Thursday, December 25, 2008

Merry Christmas

It's Christmas night but we are not actually celebrating Christmas until tomorrow so our mental calendars are a little off. Ask me what day of the week it is right now and I will not be able to answer without a pause.

We hope you all have had a blessed Christmas and that you have thoroughly enjoyed some quality family time. We are with my family in Montana right now and are thankful to be surrounded by such a supportive and thoughtful family. Both sides of our family have done so much for us over the last year that we could not possibly say thank you enough. I found it so hard to shop for Christmas presents this year. Checking items off on a wish list wasn't enough this year - I wanted to get something more than a shirt or a book for those I love. As mentioned previously, our decision-making has taken a hit over the last couple months and though I thought that effect may have worn off by now, I was quickly reminded that it has not! Deciding on Christmas gifts this year when I had already determined I couldn't make shopping any easier by following someone's list was next to impossible! After all my shopping, I couldn't find anything that would have said everything I wanted to say in a gift so I settled for something that would remind them either of how much we love them, or of the value of joy in family.

We have filled Drew's stocking with something of significance for each member of the family here with us and I am looking forward to and yet feeling some sadness over that moment. How I wish my little boy was here opening his own stocking with our eager assistance. I wish he was here trying to get in his brother's hair and puttering around checking all the activity out. I would love to see what his fascination would be - bows, paper, boxes, the items inside, or just studying all the things happening. If I know my little Drew I think he would be studying everything going on, watching Peyton closely, and finding thrills in the Christmas lights. If he was here, I would have a big mylar balloon ready for him to see first thing Christmas morning. As it is, I will tell him "Good morning my precious Drew" before Peyton pulls us upstairs in his youthful excitement and I will find joy in both moments, different as each moment will be.

At this Christmas, there is nothing I can put on a wish list other than my unspoken wish... Thank you God for my family - I can ask for nothing else.

(Drew, I miss you baby. Thank you God for keeping my baby close and for sharing yours.)

May you all have a holiday that refreshes the heart!

Tuesday, December 23, 2008

In the mood for Christmas?

Memories of Christmas - Hopes for the future

This was Peyton and Drew last Christmas.

Daddy and his boys at Christmas

Grandad with cousin Lincoln and Drew at the holidays last year

Quality cuddle time over the holidays last year

Many of our friends have expressed concern over how our Christmas and holiday season will go - here are some of my thoughts on Christmas without Drew.

Christmas this year has taken on a totally different meaning.  I have never been so comforted by the Christmas season, though it has many more emotions attached to it than ever before.  This sounds strange I'm sure, but listening to the familiar songs that I have listened to for so many years and following the same traditions as years past I am finding an unimagined comfort in those things.  It feels like a throwback to a more innocent time, where everything was fixed with a hug and life was not so complicated.  It feels as though I am temporarily transported out of this situation, even though the awareness of our loss is never far off.  
Am I afraid of what Christmas will be like without Drew?  Not really I guess.  We still have so much to be thankful for and Peyton provides so much joy.  He is really into Christmas this year and his excitement is heart-warming.  
I think the reason Christmas is challenging for those of us who have lost loved ones is because of two possible reasons - 1) the memories one will have to face of Christmases past, and 2) unmet expectations of Christmases to come.  Drew was so little last year that he pretty much slept through Christmas so we don't have too many memories of him connected to Christmas.  As such, I don't think that the "memories" will be the hard part, but rather the unmet expectations.  I am sure we will inevitably think about what it would have been like to have him toddling around on Christmas Day, how could I not?!  He would be almost 17 months old and if he followed typical toddler stages, he would be walking around, getting into things, starting to try to say words, following his big brother everywhere, trying to shake boxes that shined and to reach any ornaments in sight, and eager for any new experience.  That is the hard part for me - thinking about what we will miss this Christmas, and even more, thinking about what Peyton is missing.  He still misses Drew so much!

One of our dear friends just brought by the best Christmas gift I could have ever asked for last night.  She painted a portrait of our dear little Drew and it's so lifelike and captures his personality so well that I feel as if I could pick him up off the canvas.  He smiles at us so engagingly that it feels he is here in the room.  I am sure God used her talent to bless us with a small piece of our Drew and I am so thankful.  I will take that through this season and love him through loving Jordan, Peyton and those He brings us during this season, and through sending my love to him.  (I still welcome him every morning and fall asleep leaving him in God's arms every night.)  I am so thankful for God's faithfulness in the midst of crisis.

To all those reading, thank you for reading.  I am honored that you would take the time to visit us this way.  It provides a support unseen, but felt.  We hope you have a blessed holiday season and whatever your traditions, we pray God will bring your family closer through it.  

Friday, November 28, 2008

What's it like?

It's two months today since Drew earned his wings.  We miss him like crazy and not a day, let alone an hour goes by where I don't think about him and I'm sure Jordan would say the same.  Peyton talks about him often too, and is very aware of the loss.  He misses his brother so much, and I'm afraid that I'm just not as good of a playmate as his brother would have been.
I think that is one of the things that hurts the most many days, is watching Peyton go through this and wishing I could make it better.  Drew would be 16 months old now, walking around, beginning to test his vocabulary out and into "sharing" with Peyton.  
Jordan and I were so overjoyed to have two boys and beyond thrilled that we would be granted the gift of watching brothers grow up together.  I can't begin to tell you how excited this thought made us.  There is no relationship I have found that compares to that of my relationship with my siblings.  If you ever saw Drew and Peyton together you would say that they too had an unusually close friendship for siblings so young, and their connection seemed to run deep.  My heart breaks for the loss of this opportunity and for the loneliness Peyton may experience throughout his life.  We pray we can fill our house with the sounds of children interacting, but even if we are blessed to be able to bring more children into our home, there will likely always be a gap in age between Peyton and any siblings that he could have.  There is no way to fix this gap in my mind.  We just have to get used to it.  
There are so many layers to this grief that it feels a little like a wading pool with so many leaks that no matter how many times you fill it up you can't keep it full and every time you patch a hole another one shows itself nearby.  I need more patches!
I find this whole experience to be very surreal and yet all-encompassing at the same time.  Every thread of my being is aware of its loss, yet I feel a strange type of peace and contentment almost constantly.  I miss Drew so much that it physically hurts some moments, but in other moments I am so profoundly thankful that God has surrounded Drew and guarantees that he will never hurt, never struggle under trial, and never stray from Him.  Would I erase the last 7 months if I could and take our little Drew back?  Faster than my heart can beat.  Knowing that we can't though, what do we do now?  I'm not really sure of the answer to that question, but I know God is faithful and He will continue to guide us.  Given that we have no choice but to go forward, I pray we will be able to say 5 years from now that, "We liked who we were before Drew came along, and we loved life best with Drew, but who we are now is better than who we were then."  I believe this experience can cause us to wilt, or it can bring growth and life that we would never have known the fullness of before.  
Does this mean that we are feeling better and that the pain is easing?  To be honest, the answer is no.  It hurts more today than it hurt a week after he died.  Unless you have known the ache of losing someone it's hard to explain, but the longer I go, the more aware I am of the loss.  People told us that it can get harder after the cards and the flowers stop coming and people stop calling, but I didn't realize that I could walk in a stupor equally as long that would begin to wear off about the time the cards started to dwindle.  We are doing alright, and there are plenty of joyful and happy moments in our house these days, but there are also still plenty of tears and conversations of yearning.  
One of our greatest sources of happiness right now is Peyton and we are so thankful for the smiles he provides.  He makes us laugh often and I am sure the laughter is as healing as the tears.  His view on life is so refreshing and adorable!  One of the comments he lit us up with recently was one dropped over dinner.  I was eating a mandarin orange and commented that I had eaten hundreds of them while pregnant with him.  He looked at me, looked at my tummy and thought for a moment, after which he said, "Yup!  And I played with them!" while he acted like he was juggling!  Oh how he makes my heart smile.  How can I mope around during the day and be sad with someone like that around to bring laughter?  
On a technical note, we met with Drew's neurologist recently to discuss his last blood test.  The results are still somewhat inconclusive but it appears Drew may have had a mitochondrial depletion disorder.  We don't know any more about the impact to the rest of our family/family planning yet, but we ran into Drew's genetic specialist on the way out of the hospital that same day and he thought most of the results were back so we should hopefully hear more soon.  We will keep everyone posted.
To any of the nurses/caregivers that Drew had that may follow this blog - we miss you all so much!!!  Please pass our love and thoughts on to all that knew him.

