Pages
▼
Tuesday, December 28, 2010
Rachel "Talking" Dec.24
Rachel is really moving her mouth these days and 'clucking' a bit, which you can barely hear underneath my yammering and Ethan saying "I'm going to win Abigail", over and over again!! I tried to get Rachel to do it again when the house was quieter but of course, it didn't really happen....So this is real life in the Funk house! Rachel is also moving her hands a bit in this one - I think she is trying to copy our 'good-bye wave'. And it also captures one of her very sweet smiles too....
Just Rachel Now
Christmas in Calgary
My parents and sister came from Manitoba to stay with us for four days. My brother already lives here in Calgary. Here are some pictures of our time together.
Reading a Christmas Story |
Christmas
Christmas was tough this year. I felt anxious, restless, and sad. I haven't felt that kind of restlessness in my spirit for awhile. And I think I that deep down I was more afraid than I realized I would be, that we might lose Rachel at Christmas. I thought of a friend of mine whose baby girl died last New Year's Day and she just recently miscarried her second child. And of friends who spent their last Christmas in the hospital. And those who are lonely and desperately missing someone....We even had some lady come knocking on our door, on Christmas Day with a bogus story saying that she needed money...and all of these are reminders of how broken our world is.
But right now I feel so sad about my little girl - because she is my world right now. Almost all my waking hours are spent thinking of her and caring for her. I am even getting Abigail and Rachel's names mixed up, a definite sign of how much a part of our family she has become. And today I was so struck again by the thinness of her arms and legs.....nothing is sticking to her...she has been growing in length but she has so little body fat. I am afraid of writing things like this - because I want you to see her as I do and I see much more than her thin-ness. I see the brightness and depth in her eyes. I watch her reaching her arms up to touch us. She is trying to imitate our talking and our hand movements. I can see in her eyes the desire to communicate and play, but she has so little energy. And sometimes it really scares me to think of how much more difficult life could get for her.
But we are past Christmas - and I am so relieved about that. There were no "heart spells". On Sunday night, she seemed a little 'gaspy' in her breathing....but for the most part, she has been doing really well. We all took turns taking care of her at night because we didn't have respite for three nights. And we took naps when we could.
I am thankful because in these days - there have been many gifts of immeasurable worth....
The comfort and companionship of family...
The friendship of neighbors...
A CD we were gifted with - of my Grandpa Kornelsen playing guitar and singing his faveorite worship songs...It had been so long since we had heard his voice....and hearing him sing means even more to me now, when I have a daughter who may join him soon. Heaven felt closer just for awhile. I can still hear him singing "His strength is perfect when my strength is gone." I am thankful for my Grandpa's perserverance in trusting God to the end.
Other very thoughtful gifts that I don't have room to list here!
Watching the kids open their presents - and knowing how much they would love them. They got to help Grandpa bring the gifts into the house on the day before Christmas and oh, they were in agony..... "Tomorrow" was a lifetime away for them....oh why did they have to wait such an 'eternity' of time before they could open the gifts? Ethan our little negotiator tried his darndest to get us to change our minds - he tried pretty much every tactic....but to no avail.
And I wonder - as a parent, I have alot of joy in watching my kids recieve what they have waited for...Do you think God can hardly wait to show us what He has in store for us too? He sees our disappointment and the agony of waiting now. But one day, that will all be over. I have to say though, honestly, it is really hard to imagine right now what that might look like. I wish I could see it now. Waiting is really hard, isn't it?
I know some of the stuff I just wrote today makes our Christmas celebrating sound more gloomy than it really was... and it wasn't all that way...We played games and laughed and ate...oh, we ate. But I guess these are the things that stand out the most to me right now. And it was a different Christmas than any I have known before, that's for sure.
"No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” 1 Cor.2:9
But right now I feel so sad about my little girl - because she is my world right now. Almost all my waking hours are spent thinking of her and caring for her. I am even getting Abigail and Rachel's names mixed up, a definite sign of how much a part of our family she has become. And today I was so struck again by the thinness of her arms and legs.....nothing is sticking to her...she has been growing in length but she has so little body fat. I am afraid of writing things like this - because I want you to see her as I do and I see much more than her thin-ness. I see the brightness and depth in her eyes. I watch her reaching her arms up to touch us. She is trying to imitate our talking and our hand movements. I can see in her eyes the desire to communicate and play, but she has so little energy. And sometimes it really scares me to think of how much more difficult life could get for her.
But we are past Christmas - and I am so relieved about that. There were no "heart spells". On Sunday night, she seemed a little 'gaspy' in her breathing....but for the most part, she has been doing really well. We all took turns taking care of her at night because we didn't have respite for three nights. And we took naps when we could.
I am thankful because in these days - there have been many gifts of immeasurable worth....
The comfort and companionship of family...
The friendship of neighbors...
A CD we were gifted with - of my Grandpa Kornelsen playing guitar and singing his faveorite worship songs...It had been so long since we had heard his voice....and hearing him sing means even more to me now, when I have a daughter who may join him soon. Heaven felt closer just for awhile. I can still hear him singing "His strength is perfect when my strength is gone." I am thankful for my Grandpa's perserverance in trusting God to the end.
Other very thoughtful gifts that I don't have room to list here!
