birthday wishes…

December 31, 2009

some pics from our balloon release…

it went pretty well and surprisingly even kind of fun.  the kids loved it.  I’ll have to write more later.

I have gotten news of your balloon launches too… some from the beach and some with cards and some with snowflakes tied to the tales.  thanks so much for celebrating with us!

(just so you know… our pictures were taken by a very talented and kindhearted woman who I wish I had never met.  she was the one who took luke’s pictures on his birthday last year.  what a blessing she has been to us.  if you need a great christian photographer with a huge heart, look her up. )



I’ve been trying to figure out how to say this for days…  it isn’t coming to me.  not in some nice story type fashion anyway.  nothing fancy, just me pouring out some words.  so here it goes.

after much deliberation we’ve decided we will go out for lunch tomorrow to celebrate luke’s life.  that is what the kids kept picking on a regular basis, and I guess it makes sense.  we go out to eat for everyone else’s birthday.  after that we are going to go get some balloons.  a lot of balloons.  all shades of blue.  we’re going to write little notes and messages, probably lots of luke 12:31, and then let them all go.  we’re sending them up to heaven if you will.  maybe this is silly… I don’t know.  maybe it’s just as okay as any other thing that we could think of.  anyway… that’s the plan.

now here is my special request.  I’d love for you  to send a balloon too.  I’d love to have a picture of you sending the balloon.  I don’t care if it is today, tomorrow, next week or even in may when you happen to see some balloons for sale.  it is just a little something that says I’m thinking of you.  I can’t wait to meet luke.  don’t feel obligated.  really.  I know this isn’t everyone’s kind of thing.  that’s okay.  I just wanted to extend the invite to those of you who might want to participate.

much love to you my friends… who continue to love me, carry me, calm me and encourage me.  I wouldn’t have made it this far without you.  without you and a good deal of grace.


you can send the pics to  … thanks again.  I’ll post them to share.

You took away my clothes of sadness, and clothed me in happiness.   Psalm 30:11

I’m putting my verse first tonight, because I know that I won’t be able to get into words what I feel… but the verse is pretty close.

christmas wasn’t really fun.  I was pretty down.  but the last 2 days, I feel a little better.  even though I realize luke’s birthday is just a few days away, I’m realizing that a day  doesn’t mark the end of sorrow.  it isn’t like I’ll wake up on friday and be over it.  it isn’t like the kids will stop talking about him or I’ll stop finding his blanket that gets drug all around by everyone.  that will all be the same.  at some point, I’m going to have to keep moving, pull my self up by my boot straps, buck up if you will… or… … …

admit my failure to do this by myself.  go to the One who can do it for me and ask for His help.  except the days of sorrow along with the days of joy.  somehow, I think it is very possible to be clothed in both.  like a double lined robe.  I can wear my sorrow close to my heart, sharing it when and with whom I wish and at the same time let the joy of Christ be my outer garments… hopefully letting the majority see Him and not myself.

thanks again for listening.  there is a great relieve for me to be able to say  what I am honestly feeling and receive bits of encouragement back from all of you.  somehow, getting it out and in front of me helps it make more sense.


December 26, 2009

here they are.  my monkeys… with one stand in.  luke will be represented by the little white monkey in family pictures.  somehow… that makes it a bit easier.  and, no one really needs to know right?  I don’t have to explain it when someone is looking at a picture.  I can just nod and say, ‘yeah, they are pretty cute.’.

anyway.  this is our tradition.  every year on Christmas eve we get to open one package.  it is always pajamas.  flannel pants from llbean.  they are so soft and cozy and that’s just what we do now.  I have taken a picture on christmas eve with everyone in their new jammies every since gabrielle was born. 

I hope that your Christmas was filled with love and joy and peace and tradition.

it was a pretty nice day.  all this fresh snow, fairly warm temperature, snowboots.  neighbors, snacks, games.  fresh sugar cookies, homemade buttercream frosting, red hots.  and then… it was bedtime. 

gabrielle just fell to pieces.  ‘I just wish we had luke with us.’ …  ‘I just we could call him in heaven.  I’d call him everyday when I got home from school.’ …  ‘how can we have christmas when our whole family isn’t here?’ … ‘I just wish I could have my baby brother here with me.’ … ‘I don’t know how I got so sad!’ … on and on it went.  for an hour. … not the christmas eve I expected or wanted. 