Prayer requests:
Please pray for one of our dear little friends that we met while in the hospital.  She is turning 2 soon and we are praying God will bless her with a strong immune system and as much health as possible.  Please also pray for her mom and dad that they will have the strength, peace and direction they need.
Please also pray for another family we met while in the hospital that God will give them the strength and peace they need during a time of transition and that God will work strongly to heal their child.  

Sunday, November 9, 2008

Fun in the sun, catching up on summer

Mexico 2008 - our belated summer

Saturday, October 11 we decided to get away somewhere so we could focus on our family and on rebuilding connections. Jordan had been thinking of this for some time, but when he posed the idea on Saturday morning the time was right. Drew's service had been the previous Friday and the week following the service was a bit of a blur. My sister and her son Lincoln were in town so we were pleasantly distracted and focused on functioning. When Nicci was getting ready to leave, we didn't really want to just head right back into the "normal" daily routines. We missed so much of the summer and when we were outside at all, the weather was brisk at best so it felt like summer had passed us by. All these factors led to the conclusion that we should take advantage of Jordan's time off work to escape somewhere. We were all too aware that we wouldn't be escaping reality, but a break from life at home would be nice.
About 2 hours after making the decision, we had a week booked in Playa del Carmen, Mexico. About 1 hour after that, we realized my passport was expired. Groan. It had expired August 2, 2008 - ironically that's Drew's birthday as well. In the craziness of the last couple months, somehow that was the last thing on my mind. We called as many places as we could think of to see if we could still go, but who's open Saturday??? The airline said to give it a try, but to be ready for either answer at the airport. We quickly packed our bags and Sunday morning at 5:00 a.m. we were at the airport ready to go but trying not to get our hopes up.
We passed all the necessary checkpoints, and the one time my passport was questioned they readily accepted the reason, but urged me to renew it as soon as I stepped foot back into Canada.
When we got to Mexico, the immigration officer wasn't too sure what to do about the situation so he went in search of his supervisor. The supervisor came over, took one look at me, groaned, laughed and then said no problem. I would have loved to know the thought that was going through his head at that moment!
Mexico was wonderful - it was the break we needed. The weather was so warm and comforting. The heat enveloped us in such a relaxing way, and the resort we were at was all-inclusive so we didn't have to make any decisions about food or where to go for recreation (we have made so many difficult decisions over the last couple months that I shirk away from the simplest decisions right now!). We swam, built sand-castles, read, sat in the sun, and thoroughly enjoyed each other's company. Jordan and I had spent so much time away from each other and from Peyton this summer that it was good to be able to be together with no distractions.
There were many moments where we noticed the gaping hole in our family, but there were also many moments of quiet reflection, peaceful silence and joyful excitement over the gifts God still provides.

Jordan took this picture below - he has a great eye for art.

Both pictures above and below were views from our room.

I am so thankful for a 3 and 1/2 year old! He keeps me from getting too serious.

We could really get used to eating outside all the time!

Peyton was so curious about the coconuts all week. On the last day we were there they had a big beach party with coconut drinks, a beach buffet, and dancing. He wasn't too keen on the coconut milk!

If you ask Peyton what he thought of the week, he would tell you that his highlights were painting ceramics, swimming, and seeing lizards. He is thriving on having Mommy and Daddy around consistently, and has learned more in the last month than it seemed he learned all summer!

It alternated between extreme humidity and rain all day the day we walked to Playa del Carmen downtown. It was nice and warm (you could never enjoy a rainstorm like that in Calgary!), but I should have known better when fixing my hair that morning! I forgot what humidity was like!
Peyton was ready to take the big brown lizard home. I wouldn't mind, but I'm not too sure about the lizard diet!

He liked the lizards better than the monkeys - he didn't know what to think of the monkeys climbing on his head. I wasn't too sure what to think either!

My handsome husband... the beach suited him well, as did the sunburn - I mean suntan!

And finally, here's one of my favorite pictures.

On Saturday the 18th we left leisurely mid-morning, anticipating our arrival back home in Calgary that evening, refreshed and as ready as we could be to resume our lives. We were early leaving and the trip to the airport went so smoothly that we were sitting at the gate waiting for the plane for over an hour. Our plans for the day seemed to be moving well... but we should know by now that plans should only ever be drawn up with pencil. The comedy of errors started at that point.
After sitting on the plane for an hour on the tarmac, the pilot finally came on and said we were having mechanical difficulties - the flaps weren't working. Minor detail... uh? We taxied, sat, taxied, and sat a couple more times before we finally departed (in the same plane!) 4 hours after boarding. About an hour into our 3 hour flight we missed our connecting flight. When we arrived in Denver we learned we would have to leave Sunday morning at 8:30 a.m. instead. I should maybe say we were disappointed, but my sister lives in Denver and any opportunity to spend time with her is a good one. We spent the night catching up and arrived bright-eyed and ready to go early Sunday morning.
Once again my passport passed all the checkpoints and we made it to the gate in the nick of time. When we went to board the plane they wouldn't let me on the plane! What?!?! Peyton and Jordan would be allowed to fly, but due to my expired passport I would have to stay behind. We were a little suprised to say the least! Immigration had no problem with my passport and the supporting documentation I had, but the airline was not willing to take the chance of letting me go in case Immigration in Canada had a problem with it on the other end and fined the airline. My coping mechanisms still weren't working very well, so I'm afraid I was a basketcase at first. The poor gentleman working with us was our age and single - I don't think he knew what to do with this crying lady! I tried to pull myself together while he and Jordan worked out the details of the situation, as we had now missed the flight. Jordan would return on Sunday and Peyton and I would stay until I could get my passport renewed. When all was said and done the airline offered to provide hotel vouchers until I could leave, meal vouchers, first class tickets for all three of us, and coupons for future flights. The best part of the deal was that I would be able to stay with my sister for a bit longer.
I would love to say that's where the craziness ended, but no. On the way home from the airport that afternoon with my brother-in-law and sister their car ran out of gas. Then the next morning when we left to go to the passport appointment, I forgot my wallet with all the extra ID I had and my cash to pay for the passport. Fortunately I had my passport holder with the necessities and just enough cash in it to pay for the passport and the documentation I had stuffed into the holder with my passport proved to be enough (or else the lady helping me felt sorry enough to call it good). An hour later I had a new passport! That has to be the quickest way to get a passport.
Peyton and I were on our way to Calgary by 6:00 p.m. and were so glad when the plane touched down at 8:30 that night. What a trip! We felt so blessed to be able to spend that time together. Mexico refreshed us, Denver reminded us how to laugh, and Calgary was comfortingly familiar. It amazes me again and again how you can feel so different one minute to the next, but I am so thankful that life has both downs and ups.