Watching the kids open their presents - and knowing how much they would love them. They got to help Grandpa bring the gifts into the house on the day before Christmas and oh, they were in agony..... "Tomorrow" was a lifetime away for them....oh why did they have to wait such an 'eternity' of time before they could open the gifts? Ethan our little negotiator tried his darndest to get us to change our minds - he tried pretty much every tactic....but to no avail.
And I wonder - as a parent, I have alot of joy in watching my kids recieve what they have waited for...Do you think God can hardly wait to show us what He has in store for us too? He sees our disappointment and the agony of waiting now. But one day, that will all be over. I have to say though, honestly, it is really hard to imagine right now what that might look like. I wish I could see it now. Waiting is really hard, isn't it?
I know some of the stuff I just wrote today makes our Christmas celebrating sound more gloomy than it really was... and it wasn't all that way...We played games and laughed and ate...oh, we ate. But I guess these are the things that stand out the most to me right now. And it was a different Christmas than any I have known before, that's for sure.
"No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” 1 Cor.2:9
Friday, December 24, 2010
The Sneaky Elves
Last night we found out who has been bringing us all those wonderful Christmas gifts for the 12 Days of Christmas. I was on the phone, the kids were in the bath, and Dave was helping my brother move in a queen size bed (for my parents to sleep on) and suddenly the door bell rang...I opened the door to see this bunch of lovely people singing (woops - I almost wrote 'sinning') "We wish you a Merry Christmas." INCREDIBLE. These are Ethan's preschool teachers and their kids/grandkids. We had a good laugh about how they managed to be so sneaky - hiding behind our neighbors truck while they watched Dave run around....One of the teachers had slipped on the sidewalk and she was so dizzy getting into her vehicle...I didn't catch the fall - just the back of her getting in and was totally stumped as to who it was....the kids had fun ringing the doorbell and running...
Wow - Thank-you! This took alot of time and thought on your part. I lay in bed last night SO AMAZED.
They brought us a wonderful final gift...Gift Cert's for Superstore and toys for the kids....
Someone mentioned on Facebook that this might trigger other copycat blessings.....I hope so...I would love for our family to do something like this too someday....
Merry Christmas!
Wednesday, December 22, 2010
Jesus our Shepherd..
We have received some beautiful gifts this past year. I hope you will allow me to highlight one that I think comes with an amazing story. (I hope I get it right - I have been wanting to get this on the blog for awhile and facts get a little blury these days...)
Some dear friends of ours were recently in Pennsylvania visiting family (his family was together after many years - an amazing story in itself!) and while they were visiting a relative who is also an artist, they noticed a wall hanging of a man holding a lamb in his hands. The man in the picture is her husband and he was a Shepherd by profession before they retired. Thinking of us and Rachel - our friends shared our story with her....and later - she gave it to them to do as they wanted and they gave it to us.
This same artist did a painting of the five amish girls that were killed. The shooter entered their school - remember the story? - and the incredible response of their parents that confused and awed us both? First of all, she gave this painting of the five girls to the school. And the school asked her if she would make a copy for each of the parents....and then the firefighters that responded that day wanted one...and the requests grew and grew....I am crying at the beauty of that picture...(both the real and symbolic) It reminds me of something I read in my devotional lately. (maybe I will find that later)
This is the wall hanging that I can hardly wait to get on our wall:
Here is another wall hanging that we received early on in our journey that I am really looking forward to getting on our wall!!! It is still sitting on the floor in the kids room, waiting for us to get on that. I love this one because the little girl looking at the baby reminds me so much of Abigail. And the older boy could be Ethan in a few years.
Some dear friends of ours were recently in Pennsylvania visiting family (his family was together after many years - an amazing story in itself!) and while they were visiting a relative who is also an artist, they noticed a wall hanging of a man holding a lamb in his hands. The man in the picture is her husband and he was a Shepherd by profession before they retired. Thinking of us and Rachel - our friends shared our story with her....and later - she gave it to them to do as they wanted and they gave it to us.
This same artist did a painting of the five amish girls that were killed. The shooter entered their school - remember the story? - and the incredible response of their parents that confused and awed us both? First of all, she gave this painting of the five girls to the school. And the school asked her if she would make a copy for each of the parents....and then the firefighters that responded that day wanted one...and the requests grew and grew....I am crying at the beauty of that picture...(both the real and symbolic) It reminds me of something I read in my devotional lately. (maybe I will find that later)
This is the wall hanging that I can hardly wait to get on our wall:
Here is another wall hanging that we received early on in our journey that I am really looking forward to getting on our wall!!! It is still sitting on the floor in the kids room, waiting for us to get on that. I love this one because the little girl looking at the baby reminds me so much of Abigail. And the older boy could be Ethan in a few years.
Tuesday, December 21, 2010
Seven Months Old!
Dear Rachel,
Seven months ago, you came into this world. That same day - your casket arrived from the U.S. But we didn't need it yet and we had to have it stored at the funeral home. Here you are alive and so very loved by so many people.
Seven months ago, you came into this world. That same day - your casket arrived from the U.S. But we didn't need it yet and we had to have it stored at the funeral home. Here you are alive and so very loved by so many people.
