My heart feels so very heavy today. I miss Rachel so much. Dave called from work, missing her too. So we cried on the phone together. It helps to know that we are both on this journey of grief together.
I guess we are still processing the information from our meeting with Genetics, which isn't a suprise. We were there for over an hour. Some things were clarified from our last meeting two years ago. Of course back then, our brains were struggling to make sense of everything at once. This time, it was hard in a different way. At the time I wanted to know how this could have happened to us - I wanted answers. (but I wanted the short version) And now, I wanted to know if it would happen again - to us, to our kids. I had planned to write about what we found out but I don't feel ready. It's much too hard right now. But if you send me a note to ask about it, I'll tell you. Or ask me in person.
For those of you wondering if we are testing specifically for heterotaxy - Rachel doesn't really fit the mold with most isolated heterotaxy cases. She presented with different issues, her brain malformation being one of them. Also she said that most heterotaxy kids do not have missing organs, they are usually just reversed? (the spleen being the exception) There is a four panel test being done in the States (not in Canada yet) to test four genes that are known to cause heterotaxy. We are requesting to have that done, but our Geneticist is doubtful that it would really give us useful information.
Walking into the Hospital was really hard too. But that took me by surprise. I hadn't prepared myself for that and suddenly I was fighting to hold back the tears. I have so many memories of being there with Rachel, dozens of visits, or times when I took the older kids over there to play indoors, just for a change of scenery from the Flames House.
As we left, with the burden of all that information, our kids didn't seem to notice. They were chatting happily about stuff, the movie we let them watch so we could talk with the Geneticist, Abigail was skipping along oblivious to moving cars....oh, to have the ability to be 'in the moment' like a child!!!
oh, I want my Joy back...I need your Joy, Abba Father. I don't know what to do with all this scary information. And the deep aching in my heart for Rachel. You know the whole picture and I see such a small part. I can't carry all of this....
Thursday, January 26, 2012
Tuesday, January 24, 2012
Happy Birthday Ethan!
It's so hard to believe...our little boy is six years old today! He woke up to a trail of candy and yellow arrows leading from his bedroom to the table....and at his seat there was a box of chocolate cheerios for breakfast and a funny face balloon guy taped to his chair. He has a special snack in his lunch box today with notes from Abigail and me. And when he gets home we're going to have leftover pizza and cupcakes!
Two years ago, with the news about Rachel fresh in our minds, we celebrated Ethan's birthday with his friends. I so wish his birthday didn't have to be so connected with that awful week of ultrasounds and fears. I'm finding it a bit hard again this year to put much effort into his special day. I sure am THANKFUL for this little guy though - he gives us SO MUCH joy.
This morning we heard news that my sister in law, who is pregnant with twins, is facing some very difficult unknowns. I wish I could be with her today.....
http://mostlywhatnot.blogspot.com/
Later this afternoon, we have our Genetics meeting. (again Ethan's birthday is connected to something that could be potentially hard...) I haven't been able to get much done all morning, wondering about my sister, wondering about this meeting. I'm listening to Fernando Ortega today - the only music that really worked to help calm my spirit in those many hard days.....and this is the verse I read.....Thank-you Father, for knowing my heart, my groanings, for helping us in our distress.
"The Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God's own will." Romans 8:26-7
Two years ago, with the news about Rachel fresh in our minds, we celebrated Ethan's birthday with his friends. I so wish his birthday didn't have to be so connected with that awful week of ultrasounds and fears. I'm finding it a bit hard again this year to put much effort into his special day. I sure am THANKFUL for this little guy though - he gives us SO MUCH joy.
This morning we heard news that my sister in law, who is pregnant with twins, is facing some very difficult unknowns. I wish I could be with her today.....
http://mostlywhatnot.blogspot.com/
Later this afternoon, we have our Genetics meeting. (again Ethan's birthday is connected to something that could be potentially hard...) I haven't been able to get much done all morning, wondering about my sister, wondering about this meeting. I'm listening to Fernando Ortega today - the only music that really worked to help calm my spirit in those many hard days.....and this is the verse I read.....Thank-you Father, for knowing my heart, my groanings, for helping us in our distress.
"The Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God's own will." Romans 8:26-7
Saturday, January 21, 2012
A Blessing on Each 21st of the Month!