Monday, November 3, 2008

My two bits... and then some

Once again, I am a little later than I intended in posting this newest post, but I just can't seem to get it together lately! Most of my recent spare moments have been spent tangled up with Peyton (literally - his newest pastime is wrestling!) or catching up with Jordan.  I don't think I will ever look at a spare moment the same again.  I was so close to telling a complete stranger this morning to stop and appreciate her children, and to slow her schedule down long enough to enjoy them.  I had to take Peyton to the Children's Hospital this morning for an eye appointment which was quite a challenging experience as the last time we had both been there was with Drew.  I think we were both aware of the odd feelings it presented and weren't sure how to deal with them.  Both of us were a bit melancholy throughout the experience.  Anyway, as we were leaving there was a mother trying to herd her three children (aged 5-10-ish) out of the hospital.  She was short with them and trying to squelch a disagreement between two of them.  One could fairly easily tell she'd had it with them and was ready to blow a fuse.  I had no ground to make a judgment because I may have reacted the same way if challenged with the same experience, but looking through the glasses I have donned, I just looked at her with sadness that she couldn't see the gift she had.  I was so close to saying, "You are so blessed to have three beautiful children - enjoy every moment with them, even the difficult ones."  I'm not sure how she would have reacted, but it hit me so poignantly at that time that children are such a gift so often overlooked or under-appreciated.  

As we were eating dinner tonight I was loving every minute of Peyton's ramblings and yet yearning for another little one to banter with him at the very same moment.  The thought of my little nephews Landon and Liam (4 and 2 years) interacting with each other made me wish I could sneak up and camp out beside Peyton's door to listen to him interact with someone the same way they must.  What a very special treat.  For my sake, all of those reading who have more than one, sneak up and listen to them every chance you get!  I know fighting comes with the territory and I'm sure I would get fed up with that angle, but how often do you really get to listen to two or more little people sharing their views on the world!??!  I can only imagine the conversations Landon and Liam must have!

I think the reason I wanted so strongly to give my two cents this morning is due to the fact that I used to be that mother racing around on a tight schedule, toting my children along.  I thought I was doing alright as a mother at the time, but looking at it in hindsight, I think I was living MY life, with them in it.  It occurred while searching for memories of Drew that I can remember many outings where I'm sure he was with me, but all I can remember is my mission at the time.  I can't remember him there with me in many of them.  I know he was just a baby and that's just how life has to be sometimes, but my view has changed lately.  I think I will be more inclined to make sure I am aware of Peyton and how he is feeling during our outings.  What is his view of our experience?  Is there something I could do to make it a better experience for him?  My father-in-law taught a really great class at church on Sunday and it really crystalized the thoughts that had been floating through my consciousness, that I need to have less of self and more of others.  In so many of my outings, they were about me - what I needed to get, what I wanted, where I needed to go, what I needed to buy for the kids, you get the point.  I don't think those outings were unnecessary, but my perspective had so much room for improvement!  Peyton lit up my day when we went shopping the other day, and we both had so much fun.  I know not every experience will be like that, but I hope this change in perspective will not be temporary.
I really did mean to post about our trip to Mexico, but this has been so strongly imprinted upon my mind lately that I had to share this thought.

We still covet your prayers as we are still waiting for test results about what type of mitochondrial disease Drew had and whether or not we can have more children or if it could affect anyone else.  Thank you so much for praying!!!

Saturday, October 25, 2008

Never knew I could feel this way (and need your help)

I never knew I could hurt so much, love so much, miss someone so much, laugh so much in the midst of pain, and feel so much all at once.  
I have not been able to write for a while due to two reasons, the first being that we were in Mexico for a week, and the second reason is that I usually do a new post in the evening, but that has been the time that I miss Drew the most.
All things considered, we are doing well, but I will try to tell you a little about what life is like right now.  Please don't be discouraged in reading this, and I will try not to write sad posts too often.  I will finish this post (which threatens to be lengthy...) with an update about our trip.
As long as I can remember I have most often woken up with an excitement for the day ahead.  I still wake up with that feeling and then my mind adjusts itself as I remember again that Drew is not with us.  He is here, just not HERE.  The favorite part of my day was going in with Peyton to get Drew, seeing him get so excited to see us, and watching him and Peyton together.  I miss that.  I don't start off sad, just resigned.  Peyton is usually awake first so the day is usually off to a flying start, and often with a laugh or a shake of my head at something Peyton is up to (thankfully).  We have been doing a daily Bible reading at breakfast, which often lately has had some mention of the Lord healing someone, so it always provides a good conversation and again, some more reflection.  After that there is so much time to fill in the day - I am not accustomed to having a preschool child around!!!  I have always had a baby!  In the last 4 years I have always had a diaper bag and a baby with baby's needs to meet.  Even though Peyton has always been around, before Drew he was a toddler.  During Drew he was a toddler/preschool child, but Drew had needs to be met and Peyton had to share his time.  Now it's just Peyton - what a difference!  
Peyton is so glad to have me around all the time that he wants me to participate in everything he does all day long.  I find myself battling inside to balance things because I know there are still things to be done, but I feel like I need to spend every waking minute with Peyton.  I am driving myself in circles with this!  I know he needs to learn to play on his own and that it's ok to spend some time doing the things I want/need to do, but given our experience over the last 5 months and the state of mind due to grieving I feel almost guilty if I don't spend my time with Peyton.  Oy!  I do enjoy life with a preschool child though I must admit.  He is very entertaining.  He is actually probably the best thing for Jordan and I as we go through this - though he misses Drew like crazy and often asks about him he only pauses for this reflection for a moment before resuming life with joy and energy.  He provides a good reminder that though we will always be aware of Drew, after giving grief it's place, life ought to carry on.  
Usually throughout the day there is something that triggers a strong memory of Drew, which I ought to be thankful for I think, but right now, it just makes me a bit sad.  I found a sheet the other day in my laundry pile that used to be on Drew's bed.  For a moment I thought it might smell like Drew and I desperately searched for his smell on that sheet.  It wasn't there, and I remembered we had washed it so his cousin could use it.  But as I was remembering this for a moment some part of my brain prompted the thought, "That's ok, I can go upstairs and smell him deeply."  It was like a blow to the gut as the rest of my brain quickly reminded me that I couldn't do that.  It's a very strange place to be.  There must be recesses in my mind that have yet to deal with this idea and the permanence of it.
By the time Daddy gets home from work in the evening, I am glad to have his presence around, and find strength and comfort in it.  Peyton and I have alot of fun together and as mentioned before, I can't go through the day moping, crying, or grieving, partly due to Peyton bringing joy, and partly because I don't want to upset Peyton.  (I learned this week that if Peyton sees me like that for long or if I talk about Drew alot during a day it is harder for him and he cries alot.  The one day like that this week every time he got hurt or was upset about something, it turned into a cry over Drew being gone.)
Evenings are the hardest, after Peyton has gone to bed.  Over the last couple months that was some of the most special time with Drew for both Jordan and I.  It is hard for many reasons, aside from it being time that was so special that now seems empty.  I can finally let my feelings show in the evening, and I am also much more emotional (on a normal day) in the evening.  This is a bad combination!  Poor Jordan!  Someone will need to take him out for a break once in a while!  This combination is the reason I haven't blogged this week.  If I have been even keel, I don't want to open the floodgates, and if I haven't been even keel, writing has felt like too much to do.
The grief process is strange.  I think the most frustrating realization right now apart from the obvious is that this is not just a stage that will last a week, or a month, or a year or two, but rather something that will be with us to some degree for our entire lives!  I am praying to our Lord that the pain and rawness will subside and that he will bring flowers out of the snow -- that he will help us not to live with bitterness or deep sadness over this long term, but that we can begin to glow with his radiance through the peace of knowing Drew is with him for as long as we live.  I know it will take time to get through the first part, and Jordan and I fully expect to grieve different lengths of time over this.  Both a mother and a father will grieve, but they will grieve very different things, and on different levels.
God has blessed us with a couple of relationships that help us cope.  There are a few families that we are in contact with that have been through or are going through similar situations that are providing so much support.  I am thankful for his hands reaching down through people.  
One of the things that gets me the quickest right now is how hard it is to retrieve memories of Drew.  If you aren't already the journaling type, please get some paper and a pen and write down those memories you think you will remember.  What I wouldn't give right now for a day by day account of what life was like with Drew and of all those special little things he did in a day that I can't seem to remember right now.  I wish I would have written even just two words on the calendar every day about the highlight of that day.  Two words takes such little time but what gems they can be!  I did journal while he was in the hospital but looking back over that I often wrote more about his condition on a given day than about what he was doing.  My heart aches over this.  As a result, I want to recruit your help.  If you have a memory about Drew, can you please send them our way?  We can have an online Drew party!  All we will need is the music!
I promised an update about our trip -  I hope you are not yet too tired of reading.  I will keep it short and provide more on the next post.  Saturday, October  11th we decided we needed to get away for some family time.  We had contemplated it for a while, but that morning we began to look into it diligently.  By Saturday mid-day we were booked for a trip to Mexico for a week.  Sunday morning we flew out!  We have never been so spontaneous our married life, but we are so glad we did it.  It was hard to believe we were actually going, but by the time we hit the beach Sunday afternoon it was reality and we were so glad to be there. 
If you are a Calgarian, you know what a "wonderful" summer we had this year - not ideal at all unless you like stormy and cool summers.  Aside from the weather issues, we were inside most of the summer, so we figured we were far short on our Vitamin D allowance.  We also wanted some time apart from any distractions to put our family back together.  It was good to get to spend such concentrated time together and being in the sun and warmth was very healing.  I could write much more about but want to post pictures too so I will put another post together about our trip.