Yesterday was a busy day for your mommy - she finally manged to unpack the bags from our stay at the Flames House and wrestled the house into some semblence of order....You wanted to eat every hour or more - maybe you were missing mommy's attention a little more today too. You wanted to be held alot and you barely slept at all. We almost got to see your Auntie Jenn and Uncle Paul this afternoon - they were on their way to Winnipeg (stuck at Heathrow airport for several days) but their plane was late and there wasn't time between that flight and the connecting one. I'm sure they would have loved to see you if they could.
In the evening, we went to a fabulous Christmas party at the Flames House. You got passed around to all the staff. Mommy would have had to fight to get you back:) And I was happy to let them hold you - you were a little angel - smiling at everyone and finally, you fell asleep in someone's arms - perfectly content. There were lots of volunteers we have come to know and love - to do crafts with the kids, yummy food, and Joe, one of the chefs made an amazing gingerbread train (each family decorated a car to take home later). I think your brother and sister loved the balloons the best though - and we took home a big handful.
I am so very thankful that God has given us all these days with you - and for the gift of celebrating Christmas and your seventh month birthday with you! I love you so much it hurts.
hugs and kisses, mommy
Monday, December 20, 2010
Days of Christmas - 8,9, and 11
ps -I just read a blog this morning (Dec. 22) that fits a little with what I wrote at the end of this post as well as with your comments. I know for sure that I am not the only one who feels that the 'sparkle' of Christmas isn't there for us this year, and in fact - that so many of the ways we think we should be celebrating even seems trivial and fluffy - in light of our reality. Thanks to a friend for sharing this blog with me. A Light in the Darkness.
Another one that I really appreciated - it reminded me of some of my thoughts a year ago at Christmas - is this entry... Why a True Christmas might be Painful
Friends of ours who recently lost a child were invited to a Christmas party. The host said 'we're just going to be happy - no sad thoughts' or something like that. Needless to say - they found another party to go to, one where they could be themselves - allowed to stare into the Christmas tree for awhile or whatever.... Let's really care for each other this Christmas - and make space for all the messes and pain of life - because Jesus came into our mess too...I've been so challenged in this area lately. It has been so much easier to run the other way from hurting people - to be honest - it is scary sometimes. I need His help to do this well.
Well, we thought that our elves were just taking a little break from the Days of Christmas while we were away - but no! Our neighbor friend just dropped by with two gifts. She had seen them sitting on our steps and decided to keep them safe and warm for us. Then, just a few minutes later - while we were still admiring our gifts in the kitchen, the elves visited AGAIN. So we got three presents at once. Wow. Thank-you:)
Here is a picture of our yummy gifts! And another picture of a few things from the days previous - minus a few edible things......
I have been feeling so very gloomy this afternoon/evening. (Dave thinks that I might be trying to recover from this morning - maybe I am..) I have also been thinking about how our journey with Rachel started almost a year ago and how I was wondering what lay ahead - already sensing that something was different with my pregnancy. And now, here I am - afraid of her dying this week and always having Christmas associated with her death. I am thinking of others right now who are facing an uncertain/difficult Christmas season. I feel anxious, as if there are things I should be doing to "be festive" but I can't even keep up with the simple stuff. And I just don't feel festive. I feel like there should be Easter songs playing, not light Christmas songs. By the way - this does not mean I am not enjoying our 12 Days of Christmas gifts - those really do help brighten my spirit and it has been alot of fun for all of us. But I am just plain sad sometimes too. And maybe that's not so bad. Rachel helps me to focus on what is important about Christmas. The real story - Jesus, Emmanuel - God with us - our God who was born in a barn with the animals - who would one day give his life, to pay the sacrifice necessary for our sin - so that we could be reconciled to God. So that we could one day be with Him forever.
Jesus came to be a light in the darkness...He came to defeat the enemy.
I felt like the clouds lifted a bit at supper - our kids can be so goofy sometimes, that I can't help but smile.
I was thinking of other times that I have smiled lately....like when:
Abigail has to pick the lint from out of Rachel's toes
Ethan asked to hold his sister - right in the middle of a fun playtime with friends at church
I hear Dave playing with the kids in the other room..right now I think he's tying up their hands and feet with tape? oh boy...but they are laughing and full of life.
and I am glad for the light that keeps breaking through.....
and I am glad for my husband who has been waiting patiently for me to get off this computer....I'm going to go be with him now...
Another one that I really appreciated - it reminded me of some of my thoughts a year ago at Christmas - is this entry... Why a True Christmas might be Painful
Friends of ours who recently lost a child were invited to a Christmas party. The host said 'we're just going to be happy - no sad thoughts' or something like that. Needless to say - they found another party to go to, one where they could be themselves - allowed to stare into the Christmas tree for awhile or whatever.... Let's really care for each other this Christmas - and make space for all the messes and pain of life - because Jesus came into our mess too...I've been so challenged in this area lately. It has been so much easier to run the other way from hurting people - to be honest - it is scary sometimes. I need His help to do this well.
Well, we thought that our elves were just taking a little break from the Days of Christmas while we were away - but no! Our neighbor friend just dropped by with two gifts. She had seen them sitting on our steps and decided to keep them safe and warm for us. Then, just a few minutes later - while we were still admiring our gifts in the kitchen, the elves visited AGAIN. So we got three presents at once. Wow. Thank-you:)
Here is a picture of our yummy gifts! And another picture of a few things from the days previous - minus a few edible things......