Just a few minutes ago, a wonderful, gentle-hearted lady just stopped by with some home-baked cookies and a Tony Roma's Gift Certificate, and a poem written about Rachel!! It was all a part of another friend's scheming (also named Rachel) to do something special for us on every 21st of the month. Shortly after Rachel died, I mentioned that I found her birthdays (the 21st of the month) to be harder than the anniversaries of her death. And so since that time, on every 21st of the month, someone has dropped something off for us. And each gift till now has been carefully planned and thought out....isn't that neat?? What a fantastic idea....
Thank-you! Thank-you God, for your blessings, for your church. For bringing cheer into my afternoon! For your kindness and mercy....
Thank-you! Thank-you God, for your blessings, for your church. For bringing cheer into my afternoon! For your kindness and mercy....
Another 21st of the month...
Another 21st of the month today. Another reminder to me of how much we would have liked to celebrate Rachel's milestones. My heart has been hurting so much more lately too. There are so many things that I don't feel ready, or able to write about. Even the little things have seemed more overwhelming. At least the nausea is gone. I'm pretty sure it was from the stress - of wanting, longing for my little girl, and if I couldn't have her, a longing for another baby. Quite a few people told me to just 'go for it', get pregnant again. But if I get so crazy ill just from thinking about it, imagining what it would be like be be pregnant again, how could I realistically go through this again without becoming seriously mentally and emotionally ill? Months of not knowing if I might have another child who could suffer the way Rachel did? I don't have any peace in that direction, just longing, and I admit, some jealousy of women who have healthy births. And then I feel guilty because these are my friends and I have failed them because I can't enter into their joy. I'm so sorry...I've been such a mess lately. We have started exploring some other options though, and I'm not ready to write about it, although you might easily guess what that is. The nausea went away on the day that we started talking about it, which was a possible sign to me, that we were in the right direction. I'm still feeling a bit crazy, just a little less so;) Praying that God would guide our decision making...
About the Radiothon interview - well, she (the interviewer) was Really Great...and patient. I definetly felt out of my comfort zone though. I was willing to do it because I wanted so much to give back to the Rotary Flames House but I would really much rather just write about our experience!!:) They did some pre-recorded pieces with me but Dave is going to do the "Live" piece on Feb 8 or 9 and I know he'll do amazing job!
We didn't make it to our Genetics meeting on Wednesday. (to discuss the latest blood test results) Our van didn't start. I had been preparing myself, emotionally, and mentally for this meeting. So, it was pretty disappointing. It was rescheduled for this coming Tuesday though.
Awhile ago, I wrote that I wasn't able to walk over to Rachel's grave. I thought it would be hard but it turned out to be ok. It was a really cold Manitoba winter day, windy. So we didn't stay long. I know she isn't really there. She's free! And healthy! And safe...and I'm going to see her again someday. I wish I didn't have to wait, but one day it will seem that this wait was just a blink of the eye. On the evening that we left my parents, we lit the memoriam candle we bought in Germany and put it on her grave. (My mom went to retrieve it later) Seeing this picture reminded me that we should start thinking of a gravestone....it's been a painful thing to think about until now. Maybe it still is.
About the Radiothon interview - well, she (the interviewer) was Really Great...and patient. I definetly felt out of my comfort zone though. I was willing to do it because I wanted so much to give back to the Rotary Flames House but I would really much rather just write about our experience!!:) They did some pre-recorded pieces with me but Dave is going to do the "Live" piece on Feb 8 or 9 and I know he'll do amazing job!
We didn't make it to our Genetics meeting on Wednesday. (to discuss the latest blood test results) Our van didn't start. I had been preparing myself, emotionally, and mentally for this meeting. So, it was pretty disappointing. It was rescheduled for this coming Tuesday though.
Awhile ago, I wrote that I wasn't able to walk over to Rachel's grave. I thought it would be hard but it turned out to be ok. It was a really cold Manitoba winter day, windy. So we didn't stay long. I know she isn't really there. She's free! And healthy! And safe...and I'm going to see her again someday. I wish I didn't have to wait, but one day it will seem that this wait was just a blink of the eye. On the evening that we left my parents, we lit the memoriam candle we bought in Germany and put it on her grave. (My mom went to retrieve it later) Seeing this picture reminded me that we should start thinking of a gravestone....it's been a painful thing to think about until now. Maybe it still is.
Monday, January 16, 2012
Interview/Conversation for Radiothon
Hi! In case anyone is still reading....hee hee....it's been awhile since I've been on here!