Thank you to everyone who has sent cards and flowers, and for your prayers - we are so grateful for the thoughtfulness of everyone around us.  It helps so much to have this support!!  

Saturday, October 11, 2008

Life carries on

We will be away from our computer for a couple days as we work on reconnecting as a family.  We wanted to say thank you again to everyone who has shown us so much love.  I also just had to post these pictures.
My brother-in-law, James Mooney, took these pictures for us.  Check out the sunbeams in these pictures!  I feel like Drew is hugging me every time I look at them.

Peyton, Drew and I chose a kite for Daddy for his birthday and Peyton decided he wanted a shark one to fly at the same time.  I chose a butterfly for Drew and I.  Sunday after the memorial service this is how we spent our time.  Peyton has so much life about him, we can't sit and mourn for long.  What a blessing.

We'll write more soon.

Tuesday, October 7, 2008

My heart has a hole in it

We would like to share our little ray of sunshine with you.  Here is the slideshow my sister-in-law Nicola Mooney and our dear friend Jason Holmgren put together for us for Drew's memorial service.  If the above video does not work for you, cut and paste this link in:

It feels as though my Rhode Island-sized heart has a Texas-sized hole in it.  I miss my little Drew so much.  I have wandered all over the house looking for something, anything that might smell like him, but have come to the conclusion that a) there isn't anything, and b) it's probably a good thing that there isn't anything because it would be too painful.  I realized today that when you are drawn to one's smell, it is not just their smell - it's also the sense of being near them that is so touching.  
I am amazed at the peace that has surrounded us this week and the confidence that Drew is better now, but I am also amazed at how much I miss his presence.  I go from hurting to trying not to think back to hurting again, and then after moving through a cycle, I find I come out peaceful, if not a bit short on tears.  Jordan and I went to the mall today in search of something and I found that experience very taxing.  There was an abundance of moms and babies there, and more than that, moms with two small children.  Though I feel happiness for them, it causes me to reflect on our own situation.  Jordan and I sat down for lunch and he left for a moment.  After sitting with only my thoughts for a while I realized I was feeling sorry for myself, and it occurred to me that though grief is ok, I still have so much to be thankful for.  I don't have time to feel sorry for myself, and that is not a positive way to deal with grief!  Please pray for us that we are able to see the blessings in our life right now - I find it helps so much to find things to be thankful for!
Case in Point - last night I was missing Drew so much.  I had come to know him so well over the last 4.5 months - we had spent so much time together and I had learned to watch for his smallest nonverbal cue.  As I was putting Peyton to bed I felt so sad that Drew wasn't there too that I didn't enjoy the process of putting Peyton to bed, or the silliness and life that he exudes.  At about 10:30 p.m. last night, Peyton awoke with bad dreams (about the Loch Ness Monster of all things!).  When he first awoke, we did not know what had upset him so much.  He was carrying on and nearly incoherent.  After asking him yes/no questions we finally realized he had a bad dream, but both Jordan and I found ourselves worrying that he was sick before we drew that conclusion.  He went back to sleep after some snuggling, and I learned a lesson I hope I won't soon forget.  The thought of him being sick, losing him, or having to watch him suffer hurt so much that I realized how much I loved him!  I have let life happen this summer and have not intentionally parented him.  I need to learn to enjoy him again, and find out who HE really is.  Not who I think he is, but who he thinks he is.  He's nearly 4 and capable enough of communicating that, I just need to stop to watch him close enough to see it.  Lessons learned last night: Live in the moment.  Be thankful.  Parent intentionally.  And most importantly, let him show me who he is - stop long enough to see it.  It was an amazing day with him today, and already I feel so much more connected with him.  Here's what I found out today - Peyton's favorites: Color - DARK blue; Food - psketti noodles; Shirt - Mickey Mouse shirt; Game - Go Fish; Friend - Eli; Place to go - Eli's house; Thing to sleep with - Mommy; Thing to do in a day - play with Mommy; Number - 3.  I know it probably was just favorites of the moment, but it amazed me that he so clearly knew what he liked. 

Please continue to pray for our family - we are still waiting for test results from Drew's tests (we could be waiting for months still).  The results could determine whether or not we are able to have any more children, and if it could impact any of our other family members.  Please pray we will get a definitive diagnosis and that it will not have any impact on anyone apart from Drew.  Thank you so much for your continued prayers - really.  They are making a difference. 

Saturday, October 4, 2008

Beyond words...