I have been feeling so very gloomy this afternoon/evening. (Dave thinks that I might be trying to recover from this morning - maybe I am..) I have also been thinking about how our journey with Rachel started almost a year ago and how I was wondering what lay ahead - already sensing that something was different with my pregnancy. And now, here I am - afraid of her dying this week and always having Christmas associated with her death. I am thinking of others right now who are facing an uncertain/difficult Christmas season. I feel anxious, as if there are things I should be doing to "be festive" but I can't even keep up with the simple stuff. And I just don't feel festive. I feel like there should be Easter songs playing, not light Christmas songs. By the way - this does not mean I am not enjoying our 12 Days of Christmas gifts - those really do help brighten my spirit and it has been alot of fun for all of us. But I am just plain sad sometimes too. And maybe that's not so bad. Rachel helps me to focus on what is important about Christmas. The real story - Jesus, Emmanuel - God with us - our God who was born in a barn with the animals - who would one day give his life, to pay the sacrifice necessary for our sin - so that we could be reconciled to God. So that we could one day be with Him forever.
Jesus came to be a light in the darkness...He came to defeat the enemy.
I felt like the clouds lifted a bit at supper - our kids can be so goofy sometimes, that I can't help but smile.
I was thinking of other times that I have smiled lately....like when:
Abigail has to pick the lint from out of Rachel's toes
Ethan asked to hold his sister - right in the middle of a fun playtime with friends at church
I hear Dave playing with the kids in the other room..right now I think he's tying up their hands and feet with tape? oh boy...but they are laughing and full of life.
and I am glad for the light that keeps breaking through.....
and I am glad for my husband who has been waiting patiently for me to get off this computer....I'm going to go be with him now...
Rachel's Mom is a Wreck sometimes!
We're home again. (We were at the Flames House since Wednesday) It feels chaotic in our house after another move, but we are well in our spirits. (I think) At least, I do feel enourmous relief that the morning is over. I was such a mess early this morning. Rachel had two appointments at the Hospital this morning. The plan was for me to take Rachel over while Dave packed for us. I was most nervous about her RSV booster because she had cried hard for 30 minutes after the last one. I almost cancelled the whole thing. I was shaky and on the verge of melting down, trying to visit with people in the kitchen while giving my kids breakfast, but inwardly feeling like a complete mess.
Well - she did fine. More than fine - she cried a little and then settled right down with some milk. She was full of smiles. And the nurses that took care of the immunization were caring and understanding. We weighed her. She is 6 lbs, 14 -1/2 ounces. So little. So precious.
Then I took Rachel over to see her Cardiologist, just a few doors down. Rachel happily watched "Roly Poly Olie" while having her echocardiogram done. The doctors were happy with what they were able to see this time. Basically though, there is no change to the arteries. Her oxygen levels were in the mid 60's.
When we pulled up to the house this afternoon - we saw another present for the tenth day of Christmas! Thank-you for the beautiful red ornaments and chocolates! I haven't been able to keep up with recording all the presents lately. And we started off so well. People were telling me that they were enjoying finding out what gift arrived next. We sure are enjoying all the gifts too - Thank-you.
One of the gifts was a large nutcracker (from the story, not the thing you use to crack nuts). The kids loved that one! (This also came with a bowl of nuts). There was also a lovely red candle vase the day before. That is on our kitchen table right now.
Well - she did fine. More than fine - she cried a little and then settled right down with some milk. She was full of smiles. And the nurses that took care of the immunization were caring and understanding. We weighed her. She is 6 lbs, 14 -1/2 ounces. So little. So precious.
Then I took Rachel over to see her Cardiologist, just a few doors down. Rachel happily watched "Roly Poly Olie" while having her echocardiogram done. The doctors were happy with what they were able to see this time. Basically though, there is no change to the arteries. Her oxygen levels were in the mid 60's.
When we pulled up to the house this afternoon - we saw another present for the tenth day of Christmas! Thank-you for the beautiful red ornaments and chocolates! I haven't been able to keep up with recording all the presents lately. And we started off so well. People were telling me that they were enjoying finding out what gift arrived next. We sure are enjoying all the gifts too - Thank-you.
One of the gifts was a large nutcracker (from the story, not the thing you use to crack nuts). The kids loved that one! (This also came with a bowl of nuts). There was also a lovely red candle vase the day before. That is on our kitchen table right now.
Friday, December 17, 2010
God of my Life to Thee I call
I have been listening to a band called Red Mountain Church alot lately. They have a new album out now too by the way! They put new music to old (and sometimes long forgotten) hymn text. This is a song that I have really appreciated lately...
God of my life, to Thee I call;
Afflicted, at Thy feet I fall;
When the great water-floods prevail,
Leave not my trembling heart to fall.
Friend of the friendless and the faint,
Where should I lodge my deep complaint?
Where but with Thee, whose open door
Invites the helpless and the poor?
Did ever mourner plead with Thee
And Thou refuse that moumer's plea?
Does not the word still fixed remain
That none shall seek Thy face in vain?