Tomorrow Dave and I will be meeting with some people from the Alberta Children's Foundation, to do an interview for a Radiothon. (raises money for the Children's Hospital and Rotary Flames House). They want it to be more of a conversation, which is great for me! But I'm still feeling a bit nervous about it. I wasn't sure I even wanted to let people know about this. But I would appreciate your prayers. I do love to talk about our journey with Rachel. But it is alot easier for me to put my words together in writing, than to get them out in person. I just hope I'm able to tell things clearly. Depending on how it goes, I might let you know when that airs;)
So...after five months...am I still grieving? YOU BET! How often do I think of Rachel? ummm....pretty much all the time. I am missing her dreadfully these days. In fact I have just come through a very difficult (mostly anxiety filled) week. Alot of things played into this. But underlying much of it, is that I am still grieving. For the longest time now, I could hardly bear to see babies, let alone hold them. But sometimes I want desperatly to hold a baby, any baby. It's still a pretty sporadic feeling. But yesterday in church, I asked to hold my friend's two month old baby and I stood in the back during the worship and wept. It felt so right - my arms have felt so very empty. It felt like balm for my heart. And at the same time, it hurt so deeply because she wasn't Rachel. Such a crazy mixture of feelings! What adds to the pain is that in the past month, I have had such intense baby cravings. And at the same time such dreadful fear of ever having to go through pregnancy again. I feel nauseous, literally sick with fear, about it. Sometimes, especially at night, I even think I am going crazy. And God seems silent and far away. I feel a bit afraid about being so honest here. And yet, I feel such a need for prayer these days.
This afternoon, I did some scrapbooking. It helped get me out of the rut I was stuck in. And brought on some good healthy tears. This is the picture I pasted in Abigail's book, of Rachel. It was taken roughly two weeks before she died. Isn't she so incredibly beautiful??? oh, I miss her. I wonder what she's doing right now....and I wish so much that I could see her smile again. (I'm having a hard time waiting for heaven!)
Tomorrow Dave and I will be meeting with some people from the Alberta Children's Foundation, to do an interview for a Radiothon. (raises money for the Children's Hospital and Rotary Flames House). They want it to be more of a conversation, which is great for me! But I'm still feeling a bit nervous about it. I wasn't sure I even wanted to let people know about this. But I would appreciate your prayers. I do love to talk about our journey with Rachel. But it is alot easier for me to put my words together in writing, than to get them out in person. I just hope I'm able to tell things clearly. Depending on how it goes, I might let you know when that airs;)
So...after five months...am I still grieving? YOU BET! How often do I think of Rachel? ummm....pretty much all the time. I am missing her dreadfully these days. In fact I have just come through a very difficult (mostly anxiety filled) week. Alot of things played into this. But underlying much of it, is that I am still grieving. For the longest time now, I could hardly bear to see babies, let alone hold them. But sometimes I want desperatly to hold a baby, any baby. It's still a pretty sporadic feeling. But yesterday in church, I asked to hold my friend's two month old baby and I stood in the back during the worship and wept. It felt so right - my arms have felt so very empty. It felt like balm for my heart. And at the same time, it hurt so deeply because she wasn't Rachel. Such a crazy mixture of feelings! What adds to the pain is that in the past month, I have had such intense baby cravings. And at the same time such dreadful fear of ever having to go through pregnancy again. I feel nauseous, literally sick with fear, about it. Sometimes, especially at night, I even think I am going crazy. And God seems silent and far away. I feel a bit afraid about being so honest here. And yet, I feel such a need for prayer these days.
This afternoon, I did some scrapbooking. It helped get me out of the rut I was stuck in. And brought on some good healthy tears. This is the picture I pasted in Abigail's book, of Rachel. It was taken roughly two weeks before she died. Isn't she so incredibly beautiful??? oh, I miss her. I wonder what she's doing right now....and I wish so much that I could see her smile again. (I'm having a hard time waiting for heaven!)
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| In the Baby Swing at Dave's parents. Dave's mom thinks she was so happy because she felt like she was in the middle of all the action. The cousins were jumping on the trampoline just in front of the swing. She was SO happy in that swing. One more.... I just saw this one again today and loved it. She looks so peaceful.  |
Friday, January 6, 2012
Honorary Flowergirl
My brother got married on January 1st. (I won't say 'little' brother because he is 28 and he might not appreciate that) It was a beautiful wedding and we are so happy for them both. Abigail and Ethan walked down the aisle too, as the flowergirl and ringbearer, and they took their jobs very seriously. Afterwards, during the ceremony that Dave was officiating, I looked at the program and saw that Rachel was listed as an honorary flowergirl too! Then, I cried. I think they might have told us but I had forgotten and it was so special to see her honored in this way.