 I guess that saying, ‘if mama ain’t happy, ain’t nobody happy.’, is true.  I’ve been trying to maintain the status quo.  trying not to cry in front of the kids.  trying not to say sad things all the time.  I guess there is just a feeling in the air.  they pick it up too.  I’ve been able to tell with dawson also.  he’s been hugging me alot lately and telling me that he loves me. 

we’ll see how we do over the next week.   pray for peace and joy.

another day down…

December 23, 2009

well, here it is bedtime again.  I made it through another day.  there were a few moments that tripped me up, but I did all right.  honestly, I thought of the little gifts of love that were waiting for me at home and it helped a good deal. 

the first tough spot of the day was while I was helping at the kindergarten Christmas party.  I was helping with the snowman darts, just sitting on the floor and talking with all the little people when this little blondie came skipping around the corner.  I thought he was a cutie.  as I was thinking of how cute he was in his little  dark blue track and field sweat suit, one of the other little boys said, ‘hey luke.’. … … …  I glazed over and forgot where I was and what I was doing.  I wanted to pick him up and just hold him and cry, which would have been really wierd for him and may cause my name to get scratched off the volunteer list.  so I held back.  I stared as he played and then he was off to the next activity.  it took me a few minutes, but I gathered myself and finished my round of darts.

one of the other tricky moments was tonight when we were eating supper.  we were playing a game of ‘raise your hand if’.  someone said, raise your hand if you have brown hair.  cole and I raised our hands.  then gabrielle said, raise your hand if you have blonde hair.  then she said we win.  raise your hand if you’re a girl.  raise your hand if you’re a boy.  dawson says, ‘boys win.  we have four.  daddy, cole, me and luke.’  brian just looks at me across the table… his eyes hurt for my hurt, I can tell.

finally home, with the kids in bed, I decide to open another present.  it is a book.  I love books!  a devotional called, ‘streams in the desert’.  one I’ve heard of but don’t own.  I’m excited to have it and to read it daily.  part of my trying to be more orderly and to go to Him first thing in the morning.  yeah!  thanks.

I’d like to get to the point where His goodness does not surprise me.  I don’t know why it does.  how He uses others to do His work.  how He always shows up at the exactly right moment.  but, like all the other Israelites roaming in the desert, I seem to forgot the sweet manna that was provided me just yesterday.  the perfect amount to carry me through that particular day.  another prayer for me to add to the list.

so, here we are, another day down, another lesson revisited.  I’m thankful again for the bits of love that helped me through.

 … …

oh. and I forgot to mention that each package has a verse on it.  today’s verse was…

Not to us, o Lord, not to us, but to your name give glory, for the sake of your steadfast love and your faithfulness!

Psalm 115:1

a box of encouragement…

December 21, 2009

wow!  look at this!  someone left a box of gifts, ‘little tokens of love and comfort’, for me at our front door this evening!  they are to celebrate ’12 days of luke’… which is just perfect.  enough to get me through christmas and then still carry me through until his birthday.

receiving this box has really brought me joy.  a true warming of the heart.  I have had a smile on my face ever since brian carried it in. 

this is a gift that took some thought.  some time to prepare.  some effort to get ready, wrap and deliver.  … and all of those things mean just as much, if not more, than the actual 12 gifts.  there are many times when I wonder if anyone sees me.  do they know what I’m dealing with, do they ever think of me?  I don’t know why I do that.  I don’t want to do that.  I know in my heart that there are many who think of me and love me and continue to pray for me.  I guess it is part of this sinful flesh that wants me to keep focused on me.  but now this.  wow. … … 

again, this gift has been anonymous.  I hope that I can be as good a friend as this person is.  I’m not even sure who it is, but what a treasure.

it feels good to be loved.  it is nice to know that there is someone out there who is aware of my loss and continues to pray.  a friend who is kind and caring and willing to go the extra mile to demonstrate love.  (my love language being gifts, this person hit the nail on the head!)

the first gift I opened tonight was a beautiful snowflake ornament.  …  the sadness did not come, but encouragement to continue on.  thank you dear friend.  your thoughtfulness has made a difference.