Poor though I be, despised, forgot,
Yet God, my God, forgets me not;
And he is safe and must succeed
For whom the Lord vouchsafes to plead.
Author: William Cowper 1779
God of my life, to Thee I call;
Afflicted, at Thy feet I fall;
When the great water-floods prevail,
Leave not my trembling heart to fall.
Friend of the friendless and the faint,
Where should I lodge my deep complaint?
Where but with Thee, whose open door
Invites the helpless and the poor?
Did ever mourner plead with Thee
And Thou refuse that moumer's plea?
Does not the word still fixed remain
That none shall seek Thy face in vain?
Poor though I be, despised, forgot,
Yet God, my God, forgets me not;
And he is safe and must succeed
For whom the Lord vouchsafes to plead.
Author: William Cowper 1779
She's Drinking Again!
We came home for the day so that Ethan could go to his Christmas party at preschool. And so that Dave could get back to work, and our kids could have some down-time here at home. I am a bit nervous about being at home by myself but Rachel seems to be doing well. She has been making up for lost feeds bigtime. Yesterday she fed about 10 times before 8pm and many of them were large feeds. (40 mls). It is so good to see her happy and more like herself again. Thank-you everyone for your prayers.
As we drove up this morning, we noticed a Christmas bag on our steps, and Ethan said something like "someone was being sneaky again." Thank-you for the lovely gifts. They really brighten our day!
I have been reading Mary Chapman's book "Choosing to SEE" at the Hospice. I noticed a few interesting details in the book. I am quite sure that Dave and I were at the Beijing International fellowship (church) the same day that Steven Curtis Chapman spoke and sang there in 2004 (along with Luis Palau), also the very same day that he met his little girl "Maria" for the first time! He talked of how he met her after that service and couldn't get her out of his mind.
And today I feel connected to them because of their loss. Who could have guessed that years down the road - we would have this kind of connection to their story. Oh and one more thing, Maria died on May 21st, 2008 - exactly two years before Rachel was born.
oh, I am not glad for what people suffer in this world, but I am glad for books like this to read right now. It helps me to feel less alone. And they remind me that God can and will work beauty from our pain too.
Being at the Flames House has been good for us. We feel so supported there. I have spent some time doing Light-bright with the kids and playing some table games. My brother Kelsey came to visit us yesterday evening and had the kids laughing like crazy with his storytelling and tickles. Abigail was sad about going to sleep at the end of the day. She said "I didn't get enough day". I thought that was pretty cute.
As we drove up this morning, we noticed a Christmas bag on our steps, and Ethan said something like "someone was being sneaky again." Thank-you for the lovely gifts. They really brighten our day!
I have been reading Mary Chapman's book "Choosing to SEE" at the Hospice. I noticed a few interesting details in the book. I am quite sure that Dave and I were at the Beijing International fellowship (church) the same day that Steven Curtis Chapman spoke and sang there in 2004 (along with Luis Palau), also the very same day that he met his little girl "Maria" for the first time! He talked of how he met her after that service and couldn't get her out of his mind.
And today I feel connected to them because of their loss. Who could have guessed that years down the road - we would have this kind of connection to their story. Oh and one more thing, Maria died on May 21st, 2008 - exactly two years before Rachel was born.
oh, I am not glad for what people suffer in this world, but I am glad for books like this to read right now. It helps me to feel less alone. And they remind me that God can and will work beauty from our pain too.
Being at the Flames House has been good for us. We feel so supported there. I have spent some time doing Light-bright with the kids and playing some table games. My brother Kelsey came to visit us yesterday evening and had the kids laughing like crazy with his storytelling and tickles. Abigail was sad about going to sleep at the end of the day. She said "I didn't get enough day". I thought that was pretty cute.
Thursday, December 16, 2010
Quick Update
A Quick Update:
Rachel had a rough night - she needed some morphine once to help her breathe more easily. She is barely eating - which is ok, she likely doesn't feel hungry. (20 mls in 12 hours yesterday). This is because her body is transferring any available oxygen to what is vital for life - which right now is breathing. She has been very lethargic for the most part. We are focussing on keeping her comfortable. We don't have reasons to think these are signs of the end. She may bounce back from this, as she has the previous times. But her heart does appear to be in a more fragile state again.
Our plans have changed again for today. Dave is going to take Ethan to preschool and attend his Christmas 'concert' (15 min) at the end of his class. He'll probably stop by at home for a few things and try and get some work done. I am disappointed about missing Ethan's concert - he has some lines to say that he knows perfectly. But this seems to be the best option right now. We had all planned to go home every day this week while staying here for nights, but we may end up spending more time here. We'll have to take it one day at a time again. We're pretty familiar with what that means already.
I'm still feeling shaky, like I am barely holding things together. It feels like we're right back on the day when she first had this episode. It also didn't help that Abigail was waking up with terrible nightmares yesterday. (and our night was so disrupted) I wouldn't be surprised if our kids are feeling the changes in our home. Thank-you so much for your prayers. We all need His strength and peace today.