Maybe I'll go back a little bit. The first time we met Jill was at the Flames House. We were having an 8th month birthday party for Rachel and my brother asked if he could bring her. We, of course, said yes! And I knew right away, that I liked this girl alot. She was so personable. She wanted to hold Rachel. And she wanted to know what our journey with her was like. That spoke volumes to me. She wasn't afraid of our pain. (or at least she didn't allow it to hold her back from us) How many girls do you know who have met their boyfriend's family in a hospice? From the very first day, we hoped (and prayed) that their relationship would grow because she seemed such a fine catch. And now they're married! And we are so glad that these two found each other.
At their wedding reception, Evonne and I did a sister's speech and toast. I mentioned some of what I just wrote, in thanks to her. But later I was thinking about how my brother has also amazed me, in his concern for us, and interest in Rachel. What I didn't mention, because I wasn't sure it was the right time, is that both Kelsey and Jill came to be with us shortly after Rachel died. They held her still,cold body. And a picture I will always have in my mind is my brother holding my child, and weeping silently, his shoulders shaking. My brother has a beautiful heart. I love this about him.
He also has a fabulous sense of humour, which came out alot in the stories told at the reception. oh Kelsey, you crack me up....you've always had this amazing ability to help us all look on the brighter side. And I'm so glad you're my brother!
What a great wedding! Here are some pictures.....
Maybe I'll go back a little bit. The first time we met Jill was at the Flames House. We were having an 8th month birthday party for Rachel and my brother asked if he could bring her. We, of course, said yes! And I knew right away, that I liked this girl alot. She was so personable. She wanted to hold Rachel. And she wanted to know what our journey with her was like. That spoke volumes to me. She wasn't afraid of our pain. (or at least she didn't allow it to hold her back from us) How many girls do you know who have met their boyfriend's family in a hospice? From the very first day, we hoped (and prayed) that their relationship would grow because she seemed such a fine catch. And now they're married! And we are so glad that these two found each other.
At their wedding reception, Evonne and I did a sister's speech and toast. I mentioned some of what I just wrote, in thanks to her. But later I was thinking about how my brother has also amazed me, in his concern for us, and interest in Rachel. What I didn't mention, because I wasn't sure it was the right time, is that both Kelsey and Jill came to be with us shortly after Rachel died. They held her still,cold body. And a picture I will always have in my mind is my brother holding my child, and weeping silently, his shoulders shaking. My brother has a beautiful heart. I love this about him.
He also has a fabulous sense of humour, which came out alot in the stories told at the reception. oh Kelsey, you crack me up....you've always had this amazing ability to help us all look on the brighter side. And I'm so glad you're my brother!
What a great wedding! Here are some pictures.....
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Aren't they the cutest? |
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| The Great Looking Couple (with red camera eyes....) |
Since Tuesday...
After I wrote on Tuesday, things did get better. I felt the light creeping slowly back into my spirit again. So, if you did pray for us...Thank-you! Dave came home in the afternoon and we started working like crazy to get our house back in shape. And then on Wednesday, we tackled the basement. I cleaned up Rachel's old 'night' room for a new renter, a daughter of our friends. It's ok. I felt ready. And it's been a joy getting to know her. She will be staying with us for four months.
oh, but Grief is such a hard journey....so many ups and downs....sometimes it hurts so bad, and other times that I expect might be hard, turn out to be fine. I hate that. I hate not knowing when or how the pain will hit. But anyway...I digressed...
We made the other basement room into Dave's office/my sewing room/kid's play room. And then....I dug out the Ikea curtains that I bought shortly after we found out we were pregnant with Rachel.....and I hung them up in that room. I remembered how excited I had once been, to start planning a baby room for her. But this time I could remember and it was ok. It felt right to use them and I was glad I hadn't given them away. They hang right in front of my sewing machine, where I hope (someday!!) to work on a memory blanket with her clothes. Seemed appropriate.