We are absolutely overwhelmed (OVERWHELMED!) by the amazing outpouring of love we witnessed yesterday!  There is nothing we can possibly say to describe how much it meant to us to see everyone that was able to participate in our celebration of Drew yesterday.  I don't think we have ever felt the depth of emotions and witnessed so much love in one place!  We could never say thank you enough to everyone who attended, or to those who supported us from a distance yesterday.  Jordan and I were so surrounded in peace yesterday - I wasn't sure how the day would proceed but never once were we overwhelmed by grief.  We were however overwhelmed by an amazing awareness of God's goodness and a contentment that Drew is so much better now.  Oh, my heart will ache and does even at this moment, but I know we will never be apart from the love of God, and that in spite of time and distance, Drew will always be a special part of our lives.  
We have to say thank you to everyone who came out yesterday - "thank you" feels inadequate.  As unaware of it as we were at the time, we later realized some had waited in line to express their care and concern for over an hour!  How could people care this much?  We will never forget that, and again, there is no way to thank everyone enough.  Thank you also to everyone who helped make that day so meaningful.  Jason and Nicola, that video that so wonderfully portrayed the joy our little Drew provided was incredible.  To everyone who brought food for the reception - each plate represented love and support to us - we could not believe how much was there!  Kathy and Melissa - thank you for helping the day run so smoothly - you must have hearts so large to do the job you do.  To our immediate families, thank you - we love you so much.  You have no idea the difference you have made.  To our family and friends that came from out of town, thank you for communicating your love to us this way.  
To the nurses and hospital staff - we don't even know where to begin!  It makes me cry just thinking about how many of you were there to support us!!!  You all are beyond amazing.  You do so much more than your "jobs"!  If you have made such a difference in our lives, I can only imagine the number of people you must touch.  To Melanie and Jane especially, thank you for support.  To all the doctors involved over the last couple weeks, we appreciate the role you played in helping Drew and our family.  We know you always had Drew's best interest in mind - thank you for working so diligently with us to provide him the best care possible.  We especially want to thank Dr. Kirton who was Drew's primary doctor and neurologist.  Dr. Kirton went far above and beyond the call of duty - we could not possibly say thank you enough.  We will have to find a way to stay in touch with all those who cared for Drew - it feels like a part of our lives is missing without you all around.  Thank you.
We mentioned in the last post that if you were interested in making a donation in memory of Drew we would include that information.  Please consider: Alberta Children's Hospital : Metabolic Disease Program - Mitochondrial Research. It is and will be our prayer that some answers will be found that can help others.
We will be trying to post the slide show from Drew's memorial service on the blog in the next day or two.

Tuesday, September 30, 2008

Memorial Service for Drew

We will be celebrating Drew's life on Friday, October 3rd, at 10:30 a.m. at Park Memorial Chapel, 5008 Elbow Drive S.W. Everyone is invited to join us for his memorial service and reception (all ages are welcome).  There will be a private burial to follow.  

Any donations made in memory of Drew can be sent to Alberta Children's Hospital - specific details to follow (there is a fund for mitochondrial disease research - we will include information as we obtain it).

If you would like to contact us our contact information is as follows:
Jordan and Kari Clark
2415 - 27th Avenue NW
Calgary, AB  T2M 2K1
(403) 286-9270

Thanks again to everyone for your support!  

Sunday, September 28, 2008

Our sunbeam flows gently back to its Source

It is with both sadness and joy that we write to tell you all that Drew has returned to his Maker.  What a journey it has been over the last 4.5 months.  We have dearly valued every day with our little wonder and though we were so sad to watch him go we were also relieved in a way to see him peaceful and know he was no longer enduring his battle.  We kissed his fuzzy little head, held his hands and drenched him in tears at 12:18 p.m. today as he took his last breaths.  His daddy and I were there holding him tight as he drifted peacefully away, surrounded by our love.  The doctors said Drew was not aware of his surroundings but I will always think he was aware of us loving him, and that he was escorted by the hand to Heaven today.  We mourn but are peaceful at the same time - how odd one can feel in the midst of this.  

We have experienced more than we thought possible in the last few weeks.  From the time of our last post we were told Drew had actually stabilized and could perhaps be around for a few more months.  It seemed he had reached a plateau and was doing alright - a relative term.  He was asleep most of the time and when he was awake he didn't seem to look at us, but through us.  His senses were going, and his autonomic nervous system began to fail more quickly.  He seemed to enjoy a few long baths and his music therapy, and to relax with snuggles, but he was definitely not the same Drew as even the one we brought in to the hospital two and a half weeks ago.  He no longer seemed to have much sense of touch and little we did by mid-week elicited a response.  I think Jordan and I knew he was on a mission to depart sooner than later, in spite of what the doctors were estimating early last week.  It went so quickly and by Thursday he was in a coma.  He had stopped seizing which was a blessing in a way - he looked so relaxed.  
Friday was difficult - we were again presented with some difficult decisions about his future.  Did we want to cut back his nutrition and just let him start to go slowly?  His brain was very ill, but his body still seemed to be functioning well.  Did we want to continue to support his body?  They thought he would be comfortable as he was apparently completely unaware of anything we were doing to him, but we were having a hard time with the idea of not feeding him.  It seemed we would be taking the role of God in deciding when he should go in a way.  We thought through every angle we could and still didn't feel comfortable with it.  We prayed about it that day and prayed that God would either make the decision apparent or decide it for us.  Little did we know how quickly God would respond.  He is faithful.  
We spent every hour possible with Drew over the last week, even sleeping beside him all night long ("sleeping" said loosely - I don't think hardly a sigh or a visit from a nurse went unnoticed!).  Last night we took him out for Chinese... we put him in his kidcart and escorted by his oxygen tank and his feeding pump we went down to the cafeteria for Chinese takeout with our whole family.  We made a pretty good parade, all we needed was candy to throw!  What a special experience.  The nurses got a real kick out of it too - Drew has made so many special friends.  
Jordan got some special cuddles last night and I was awake with him alot of the night, trying to keep his little feet and hands warm.  I knew better, but that was the only thing I could do for him, besides snuggling in close.  By morning we knew something was different and called the family in.  We were blessed to have them nearby when Drew returned to God.  I held him for 3 hours this morning, as close as I possibly could and loving every second.  What a gift.  He will warm my heart forever.
Thank you to everyone who has prayed so diligently for Drew and our family through this time - please continue to support us as we transition to this next stage.  We have gently closed one chapter but until we have more answers about what Drew's disease was we will not yet be able to close the book.  We yearn for your prayers that God will be in our midst powerfully, that He will comfort and guide our family - immediate and extended, that we will be able to get some answers on what his disease was and that as difficult as it is that it will be one that affects Drew only.  That is so hard to say, but my heart aches to think of it affecting anyone else.  If this experience has taught me anything it is that we must be so much stronger than we think we are!  It's amazing how much strength we found through a simple little kiss on Drew's fuzzy little head!
As we left the hospital this afternoon without Drew it had to be the hardest part yet.  The last kiss I left with him was both heartwarming and enlightening.  It was not our Drew that we kissed, yet with the last kisses, it felt we could leave his body there and continue on without his flesh, but with his spirit.  He is in a better place and we are aware of a sense of peace about his departure.
As you read this, we hope and pray that none of you will feel discouraged by Drew's passing.  We want his life to bring encouragement about God's faithfulness to those that knew Drew.  It would mean so much more to us to know that Drew's life made a positive difference.  He has certainly changed our lives.  Through everything that he was faced with he still smiled.  He learned to play through his seizing movements, to laugh when he got a reprieve, to love in spite of being wronged (too many pokes!), and to smile through it all.  He warmed everything in his path and turned our faces towards God.  If only I could do so with the same spirit and innocence!  What I wouldn't give to have my dear little Drew healthy and here... oh what I wouldn't give.  My heart will ache, but better to have known him and loved him than to have never known him.