Wednesday, December 15, 2010
Fighting to Breathe again
Rachel had a very difficult 'heart spell' this morning. There was no warning - she was just waking from a short nap. I had just been having snack with the kids and telling them how overwelmed I felt about all the goodness in our life...we were opening Christmas cards/pictures from friends....What a rollercoaster of a morning. I still feel shaky and exhausted - like I was the one that ran a marathon. We gave Rachel two shots of morphine this time, the whole thing lasted almost half an hour but it felt much much longer. I held her and sang "Jesus Loves Me" to her and kissed her and cried. Dave came home and brought a friend with him to watch our kids. I don't know how I even managed to get a movie on for them with everything happening..I was walking around the house with my little girl who may be dying, having to answer my other kids demands...it's kind of sureal.
We are packing up a bit early and moving to the Flames House this afternoon. Thank-you for your prayers.
We are packing up a bit early and moving to the Flames House this afternoon. Thank-you for your prayers.
Tuesday, December 14, 2010
Sneaky Little Elves...
So, tonight I (David) was in the middle of the Grumpiest-Nightsnack-Ever with the Forces of Chaos, when the door bell rang. Being conditioned to expect strange surprises by the previous four days, I sprinted from the table and threw open the shades on our front window, only to see... Nothing and No one. I opened the door, and sure enough, there was a gift bag sitting there. Closing the door behind me, I ventured out in only my socks for the second day in a row. I looked in the dark corner the stairs make with the house. I looked underneath the overhang above our flower bed. I looked on the well lit side of our house, and then crunched through the snow to peer deep into the darkness of the not-so-well-lit side. And yes, all the while my feet were getting wetter and colder. I looked at the other side of the neighbor's hedge. I noted that there were no vehicles parked anywhere near the front of our house, which is where I thought yesterday's Elf must have hid. And then I went inside, defeated and cold again. I am simply astonished. Where could that person have dissapeared to in the 5 seconds between the ringing of the doorbell and when I opened the door? Whoever you are, you have my full permission to feel entirely smug and pleased with yourself. I have no idea how you did it.
Following is a picture of what the gift bag contained. Thank you, thank you, thank you! Whoever (or whatever) you are, we love you too!
Following is a picture of what the gift bag contained. Thank you, thank you, thank you! Whoever (or whatever) you are, we love you too!
Monday, December 13, 2010
On the Fourth Day of Christmas...
On the fourth day of Christmas, my true love gave to me.....
We were watching Shrek 3 as a family tonight (fabulous movie) and we had another visitor. And man, are you ever sneaky. You should win an award or something! Did you see Dave running around outside the house in his socks looking for you? he he - that was good!! Thanks for the popcorn and movie. We enjoyed the popcorn tonight - it was perfect timing! Abigail is eating and seems perfectly fine.
I'm on first shift with Rachel tonight. And she's actually sleeping, so I've got to go! Good-night!
We were watching Shrek 3 as a family tonight (fabulous movie) and we had another visitor. And man, are you ever sneaky. You should win an award or something! Did you see Dave running around outside the house in his socks looking for you? he he - that was good!! Thanks for the popcorn and movie. We enjoyed the popcorn tonight - it was perfect timing! Abigail is eating and seems perfectly fine.
I'm on first shift with Rachel tonight. And she's actually sleeping, so I've got to go! Good-night!
Staying Home for now
Well, it's decided. We are not going to the Flames House as a family until Wednesday - and even that depends on where we are at with the flu here. Abigail seemed fine the last few days but today she is back on the couch, really lethargic and not wanting to eat. *Groan*....Please pray that this passes quickly. There is a possibility that I will go in alone with Rachel for the night tomorrow. Rachel's nights are so unpredictable. There have been alot of thoughts swirling around in my brain lately but no time to write....maybe later.
Sunday, December 12, 2010
Christmas Wreath
Well, we had another visitor this evening. And I missed him/her completely. I thought I had heard a noise at the door just before running downstairs to talk with Dave, and when I came up - the kids and I looked outside to see.....this wreath. Wow. It's stunning! I have always wanted to have a wreath. Would you believe that we have never had one (that I can remember)? And this one is real! Abigail helped me to stick the pinecones and cherries into the wreath and we hung it outside. Thank-you whoever you are.
And thank-you to the person who sent us a very generous gift card by email today too! We're excited about using it!
We are still unsure of where we will be tomorrow evening - at the Flames House or here. Hopefully we will know the answer to that tomorrow morning. We want to make sure the flu has run it's course here before we make the move. And even when we are there, we are intending to come home every day, even just for a few hours. This way, Ethan will still go to preschool and the kids will have some down-time at home. Rachel is doing fine. She is not showing any signs of having the flu. She is definetly eating less. For example, between 8 am and 5 pm today, she only had 60 mls of milk. But she seems content. Thank-you for praying for her.
And thank-you to the person who sent us a very generous gift card by email today too! We're excited about using it!
We are still unsure of where we will be tomorrow evening - at the Flames House or here. Hopefully we will know the answer to that tomorrow morning. We want to make sure the flu has run it's course here before we make the move. And even when we are there, we are intending to come home every day, even just for a few hours. This way, Ethan will still go to preschool and the kids will have some down-time at home. Rachel is doing fine. She is not showing any signs of having the flu. She is definetly eating less. For example, between 8 am and 5 pm today, she only had 60 mls of milk. But she seems content. Thank-you for praying for her.
Saturday, December 11, 2010
Something Fishy Going on...
There's something fishy going on.....