I’m just not that into it.  I don’t really care about the tree, the cards, the presents, even the singing.  I mean, I am enjoying them… but on a new, very superficial level.  maybe more like a silent observer to everyone elses madness.  you could take it all away and I don’t think it would affect my day much.  even my kids are strangely subdued.  they didn’t even say anything about the fact that there were no presents under the tree until just this saturday, and that was really only because they did some shopping of there own for brian and I.

a year ago I was hoping with all that I had that luke wouldn’t die on brian’s birthday.  how would any emotion ever top that at this time of year? … ‘please don’t let the baby die, please don’t let the baby die’  that was all that was in my head.  and now…  I guess I’m just still sitting here stunned.  it makes stocking stuffers seem pretty insignificant.

I have to say though, that as I am looking around trying to find the blessing in this, I keep coming back to the same answer.  Christmas was never supposed to be about all of those things anyway.  it was never supposed to be a burden.  it was never supposed to be a secular, commercial industry event. … … it is all about the one baby boy who made all the difference in the world.  He came into the world so poor and meek and yet would save all that would only believe on Him.

so, I guess having Christmas stripped bare may not be such a bad thing.  maybe even something that we all need in our lives.


December 20, 2009

we recently watched UP.  it is a good movie.  I would recommend it.  I like that it is a little more real…  not all rainbows and fairy tales.  whose life is?  it does end well, and I’m happy about that too.

I had to post this clip for you in case you hadn’t seen it.  of course I easily project myself and brian as ‘elle and carl’.  how she’s always talking and how he is content to listen and just be with her.  and oh how it breaks my heart to even think for a moment of us not being together.  the only way to calm myself about that dreaded moment, that will surely come, is to remember that we will be in heaven together.  we will be best of friends and get to do all of those things we weren’t able to do here.  we’ll even be able to be with luke… our whole family. 

anyway, if I’ve ever seen a life together documented so well, it would be this video clip.  I hope it makes you appreciate the adventure that you are on at the moment.  I hope it makes you think of a life well lived.  I hope it makes you appreciate love.  … 

a gift…

December 16, 2009


a little gift I received tonight from brian’s mom…

I love it.  it’s hard to find words about it though…  not really a gift I want to be getting.  but then, I do appreciate that others remember luke too.

I really like the look of complete peace on the boy’s face.  it’s comforting.  to force myself to remember that he is not stressed.  not upset.  not crying for his mama.  wondering when she’s gonna get there.  (well, maybe he is wondering when I’m gonna get there… but more in an excited way)  he is at peace.  that makes me feel a little more at peace.  a little.

I C U…

December 15, 2009

it’s been a long couple of days.  cole had to get his new braces fit, which takes quite awhile and he also had to have an EEG done to monitor seizure activity… a sleep deprived  EEG.  this means we had to keep him up late, like 12:30, and then wake him up early, like 5:00.  needless to say, we’re a little wiped out.  thankfully, the neurologist didn’t see anything suspicious and is not all that worried about a new batch of seizures coming on. 

so, as cole and I were walking through the hallways of the hospital today, half-dazed, between tests, trying to find a ‘doughnut’, I saw the ICU sign.  and my mind immediately went to a devotion I had read yesterday morning.  it was about God knowing my name… your name… every single persons name.  I have to say I was comforted.  as I read I. C. U., I thought I know You do… and I’m so glad that You do.  I thought, as I sat in that big brown recliner trying to balance a sleep deprived 12-year-old with spastic limbs and 2 dozen electrodes glued to his head and the nurse turned on a cd of lullabies, with ‘baby mine’ being the first one to play, and I had to hold it all in… … He saw me.  as cole looked at me on the verge of tears and the biggest frown because the nurse was trying to scrub the glue off of his tired little head He saw him too.  as brian went about his busy day of work so he can pay the bills and keep his family fed, God knew right where he was.  while dawson sat yawning at his desk with his oversized sweatshirt on and tapping out some beat with his pencil eraser, there was no surprise to our sovereign Lord.  when gabrielle played carelessly all afternoon with her friend, eating snacks, playing wii, throwing the ball for the dog, God had his eyes on her.  as some dear friends of ours watch a little white kitty wander around and check out her new home that they have welcomed her into… a safe and loving home that is about as good as it is gonna get for a last-minute kitten, or even a planned out one at that, God sees each one of them. 