This morning I woke up with the stomach flu. So we are laying low. (or I am, that is). I have been helping the kids with crafts (ones that don't take much supervision). I am noticing a change in my relationship with them lately - and it is a welcome one. Not that long ago, I shared with Dave my feelings of guilt for being an 'absent' mother - through all the unknowns and sorrows with Rachel. And I wondered if my relationship with Abigail in particular was affected, damaged in a sense, by all of this. She seemed to have so much attitude with me. (maybe more than the usual 3 and 4 year old stuff) And I, in my pain, would lash out at her in frustration. It was so difficult, parenting when we felt so overwelmed with concerns for Rachel. We prayed about it together and I started to pray more specifically about it as well. I would say though, that in the last few months, I have sensed her gradually warming up to me. I'm sure it has helped alot that I have had more time to give her my full attention. While on holidays, we played games together and did crafts. We sit and cuddle ALOT more than when we had Rachel too. I am not saying that I expect my daughter and I to be the best of friends. I was a teenager once too;) And I am still her parent. But it has been so good to see the changes that I prayed for. And to enjoy being together.
This morning I found her sitting on the couch, holding two stuffed lambs that we received when Rachel was with us. She said that she missed Rachel. And that she wants a sister to play with. And so we sat there, we two, missing her together.
ok...i need to make lunch for the crew here. Although, it's hard to think of food with a stomach like mine today...blech. Thank-you for reading and for your support. Laura, if you're read this - that book does look interesting. Thanks so much for thinking of me:)
oh, but Grief is such a hard journey....so many ups and downs....sometimes it hurts so bad, and other times that I expect might be hard, turn out to be fine. I hate that. I hate not knowing when or how the pain will hit. But anyway...I digressed...
We made the other basement room into Dave's office/my sewing room/kid's play room. And then....I dug out the Ikea curtains that I bought shortly after we found out we were pregnant with Rachel.....and I hung them up in that room. I remembered how excited I had once been, to start planning a baby room for her. But this time I could remember and it was ok. It felt right to use them and I was glad I hadn't given them away. They hang right in front of my sewing machine, where I hope (someday!!) to work on a memory blanket with her clothes. Seemed appropriate.
This morning I woke up with the stomach flu. So we are laying low. (or I am, that is). I have been helping the kids with crafts (ones that don't take much supervision). I am noticing a change in my relationship with them lately - and it is a welcome one. Not that long ago, I shared with Dave my feelings of guilt for being an 'absent' mother - through all the unknowns and sorrows with Rachel. And I wondered if my relationship with Abigail in particular was affected, damaged in a sense, by all of this. She seemed to have so much attitude with me. (maybe more than the usual 3 and 4 year old stuff) And I, in my pain, would lash out at her in frustration. It was so difficult, parenting when we felt so overwelmed with concerns for Rachel. We prayed about it together and I started to pray more specifically about it as well. I would say though, that in the last few months, I have sensed her gradually warming up to me. I'm sure it has helped alot that I have had more time to give her my full attention. While on holidays, we played games together and did crafts. We sit and cuddle ALOT more than when we had Rachel too. I am not saying that I expect my daughter and I to be the best of friends. I was a teenager once too;) And I am still her parent. But it has been so good to see the changes that I prayed for. And to enjoy being together.
This morning I found her sitting on the couch, holding two stuffed lambs that we received when Rachel was with us. She said that she missed Rachel. And that she wants a sister to play with. And so we sat there, we two, missing her together.
ok...i need to make lunch for the crew here. Although, it's hard to think of food with a stomach like mine today...blech. Thank-you for reading and for your support. Laura, if you're read this - that book does look interesting. Thanks so much for thinking of me:)
Tuesday, January 3, 2012
Ethan can be so very sweet sometimes. Just a little while ago, as I was cleaning up the kitchen, I suddenly felt so sad - so broken. I want my little girl so much. I tried to muffle my sobs so my kids who were playing in the next room, wouldn't hear. But Ethan heard. With my second or third sob, I heard him saying to Abigail that he had to go. He ran into the kitchen and said, "mommy? what is it?" I told him that I missed Rachel and he gave me a long hard hug.
oh, there's so much more I want to write yet. It's been so long. We are just beginning our first day together just the four of us, after 25 days of being with our families. And I think with the silence, everything is crashing in on me again this morning. Dave goes back to work tomorrow too. I thought I was ready - I have so many things on my 'To Do List"....but now it seems a bit meaningless. Please pray for me. Thank-you.
oh, there's so much more I want to write yet. It's been so long. We are just beginning our first day together just the four of us, after 25 days of being with our families. And I think with the silence, everything is crashing in on me again this morning. Dave goes back to work tomorrow too. I thought I was ready - I have so many things on my 'To Do List"....but now it seems a bit meaningless. Please pray for me. Thank-you.