Yesterday evening, we answered the door bell to find no-one there - But we did see supper sitting on the steps for us - and the back of a car speeding away...The card had a nice jingle on it about the First Day of Christmas. Then this afternoon, another door bell...and another gift. (I love the soap by the way - it was on my Christmas list, how did you know?) And another card about the Second Day of Christmas.
hmmmm.....who could this be? Ethan thought this was the greatest - he couldn't stop talking about our mysterious givers. (the cards were signed "the Christmas spirit") Thank-you whoever you are! It sure does brighten our spirits here!
Very good timing on the hand soap and towel. Abigail threw up four times last night. We had planned to be at the Flames House tomorrow until Dec. 20th but that's on hold now. Rachel has been quite fussy from the afternoon on today too - and not eating much. I'm nervous that she is also getting this flu. She really does not need this. She eats so little to begin with...and has so little extra energy - this could be so hard on her.
Other good news (not for sure yet) - there is a good chance that we will get more respite hours. Right now, we have enough for 15 nights a month. In January we hope, that will change to 20 nights per month! While we love the Flames House, we notice that going back and forth has been hard on our kids. This way, we will be able to stay home more.
Thank-you dear friends for you friendship.
ps - glad we could get in some absolutely phenomenal chocolate cake before the flu....thanks guys.
oh there are so many ways we feel cared for by you....
Yesterday evening, we answered the door bell to find no-one there - But we did see supper sitting on the steps for us - and the back of a car speeding away...The card had a nice jingle on it about the First Day of Christmas. Then this afternoon, another door bell...and another gift. (I love the soap by the way - it was on my Christmas list, how did you know?) And another card about the Second Day of Christmas.
hmmmm.....who could this be? Ethan thought this was the greatest - he couldn't stop talking about our mysterious givers. (the cards were signed "the Christmas spirit") Thank-you whoever you are! It sure does brighten our spirits here!
Very good timing on the hand soap and towel. Abigail threw up four times last night. We had planned to be at the Flames House tomorrow until Dec. 20th but that's on hold now. Rachel has been quite fussy from the afternoon on today too - and not eating much. I'm nervous that she is also getting this flu. She really does not need this. She eats so little to begin with...and has so little extra energy - this could be so hard on her.
Other good news (not for sure yet) - there is a good chance that we will get more respite hours. Right now, we have enough for 15 nights a month. In January we hope, that will change to 20 nights per month! While we love the Flames House, we notice that going back and forth has been hard on our kids. This way, we will be able to stay home more.
Thank-you dear friends for you friendship.
ps - glad we could get in some absolutely phenomenal chocolate cake before the flu....thanks guys.
oh there are so many ways we feel cared for by you....
Wednesday, December 8, 2010
Little Mermaid
These are a few recent pictures of Rachel with a volunteer at the Flames House. There are volunteers that come in regularly to spend time with the kids and we can tell that they love doing it. Thank-you!! I called Rachel a little mermaid because she has both her feet stuck in one leg hole. She's long enough for some sleepers but most sleepers are too wide for her so this happens alot.
You are hilarious! This is so much fun!! |
My thoughtful pose |
6 1/2 Months
My, how time flies sometimes. It has been a good week. The tears still come (often unexpectatly) but I feel like my spirit is lighter. This past weekend we were at the Flames House. It was the end of Dave's holiday time and we were very intentional about relaxing and giving attention to our family. We played table games with the kids. We went for a walk, while someone watched Rachel. And we slept at night. And on Sunday evening we visited with some friends that we haven't seen in awhile and it was so good for my heart. They had borrowed a camera from a friend and they got some amazing shots of Rachel.... Thank-you.
Monday was also a good day for me. I made it to the gym and got a haircut. In the afternoon, Dave took the two older kids to go Christmas shopping for me. And we received a special package that morning. A friend found some little girl dresses that also came with matching doll dresses. (I had actually looked for these when I was pregnant but couldn't find any) It's too bad that the doll dress doesn't quite fit but it looked so cute that we just had to take pictures!! I had been feeling a bit sad thinking of how Abigail will very likely grow up without a sister. And I decided again that we needed to enjoy the time we have right now. I think I have been hesitant to encourage Abigail to really enjoy her sister and these dresses helped a bit to do this - and to celebrate their special relationship. Thank-you.
Rachel has been doing really well overall. She has been mostly content. And yesterday I got her to laugh harder than I ever have. It was so beautiful. At the same time, yesterday was an unusual day for her too. It seemed like she was sleeping alot. You would think that a heart baby would sleep lots, right? I know I do. But she is usually awake for long stretches of time, day and night. Yesterday she slept for 4 1/2 hours in the evening. This is extremely unusual for her. I was a little nervous about it and I kept checking on her. I finally woke her up around 9pm. Her lips, eyelids, and hands seemed really blue and as she woke up, she was gasping. It was a kind of breathing I don't remember hearing. Not as hard as when she is having spells. But still very different. My heart sunk in my chest...and I tried to comfort her as best as I could. All I could think was "I'm not ready. God, I'm not ready." The truth is I will never be ready. I am afraid of what the end will be like. I try not to think too much about it but sometimes, like last night I can't help but think of it.