I am so thankful for this big and awesome God.  One who is always in control, never lets anything slip by, using every little thing for His purpose and His glory.  I am so awed by the fact that He does  know my name… that He does  see me in all of my comings and goings.  I’m so humbled that I know Him… that the veil has been lifted for me… that I know his voice.

thank you.

thank you.

John 10:14

I am the good Shepard; I know my sheep and my sheep know me-

here’s what I learned this weekend.

trying to find a gas station that has an accessible bathroom is difficult.  so, traveling with a 12-year-old that is learning to go potty and uses a wheelchair is difficult.  it looks like the best option we have for going pee while on our way to meme’s is in worthington at the blueline truck stop.  something you may want to be thankful for next time you travel… the ability to stop at the next gas station, whatever it may be, to use the bathroom.

I got a kitty while we were home.  she’s beautiful.  long hair.  white.  the kids were super excited to go into a real barn, with real animals and pick out a kitty from the whole mess of them running around.  I was  excited about this.  of course, I knew way beforehand that this was going to happen.  I was looking forward to it for days.  …  then we got home… and

I just cried.

I don’t really want a cat.  I want a baby.  up until this point, I had been doing well with avoiding getting any small, warm and wiggly creature that might fill a void.  I don’t know what happened this time.  I caved.  now what? 

here’s where the love comes in.  brian asks if I want him to take it back.  as I am laying in bed, crying,  just like a year ago, brian says he can take her back right now… at 11:30 at night. …  back to a little barn in iowa some 5 hours away.  and I know he would have if I had said yes.

we’ll see. we have a busy week and we’ll just have to see if having a kitty will work.

that was my weekend.  as always… thanks for listening.  (I’m open for advice too)  : )

“I love this…”

December 10, 2009

cole had ‘surgery’ this morning.  his usual botox and phenol.  let me tell you why I’m glad that’s over.

cole has been saying, “guchi” and “hospital” for days.  he also likes to say “only paws”  and “goofy.  ella.  stay home” and “dado.  hold me.”  it may not sound like much, but after hours of ‘goofy. ella.  home.’  I’m about ready to go crazy.  let me interpret for you.

‘guchi’ is his doctor.  dr. tanaguchi actually, but cole just calls him guchi.  ‘hospital’ just means we are going to the hospital.  ‘paws’ is his little blue kitty that he has had since day 1. really.  day 1.  he always get to go.  ‘goofy’ is the actual goofy from mickey mouse and ‘ella’ is the baby he got for his birthday.  they can’t go to the hospital.  I’m not sure why, but this is a decision he has made and he isn’t budging.  they absolutely can not go to the hospital.  and the ‘hold me dado’ (pronounced is just cole making sure daddy will be there and that he will hold cole before they go into the induction room.  cole can say ‘hold me dado’ about 60 times a minute… or every second.  it’s crazy.  we’ve gotten to the point that we don’t tell him we’re going because he is so obsessive about it.  he’s excited.  he loves  to go.  this is good because we go often.

this morning as we are on our way to the hospital cole was yelling, ‘GO CARS!’ as we sat backed up for miles in the freezing cold.  when another car pulled in front of me he yelled, ‘HAY!’ like he was a new york cabbie!  I kid you not.

when we were finally there and started going through all the pre-op ‘stuff’, like blood pressure and blood oxygen and weight and on and on, he kept say, ‘I love this!’  it was funny.  the nurses and doctors all love to see him.  it is the equivalent of cheers when norm comes in and the whole bar goes ‘NORM’. 

I can’t help but smile.

his body may be broken, but his spirit is alive and well.