Thank you for all your encouraging comments, we are sorry we don't get to respond to them all.  We will continue checking and trying to post updates.  Thank you even more for your  continued support!  We love you all!

Wednesday, September 17, 2008

Can we roll back time and hold it there?

Daddy's favorite picture of Drew
One of Mommy's favorite pictures of Drew
There just is no easy way to say what we are having to say...  my heart aches to be able to tell you Drew has been miraculously healed, but that is not what I get to say right now.  Through my tears I will write that the doctors have given Drew a limited number of days before he gets to sit in God's lap and be held close by him.  I am still praying that they aren't right and that God has some wonderful plan to heal Drew at the last minute, but at the same time my heart groans for Drew every time he gasps for air or seizes with courage.  He is slipping away, bit by bit.  I never knew something could hurt so bad, and yet you have to keep breathing somehow.  The only way I am getting through this right now is by constantly reminding myself that "God is able to do immeasurably more than I can think or imagine." (Ephesians 3)  If He is going to do that and what I'm imagining is Drew healthy, running around in the back yard with Peyton having fun, it must be really good.  I know we will have to go through this pain and work through many struggles, but I also know God is good and will not leave us to suffer alone.  We have had so much support through the nurses, doctors, prayer groups, our church and so many churches and people we don't even know!  We had no idea the reach such a little one could have - we pray that God will change many lives through Drew's life.  He reminds me of a brilliant ray of sunshine that comes and warms everyone in its path but passes quickly to serve another purpose.  Please don't misunderstand me as I write this, we have absolutely not given up on Drew, but he is so far from the Drew we know that it feels that he is gone already in some ways.  God has performed greater miracles.  How will this miracle look?

Details:  The doctors came to talk to us Monday and told us that after looking at his most recent MRI and EEG that his brain is deteriorating.  He doesn't seem to see us anymore and cannot move at all.  Some of his body functions are starting to fail slowly.  The doctors estimate he may have days or weeks to stay with us, but they don't expect he will have months.  His condition/symptoms are in line with a mitochondrial disease, as they have been expecting all along.  We still don't have a diagnosis, but they are 99% sure this is what he's suffering from, and that it's a very severe form of these diseases.  Our prayers are these: that God would still heal Drew somehow, that God will be glorified through this, that Drew will NOT suffer, that God will strengthen our family, that this disease would be limited to Drew and not affect any of our other family members, and that we may be able to have more kids, unaffected by this disease, in the future if it be God's will.

We will try to keep you posted but I am just aching to get back to Drew's side right now and kiss his little head, smell his smell, listen to his heart beating so courageously and just to breath him in so I must sign off.  Thank you all for standing by us through this, we couldn't do it without you.

Sunday, September 14, 2008

A long road, maybe HOME.

Oh my dear Drew... my heart aches for you. I don't think I can get through this post without crying but fortunately there is a box of Kleenex handy. I don't even know where to begin, except to say that we covet every prayer possible for our little Drew. He is so close to God's domain now that I don't know if I am helping anymore, I just pray he is comfortable in God's hands right now.
We went to the ER a week and a half ago with Drew seizing strongly and having problems breathing. At first they didn't know if it was pneumonia, an asthma attack, or choking due to his seizing. He had stopped eating a couple days before, and looking back, I wonder if he was having a hard time swallowing things and knew he shouldn't be eating. We were admitted that Wednesday and they watched him for two days. We were sent home Friday at 3:00. We had been home not 1/2 hour when he had another incident and we were back to the ER by 5:00 with Drew having severe breathing difficulties. I am sure it was due to his seizures - when seizing he couldn't swallow his spit and then after the seizure (one of his stronger, intermittent ones) he would start choking, maybe due to weakness of the muscles that could help him swallow. We gave him a new emergency that night that seemed to have worked really well and we were home by 9:30 p.m. We had a new plan for home too now since that new medication worked.
Over the last couple weeks we had to treat Drew for some stronger seizures but the emergency med we were using was also one of his maintenance seizure meds so the levels in his body were getting way too high. One of the side effects of that med is that it could depress his breathing due to sluggishness so we were trying to wean him off of that a bit as that could have contributed to the problems and now we had a new medication we could try to use at home instead of that one. The only thing about the new one was that we could only use that one twice a week tops as well so it wouldn't get too high and again, possibly depress his breathing. So, the plan a week and a half ago was to only use that one if he got unresponsive or started having problems breathing due to seizures. We made it to Monday before we were back to the ER with severe breathing difficulties and an unresponsive Drew. Mid-day Monday he was doing better after the emergency med but we noticed he had problems so did a culture and found he had a urinary tract infection. We thought maybe we had something easy to deal with and could get out quickly!!! No. We were looking ok, but Wednesday he seemed to have some other symptoms and some more breathing issues so we were examined further and were to stay a bit longer. Wednesday night we nearly had a Code Blue - there were people running everywhere trying to get Drew breathing ok and to get his seizures controlled. (We also had a bad seizure session Tuesday night.) He was ok after that on oxygen, but becoming less responsive. Friday he was even less responsive, gurgling in his breathing, and really working to keep his airway open, all while seizing still. Poor guy. And still not complaining. Friday night they sent us to the ICU for airway support.
I think Friday was the hardest day of our lives to this point - we had a meeting with all of Drew's doctors and nurses. They wanted to know where we stood on how we wanted to support Drew if he took a turn for the worse from this point, and to make sure we understood the seriousness of his condition (even though we don't have a name for it yet!!!). So surreal. Our Drew. Here. Now. Too soon. Why? Just trust.
Anyway, we are still here in ICU, not sure which direction he will go next. He is relatively stable right now thankfully so that is good I guess. He is doing a little bit better today than he had been over the last 36 hours. He was unresponsive yesterday but this morning he started crying again. Just a little, but showing emotion nonetheless. I think he may have actually tried to smile but started seizing because of it. Any exertion right now seems to start a seizure. He is breathing with just a little oxygen, lots less than yesterday. He is keeping his airway open better and is rattling in his breathing a little less. He has a low grade fever sometimes, but low grade is alright for now. He has been tested for pneumonia but doesn't seem to have it - they will do a follow-up x-ray on Monday morning. He has some strange things going on still for some reason that they can't understand though - he is still fairly unresponsive, looking through us rather than at us. He can't sleep for longer than an hour or two at a time. He is flush on only one side of his body, (the same side that was sweating before). He is also retaining water on that side of his body. He still can't swallow so they are drying his secretions with medication which is helping with the choking, but also seems to be affecting his ability to pee possibly - he has to have a catheter inserted every 6 hours (sorry for the additional information but getting it out seems to be therapeutic). As he is doing alright breathing, we are probably going to be released up to the general wards tomorrow morning if he continues to be ok.
On a positive note, we have had one of the best nurses Drew's had yet over the last two days - what a lifesaver. We also have had two of the dearest nurses from the unit upstairs come by to visit - incredible ladies. We have been blessed with some of the most wonderful, caring nurses during this experience. These people have made a huge difference and I don't know how they can do the job they do, but man am I glad they do.
We are surviving as a family right now - challenging time, but life seems to carry on. Our families are here with us which is providing so much support. It is very difficult to talk to many others right now, it just hurts too much and seems like time I would rather spend focusing on Drew. Selfish perhaps, but when faced with the idea of losing Drew possibly in the near future, there is nothing I want to do more than to be with him, holding him, helping him, comforting him, just being there to listen to him breath, and to be close to him. Jordan is amazing - I couldn't ask for a better father for our kids, or a better husband. I have never seen him hurt so much though. I am glad to have him alongside through this challenge. We will make it through with God alongside, but I pray He gives Drew peace. It is so trying to watch him seizing all the time and struggling to breath. I have tried to kiss it better to no avail. I miss my little Drew so much, and I don't want him to suffer. Please pray for him, that God will fix him - either by taking him home, or by making him better. I just don't want him to suffer.
Deep breath. We are hoping Drew may still come through this - there is a chance. He started a new diet last week called the ketogenic diet. We are hoping it could help with seizure control. Also, if we could work his meds out alright maybe he would be able to support his airway better. Maybe this is all just related to a urinary tract infection and the seizures (and too many meds on board to try to control the seizures). The diet is one of the last ideas they have for seizure control for Drew so we really would love to see it work. There is a chance however that something underlying is causing all these complications, with the breathing, weakness, loss of muscle tone, etc. I think the docs wish they knew as much as we do! Drew has made a huge impact on all those around him - his little personality is so amazing. He must just be part angel! Anyway, he is very fragile right now and we are trying to enjoy every minute with him. We love our little Drew more than we knew was possible. We love all of you too, and thank you for your prayers. Please continue to support us in this way!!!