I felt so relieved to see her start to pink up and smile at me as if to say 'what are you worried about? I'm still here.' And today she is smiling up at me from her chair - big grins and sparkly eyes - and I can forget for awhile. I can't live there in the unknowns for too long...it's too hard. I can only trust that when the time comes, that God will give me the strength. Jesus, be my shepherd. The only way I can go through the valley of death is knowing that you are with me. Your rod and your staff, they comfort me.
I just started reading a book called "Choosing to See". It's written by Mary Beth Chapman. (Steven Curtis Chapman's wife) Their little girl died in a traggic accident - and I can tell already that it's going to be a tough read. But good too. I'll tell you how it goes...or you can just go get your own copy : D
In the Prologue, Beth Moore has just described a dream that she had about Maria - which turned out to be an answer to Mary's prayer. Then, she writes this...
"(Others) could reason that, to have a God who cared enough to orchestrate something like the timing of that dream, we'd have a God who'd never let such a tragedy happen to start with. These are places where God exercises His sovereign right to retain mystery. We cannot fathom the intriciacies of the divine plan. But make no mistake, when we are in the driest desert, we can receive the manna to make it all the way to the other side where trees bud again and children laugh. God sometimes delivers us from evils we never see. Other times He parts raging oceans before our very eyes. Still other times He says, "When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you...Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west" (Isa. 43:2.5)
And a song comes into my mind...."In my Father's House, there are many many rooms...." What a gathering that will be.
Monday was also a good day for me. I made it to the gym and got a haircut. In the afternoon, Dave took the two older kids to go Christmas shopping for me. And we received a special package that morning. A friend found some little girl dresses that also came with matching doll dresses. (I had actually looked for these when I was pregnant but couldn't find any) It's too bad that the doll dress doesn't quite fit but it looked so cute that we just had to take pictures!! I had been feeling a bit sad thinking of how Abigail will very likely grow up without a sister. And I decided again that we needed to enjoy the time we have right now. I think I have been hesitant to encourage Abigail to really enjoy her sister and these dresses helped a bit to do this - and to celebrate their special relationship. Thank-you.
"Wake up. I want to talk sis." |
I felt so relieved to see her start to pink up and smile at me as if to say 'what are you worried about? I'm still here.' And today she is smiling up at me from her chair - big grins and sparkly eyes - and I can forget for awhile. I can't live there in the unknowns for too long...it's too hard. I can only trust that when the time comes, that God will give me the strength. Jesus, be my shepherd. The only way I can go through the valley of death is knowing that you are with me. Your rod and your staff, they comfort me.
I just started reading a book called "Choosing to See". It's written by Mary Beth Chapman. (Steven Curtis Chapman's wife) Their little girl died in a traggic accident - and I can tell already that it's going to be a tough read. But good too. I'll tell you how it goes...or you can just go get your own copy : D
In the Prologue, Beth Moore has just described a dream that she had about Maria - which turned out to be an answer to Mary's prayer. Then, she writes this...
"(Others) could reason that, to have a God who cared enough to orchestrate something like the timing of that dream, we'd have a God who'd never let such a tragedy happen to start with. These are places where God exercises His sovereign right to retain mystery. We cannot fathom the intriciacies of the divine plan. But make no mistake, when we are in the driest desert, we can receive the manna to make it all the way to the other side where trees bud again and children laugh. God sometimes delivers us from evils we never see. Other times He parts raging oceans before our very eyes. Still other times He says, "When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you...Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west" (Isa. 43:2.5)
And a song comes into my mind...."In my Father's House, there are many many rooms...." What a gathering that will be.
Wednesday, December 1, 2010
RSV
We took Rachel in for her RSV immunization today. It's in the community earlier than expected so her apointment got bumped up three weeks. This cold strain is especially hard on heart babies - they already have airways that are comprimised. If they get the virus, they are often the first to be hospitalized and need oxygen etc... The nurses were from Children's Hospital - they are used to doing really tiny preemie babes.. I admit, I was a bit nervous about it, because of the 'breathing spell' she recently had. I was worried that crying would set off another spell. But we want to protect her from going through RSV, if we can. (which could be lethal for her) And she really did cry hard - for a good 10 minutes after the shot. We were so glad when she settled. The only thing that finally worked was a dab of tylonol on her soother. She loves that. She was very content all day but rarely slept. This is turning into a pattern, little girl..
Dave's parents leave early tomorrow for Manitoba. It was so wonderful to have them here. It was good to be busy - and it pushed the anxiety aside. We may be heading in to the Flames House this weekend for a few nights. We went over the respite hours allocated to us for last month so we are hoping to utilize them a little more this month. I think we will be celebrating a little girl's birthday there this weekend - she is turning 4. She has had alot of difficulties lately and their family is on our mind alot these days.
Thank-you for your prayers. I do believe that God is giving peace..
Dave's parents leave early tomorrow for Manitoba. It was so wonderful to have them here. It was good to be busy - and it pushed the anxiety aside. We may be heading in to the Flames House this weekend for a few nights. We went over the respite hours allocated to us for last month so we are hoping to utilize them a little more this month. I think we will be celebrating a little girl's birthday there this weekend - she is turning 4. She has had alot of difficulties lately and their family is on our mind alot these days.
Thank-you for your prayers. I do believe that God is giving peace..