… … …

on a side note.  cole was almost 61 pounds today which is a miracle.  an answer to prayer.  a year ago in december, we were facing a feeding tube if cole didn’t start to gain.  and gain he did.  more than 20%.  sing praise…. sing praise.

… … …

on another side note.  I may have noticed some seizure or pre seizure activity the last few days.  because cole has a seizure history, we will be in to see our neurologist soon.  very soon.  for an EEG.  pray that it is nothing.  nothing at all.

if I knew…

December 8, 2009

if I knew then that the days left were so few, I wouldn’t have prayed so hard for them to be over. 

 if  I knew I was really going to lose him, I would’ve stayed awake longer feeling him turn this way and that.

if I knew brian would never get to carry him back to bed after he finally fell asleep, I would have had him read to him and sing to him and talk with him and tell him ‘hang on big guy’ one more time.

if I knew that what seemed like the longest days of my life would be over so fast, I would have tried to appreciate the gift that they were more.

if I knew I was only going to have minutes, I would have kept him to myself instead of having him spend them in the NICU.

if I knew so few friends would get to hold him, I would’ve made sure you were there.

if I knew how much the few pictures we have would mean, I would have had a thousand more.

if I knew…

status update…

December 8, 2009

so here’s what’s going on…

some one really did  pay some of our hospital bills.  brian called to double-check and they said we had a zero balance.  I’m still amazed at this.  how generous.  and the best part is that I don’t have to see a bill to ‘luke matthews’ anymore.

I am having a hard time with words at the moment, but that is where I am, so I am just going to accept it and deal with it as it comes.  if you choose to continue to listen to my ramblings … my hurts and my longings, than wonderful.  if you want to check back when I’m a little more ‘up’  than that’s fine too.  but… this is where I am right now and I can’t just pretend happy for other people.  that wouldn’t be healthy anyway.  for the time being I am sad.  I feel a bit lost.  I don’t expect that everyone can handle sitting alongside me and just being in this anguish with me.  it makes people uncomfortable, I know that.  there are a few people who couldn’t talk to me after we lost luke and they can’t talk to me still… they may never talk to me again.  anyway, this is where I am.

my surgeries went well.  some cramping for a couple weeks was all I could really tell.  I’ll go in, in 3 months to make sure the essure is effective.  I’ll see how effective the ablation is next month.  what I am noticing is that emotional and physically I feel exactly the same as when I would have my period before.  I’m exhausted, my head aches and I’m a little short-tempered, crabby.  now, I know that those things were never supposed to change, it was just the hemorrhaging that was supposed to be better.  we’ll see.  I’m thinking that I may have to be on some kind of serotonin to keep a more balanced  perspective.  it is hard to know that I should  would be doing something different and yet not have the control to actually act on it.  it sucks to not be able to think straight 2 weeks out of the month and I  hate misspelling words, feeling so tired and worrying about who is going to go get some milk!  ahhhh!  I’m sure that in heaven I will have the perfect level of serotonin every single day.  just one more of the joys I look forward to.

we did shoeboxes and continue to do shoeboxes.  there is one on my table now for a little boy of about 1.  my mom left it for me to drop off at the warehouse.  I added a little brown moose and a new box of colors.  you could still make one too.

“F” is not going to be coming every morning anymore.  she will come when I need her bless her heart, but it wasn’t really making a huge difference in cole’s attitude when it comes time to get into ‘blue’. (his power chair)  and, I only have so many hours available for an aide.  she is a blessing though and I’m thankful that she is available when I need her.  she totally is thinking of me in the situation and not herself.  not many people will do that.

I want to end with the verse about coming alongside those who grieve, but I couldn’t find it quickly enough…  if you have it or find it, send it to me please.  thanks~

troubled rest…

December 7, 2009

I need some rest.  really.  just some uninterrupted sleep would do me a world of good I think.  there has just been too much going on.  company 2 weekends in a row, having surgery, coordinating cole’s doctor appointments and braces and surgeries and ingrown toenails and on and on.  trying to get dawson ready for his big trip.  keeping up with punkin and her craft projects. oh and brian…. we’re like ships in the night.  silently passing sometime in the darkness and then gone in the morning.  needless to say the washing machine keeps washing and the sink is always full of dishes. we are always out of something… milk, juice, bananas.  and of course that is just the physical part of it.  now add emotional drain.  were I had been doing pretty well, I have now started to stumble alot more.  falling here and there.  snowflakes everywhere I turn.  babies and baby things all over the place.  all the haunting memories of a year ago.  like the way I would stop and get a double cheeseburger and fries after my ultrasound every week.  how I’d choke it down between sobs, and wonder why I even stopped for food in the first place.  all the phone calls I avoided because I couldn’t speak.  sara, the nurse, who became my friend because she was so kind and helpful when other nurses were not.