I will try to keep you all posted, but as mentioned, I have a terrible time trying to pull myself away for long! The family finally kicked Jordan and I out of the room last night for some sleep (the first longer bit in at least 3 days... why would we need sleep?) but that felt like much too long of a time apart from Drew! As such, I will sign off now so I can go get another Drew fix, but we love you all.

Monday, September 1, 2008

Oh our dear little Drew

Well, we've been out of the hospital for over 3 weeks now (I didn't say that out loud!), and Drew is doing about the same.  He is not improving but we are learning how to cope with his condition and how to manage it at home.  We have been on the verge of taking him to the ER about 7 times in the last 2 weeks, but after a call to the neurologist on call we have drugged him, waited it out and ended up staying at home each time.  It has been unnerving to say the least, and I don't know if I will get used to this.  Drew usually does fine during the day and then tends to get worse towards evening or in the middle of the night (when one can hardly think straight!).  This is not unusual for seizure kids, as going into and out of sleep are the prime times for seizures.  As he gets tired, his seizures get stronger and sometimes the ones that are usually intermittent, lasting only a minute or two, will get worse and go on for hours without a break.  Those are the ones we try to stop as they seem to bother him more.  I can't begin to describe what goes on in our minds when that occurs, but that's when I wish someone else was making the decisions other than me!  When he gets into these longer ones, he often seems only semi-conscious, and unable to get to sleep.  He can't look around, his eyes start wiggling, his left side tenses stronger and longer, his eyebrow twitches and he gets really weak.  My greatest concern is that these seizures might damage his brain or that if we don't stop them they will just get worse.  I keep asking Drew's neurologist for guidelines about when to push the panic button or when to call but he is just about as baffled as we are.  There are 7 neurologists on the team and a couple of residents and almost all of them are now familiar with Drew to some degree.  When we call the neurologist on call, we usually get one of the residents or one of the other neurologists aside from our primary one.  They are very good and it is so helpful and almost comforting to be able to call 24/7 and get another opinion on what we should do next, but they are so reliant upon our diagnosis of Drew's state and really depend on our input for direction.  I can't seem to remember from one episode to the next how intense the last one was and whether or not we should do something about the new episode.  In one way, I don't really want to because the only thing we can do right now to stop them is to give Drew a good dose of Phenobarb which then completely sedates him and he's dopey for the next couple days.  On the other hand, I don't want to hurt him by not giving it to him.  I just don't know enough about what's going on in his little brain and the impact these prolonged seizures have had to know whether to act on them or ride them out!!!   All of his MRIs to this point have not indicated any deterioration or damage to his brain... thankfully.  Can we just get this in black and white please???  This is my greatest challenge right now!  
I really just want my little Drew back - I miss him.  Insert tears here...  ok, I'll be alright.  Anyway, with all the extra doses we've had to give Drew lately he's not really been himself, and he's also not interested in eating right now either.  He was doing quite well for a while there, but he's not into food right now.  He is fortunately still nursing pretty well and the feeding tube is doing it's job in keeping the weight on thank God.  That is one stress that is pushed to the back burner for now, and I just don't even mind doing the tube thing anymore!!!  
We are doing alright most days, and had a wonderful week in Canmore with my parents last week.  What a peaceful place!  There is just no place like the mountains.  On one hike we did last week, I just kept thinking about the massiveness and majesty of the mountain underfoot,  how great my God is and how he knows all about this little sparrow of his that is struggling.  That comforts me like nothing else, while challenging me at the same time.
The doctor mentioned he is expecting some preliminary results as early as this week or next from Calgary and/or Toronto.  We are praying more fervently now that it is coming closer that there will be some good news.  I pray every day primarily for healing, but also with alot of uncertainty about what to pray.  I just pray that God will bless my little Drew, his brother, our possibilities for future children and our family in the best way He can.  This article has been really helpful and says better than I can what's been going through my head.  The verse from Romans about suffering producing character, endurance and hope and further, a hope that does not disappoint has been in the front of my mind for some time - this just helped put a new spin on it.  If you get a chance you should check this out -  Anyway, enough on that for now.  I should probably sign out and get to bed before Drew wakes up!  Thank you for keeping us in your thoughts and prayers.

Prayers for the week:
Peace for Jordan and I
Please pray (we are praying hard) that Drew's new antiseizure med will work to stop the seizures or at least to manage them well!!!!!!!
Drew is not using his left side still - as I am his primary therapist I am feeling a little discouraged and partly responsible.  Please pray that God will give me endurance, some good ideas and some hope here, and that Drew will get some movement on this side of his body.
We are thankful for the way God has been involved so far, and that He does not abandon us!

Saturday, August 23, 2008

Finally a free moment

I am going to take advantage of this moment... Drew is sleeping and I have oh so responsibly put Peyton in front of the TV so I can try to catch you all up.  It has been quite a busy last two weeks for us.  Time is all blurring together and I thought I lost track of time when Drew was a newborn - now time is a whole new thing for me!  I could use 48 hours in a day to get all the stuff done we have to do in 24 hours!  I won't complain too much though because I have a wonderful husband who has been  helping out so much and I just adore my two little boys.  They are the best!
My mom left two and a half weeks ago and we have been trying to learn how to balance life without her here.  I have to figure out how to get everything done that has to get done and still meet the boys individual needs.  I quickly noticed that Peyton is going to need some special one-on-one time and that I am going to need some help around here if I want to be able to find my house in the mess, cook, do therapy with Drew, and make it to appointments!  We had the social worker and palliative care doctor and nurse over on Wednesday last week for a home visit and after going over Drew's case they have determined we qualify to have a paid helper 4 hours a day for 5 days a week.  That felt good to know that someone besides myself thinks there is alot to do.  Fortunately we won't have to pay for this as Drew's condition warrants external financial support.  They are also going to apply for housekeeping support on an occasional basis for us.  I don't know what that will look like yet, but just the thought of that makes me feel about 10 loads lighter!  I have been doing pretty well emotionally through all this so far, but the last couple days I have been really overwhelmed.  I can't seem to keep up.  How did we end up with so many #1 priorities and how do they all fit!?  It would help if my brain could function - I started doing laundry on Tuesday and because I kept forgetting to turn the dryer on or change loads I am finally finishing it today!  Yipes!  

