She was a midwife through experience and apprenticeship rather than formal education and certification. She had attended more than 1500 births in over 20 years of experience. She had an air of quiet confidence and calm about her. I loved her right away.

In our state a homebirth is always attended by two midwives. I felt very well cared for and confident that if anything went wrong we would have good decision makers to get us to the right place. We also hired a doula, a birth assistant, who would be with me while I labored in the quite likely event that Adam would be busy with our other two boys. She turned out to be invaluable.

On Sunday morning at 4, I woke up to some pain in my stomach. I thought Asher must have turned a funny way or be stretching out and poking into me wrong. I turned in my bed and felt the unmistakable gush of fluids. Here we go! I shook my husband awake and told him to call the midwife. Mine was out of town until that afternoon, as luck would have it, so he called her apprentice who then contacted the on-call midwife. She asked how my contractions were and told me to get some more sleep if I could and call if things got more intense.

I laid back down while Adam flew around the house trying to fill up the birth tub, cover windows, and generally prepare before the boys woke up. I didn't actually sleep. I think I knew this would go quickly.

By 6, the boys were up and my contractions were coming harder and faster. My midwife called to check on me and I told her I was going to ask my doula to come but the contractions were irregular enough that I didn't think the midwives needed to come yet. My doula headed over.

It seemed to take her forever to get there, though I'm sure it was less than 30 minutes. By the time she walked in the door I was laboring hard, the contractions were coming right on top of each other and the only way the pain was tolerable was if I was on my hands and knees. I felt like I was already in transition but that couldn't be right, I'd only been in labor for 3 hours! The doula took one look at me and called the midwives to tell them to hurry up and get here. I told her I felt like I needed to push, she stayed on the phone with the midwife.

At some point I heard the doula tell the midwife to please hurry. I felt Adam's hand in mine shortly after. He told me later the doula had come to get him and told him the baby would be here soon. I was so grateful to have him there and the relief I felt at being able to grab his hand must be similar to what a drowning person feels when someone firmly grasps their hand and pulls them out of the water.

Still no midwife. I heard my doula tell me to quit pushing and breathe like I was blowing out candles. That was the single. hardest. thing. I have ever had to do in my entire life. I don't know how long I did that, it seemed like an eternity but was probably more like a few minutes. I heard the doula say in a relieved voice that the midwife was here and I could push again.

I remember finding the perfect 'zone'. That when I pushed from that place there would be good progress and the midwife would sound really excited. I felt like I was in a good groove and the baby would be out in just a moment. Then the midwife told me I had to lift one of my legs so that I was in a position much like the often criticized Tim Tebow. It was so hard to find that zone again. The dola was saying, 'Just one more push and he'll be out!' but I couldn't find the place to make that one more push. Onbeknownst to me, Asher had a barrel chest and the midwife was needing to shimmy him out a little at a time. I finally found one last drop of energy and with a primal scream I felt Asher slip all the way out.

It had taken five contractions and was only 8:11 am but it felt like much more.

Little did I know that would be the easy part of my day.