I tried to get some rest today.  I layed down after I dropped gabrielle off.  my rest was very troubled though.  I couldn’t fall into a peaceful sleep.  my dreams just continued on with my day.  I was making appointments, cancelling appointments, arguing with nurses, feeling scared.  just like a year ago, when any moment of sleep I got was plagued by nightmares.  todays little troubles were not near the same level of awful as the dreams I was having last december, but still bothersome.  why can’t I just dream of a beach with the gentle crash of waves to lull me to sleep as I swing in a hammock in front of my very own cabana?  why not a crackling fire to put my feet by somewhere high in the mountains after a long day of skiing with my love?  why not the chirp of crickets and flickering light of fireflies as brian lay on a blanket out in the tall grass starring up at the sky and counting the stars?  these things have all happened?  why can’t my subconscious pull up some of this stuff?

enough rambling.  thanks for listening.  I’ll let you know when I have a sweet dream or some peaceful sleep.

all that I can say…

December 2, 2009

you know how I am about music.  I do think that it conveys much more than mere spoken word every can.  so, this is my theme song for the time being. 

I’m just realizing that being home alone so often, might not be such a good thing.  it didn’t really occur to me until tonight.  up untill now I had been thinking it wasn’t really that big of a deal.  (brian is working at target during the evenings for the time being because he has limited hours at his ‘real’ job.)  I was getting things done.  the house is cleaner.  it is nice to have a little quiet. … a little quiet…

now, I’m beginning to wonder.  I seem to be spending a lot of time listening to music and watching videos on youtube.  is it therapeutic or is it making me sad?  I can’t tell.  can you separate that out even.  is what I’m doing, because of where I am or is where I am, because of what I’m doing? …  … …

I’m not good at alone.  I’ve never really been alone.  I never went out to eat or saw a movie alone.  I didn’t even go to the grocery store alone until dawson was… around 2, and then I had punkin shortly there after so I wasn’t alone anymore.  I shouldn’t  be alone now. I should be all cuddled up with luke on the couch, watching praise baby or something.  I’d probably have my head laying back, half asleep with a headache and some kind of food stain on my shoulder from whatever it was that we tried to eat today.  I guess either broccoli cheddar or spaghetti.  would  I appreciate what I was holding on to?

I could get up and do something.  I could do the last of the christmas decorations.  I could make cookies since my parents are coming up tomorrow.  I could get things in order for small group.  I could practice my guitar.  I could do my exercises.  I could do my bible study.  I could take a bath and read. 

but no.

I seem to be drawn to the computer to sit here with my head in my hands crying and listening to the same sad songs over and over again.

anyone else free for a late night date at my house.  maybe a movie… some popcorn.  anything but reality.  but be prepared, reality may come anyway.  it seems to show up like that.  whenever it wants. … still… at least we’d be together.

listen to the song.  close your eyes and hear  the lyrics…  I’m sure there has been a time when this was all you could say.

here it comes…

December 1, 2009

it’s getting harder and harder to put on my happy face.  so many things coming at me and reminding me of him. 

the stockings hanging by the fire, or lack there of

the ornaments with everyone’s names

the december calendar that the kids put up and went on and on about luke’s bday

gabrielle clapping the syllables for everyone’s name, including luke

the family picture that I can’t get, that doesn’t have everyone in the family in it anyway

this song

that song

this prayer

that prayer

all about him.  all the time.  it is mounting, I can feel it.  who will be the unsuspecting one, that asks how I’m doing and I actually tell the truth to and just bawl?  who will it be?