Wednesday, August 13, 2008

Love my 3 year old!

I'm never quite sure what's going to come out of Peyton's mouth these days.  He makes me laugh every day.  He's beginning to give me a complex though - two times in the last week he has asked me about the baby in my tummy.  Don't get your hopes up - I am NOT pregnant!  I guess I need to do some work on my ab muscles though!  Ah, sweet honesty.  He made me laugh tonight too, not because of what he said, but rather what I said in relation to him.  I was talking to my dad on the phone while putting Peyton to bed.  Peyton was playing with some of his little plastic bugs and as I was talking I noticed him put one of the bugs in his mouth and start chewing on it.  I proceeded to play the good mommy role and said, "Peyton, please take the bug out of your mouth."  The phone went silent on the other end and all of a sudden I realized what I had said and how it must have sounded!  I'm sure Dad was wondering what in the world I am feeding my children!  We got a good giggle out of that.
The other thing that made me laugh today had a double side to it.  I was trying to get out of the house today (which only took me 2 hours to do!) and my two dear boys must have been in cahoots against me.  They must have known we were going to the mall!  We were out on the deck, and while I was feeding Drew, Peyton was puttering about in the back yard.  Before I realized what he was up to Peyton had the hose out and was watering the flowers at the back of the house.  I was rejoicing over having help watering the flowers I can't keep up with and then I noticed he was hauling the hose with all his 3 year old might over to the garage flower bed.  He went to the end where the drain spout is and set up the hose to make a river that would go about 20 feet down the length of the entire flower bed.  At this point I was just watching raptly to see what would come next.  He then went to find things to send down the river and proceeded to completely soak himself and cover himself in dirt.  So much for asking him to keep clean... boy - clean - huh?  Then he realized he had made a big puddle at the other end and decided it would be a good idea to jump in it!  Oy.  Now he noticed he was wet so he stripped his pants off and left them on the deck to dry (I just realized they are probably still out there!) while hollering that he needed some new ones.  Against my better judgment I decided to run in quickly and grab him some shorts.  I heard an odd noise from Drew on my way back out and peaked out the window to see why.  Peyton had put his sandbox bucket on Drew's head.  After groaning inwardly I asked Peyton to remove it and went running outside to intervene.  Drew in the meantime took things into his own hands and tried to remove the bucket;;;;, however, he got a little aggressive trying to get it off and got his fingers stuck in the NG tube next to his nose.  By the time I arrived on the scene (all of 15 seconds had passed) the tube was dangling out and Peyton was standing next to him pleading innocence.  Is it really worth it to get out of the house?  Does Peyton really need pants that will fit this winter?  Maybe I can get by by making him wear socks that match his pants in case they are a little short.  Hm.
The day closed off with a good cuddle.  We thought we had Drew down for the night at 8:00 and then I went on to get Peyton to bed while Jordan went to the hardware store.  After he was dressed and during the previously mentioned phone call he decided one of his bugs needed to climb up to try to touch one of his planets dangling from his ceiling.  Uh huh.  Oh boy.  He climbed up on the dresser and was on his way to climb up onto the basket of books on top of the dresser in an attempt to get an extra 8 inches so his bug could get to the planet.  Whose idea was it to hang the planets up?  Maybe we should start praying that we don't end up in the ER with a broken arm!  As a side note, I do not usually let him climb on the dresser, but again, curiosity as to what he was going to do next took over for the moment.  
After he finally got into bed I gave him a short cuddle and started to move away and he quickly reached for my hand, gave it a good tug and placed it on his tummy where he seemed to think it belonged.  After a couple sighs, he was out for the night.  
It was a good thing Peyton went to sleep so quickly - no sooner had I walked out and prepared Drew's meds than Drew decided he was ready to wake up for another couple hours.  I was so excited when I walked out of Peyton;'s room that both boys were down for the night.  Ha.  I should have known better!  Oh well, Drew's been good company while I've been doing this.  He's perfectly content tonight just to watch rather than play and has been chatting away at me!  What a sweety.

Better sigh (meant to write sign, but should maybe leave sigh!) off for the night, but have to say a quick thank you again to everyone praying for our family.  We have more hope and joy than I expected we would at this point.  There are hard moments, but lots of bright spots too.  I am sure that is due to our God intervening and pray He continues to do so.

Prayer updates:
Drew is eating solids again!  Thankful!  Pray he continues.
Drew's new anti-seizure med will take another 5 weeks or so to know if it will work - please pray it will!
We would like to see Drew recover some strength in his left side - he's real;ly not using it at all right now.
Please pray that we can find a routine that works for all parties quickly.  

Sunday, August 10, 2008

The Dr. didn't believe us...

So we were back to the ER again Saturday afternoon with little Drew.  We had increased his two anti-seizure meds Friday at the neurologist's direction so I expected him to be a little dopey Saturday, but he was really dopey. Saturday afternoon his eyes started deviating to the left and he wouldn't look at us or at things we put on the right side of his head.  It was like he could hear them but wouldn't look over there, or couldn't!  His eyeballs were wiggling too - and I'm pretty sure he wasn't doing it on purpose.  Anyway, he seemed conscious but very out of it.  We called the neurologist on call (fortunately at this point we have 24 hour access, thank God) and he said he would like to see Drew so we loaded up and off Drew and I went to the ER.  We got to the ER and the nurses quickly noticed he was seizing and started calling for doctors.  I was calmer than they were amazingly.  The doctor came in and started asking questions, "How long has he been having this seizure?"  I answered that it had been about 11 weeks or so and he said, "No.  How long has he been having THIS seizure?"  I answered again that it had been about 11 weeks.  He was having a hard time understanding me.  I then explained that this was a new variation but that it hadn't stopped in 11 weeks or more.  He was getting a little frustrated with me at this point I think and kept rewording his question to see if he could get a different answer.  The best part of the situation was when one of Drew's neurologists finally walked in during this conversation and the ER doctor turned to him and asked how long Drew had been seizing and the neurologist said, "About 11 weeks."  It's really amazing where you find opportunities to laugh in the middle of all this, but that seemed like a good one to me.  I had to hold the laugh til later though.  The ER doctor was a great doctor, he just didn't know what to think of the situation.  He was ready to put Drew into a coma and intubate him (breathing support) to try to stop it - I was sure glad the neurologists came quickly!  If they hadn't come quickly enough I think they may have arrived to see me wrestling the nurses and doctors to keep them from doing that to Drew!  At this point, that's the last thing he would need.  It would put him back that much further in his development and as much as they hoped that would stop the seizures, so far any time we have anesthetized him his seizures start right back up when he wakes up.  If we thought that would work we would have done that a long time ago!

Speaking of time, it occurred to me that it has been three months now since this all began.  Usually I feel as though time has been flying, but April feels like it was years ago.  What a mind trip this has all been.  Some days feel like way more than 24 hours! 

Friday, August 8, 2008

Too cute for his own good!

Papa and Drew at their best!

Mr McGillicuddy

I just had to post these pictures before I sign off for the night.  We got Drew some "glasses" for his birthday as that is about his favorite thing in the whole wide world!  He LOVES to pull glasses off any face that comes close enough.  If you have whiskers or a beard too he might gravitate toward you with fascination!

Peyton calls himself Mr. McGillicuddy and even dons an accent.  We aren't sure where the accent came from but you really ought to hear him, it makes even the straightest faced person laugh!  The conversations you can have with him when he is Mr. McGillicuddy are even better!  He wears these every day now.