Who would have thought that Jamie would have been 3 today! I can't believe how fast things have gone. We have been through a lot in the last 3 years, most I wouldn't want to ever do again. We were blessed to have had her even though it was just a little less than 5 months. Jamie's sister Lindsay just turned 5 months yesterday, Those two are like night and day. Total opposites, Jamie was laid back, easy-going, easy to please, and Lindsay wants what she wants when she wants it. I would like to thank those who sent us emails remembering today, and to my sister-in-law and niece and nephew who left the mum in the angel.
Tuesday April 25/06
Well Jamie's little sister, Lindsay, is here! She was born April 5/06. She is doing very well and is eating like a little monster! (it's all good).
This year the Rebecca Run is on July 8/06, at Fairy Lake in Newmarket Ontario, we are trying to get over the $500,000 5 year mark this year, so far it is all good and are well on our way! Please visit the website to lean more!
Its already been 2 years since Jamie left us. It seem like forever and yet it seems like yesterday. I still think of her countless times throughout the day and miss her terribly, she would have been 2 1/2!
We miss you BoBo!
Saturday December 24/05
Well it is Christmas time again so soon. This year will be better than the last 2. Two years ago Jamie was here with us, and we knew what was in store in the next year and last year we didn't have her and it was just a rough year. This year is a bit better because of the new baby (who has turned my belly into a regular freak show at night...), she is very vigorous, but it is lots of fun. Still no names yet, But we still miss Jamie terribly.
Anyways - Merry Christmas to all, especially to our amazing friends both in and outside of the SMA world. Thanks for everything! On another exciting note - in two weeks Janne and I are going on our "last hooray" trip - a cruise to the Carribean, it will be the last distance trip for a while! We can hardly wait. It hasn't been too cold or snowy here yet this year, but we can always hope for more snow! Merry Christmas to All!!
Friday October 14/05
Jamie is getting a baby sister to look over!!
We just found out today that we are going to be having an SMA free baby at the end of April! Words can't describe the joy that we are feeling! Soo excited. This little one will have many Angels to watch over her!!
I would like to thank all my friends that have supported us over the last 2 years. It's been a hard and long road, but the light at the end of the tunnel is here and its the sun shining brightly! We have the greatest friends in the whole world!!
Tuesday September 6/2005
Happy Birthday to Jamie!! It is BoBo's second birthday today! I know there's a big ole party going up up there today! I wish you were here so we could experience the "terrible twos", I'd gladly take it! Just think, 2 years ago - exactly right now (weird) that perfect little girl popped out! And all of us had no idea what SMA was! Ignorance is bliss as they say. I would like to thank everyone for coming to Jamie's site and remembering her on her birthday! It means alot to us. So a big thankyou to my Aunt Wendy and Uncle Dennis and Jennifer and Dave and Angel Abby Loebach!
So I have some good news to share, its a little late but better late than never! Just before we left to go down east to visit Jisele and Condon, they got the results of their CVS test and they are having a healthy baby! We are so happy for them they really deserve it! They are the some of the nicest, most hospitable people I've ever met, needless to say, we had a great time down there!
So BoBo -
We hope that you had a wonderful day today up in heaven with all the others! We wish you were here with us to celebrate, but we know that you can't be. We think of you every second of every day and can't wait to see you again!
love Mom and Dad
PS. If your having a chat with God - could you ask him to be kind to us and to cut us a break this year? THANKS - mOM
Sunday July 3/05
Less than 1 week until the Rebecca Run. It is such a great event. This year is going to be the biggest yetI can hardly wait.
Only 2 1/2 weeks until we go "down east". I can hardly wait for that either! especially getting to see Jisele and Condon again(www.our-sma-angels.com/angelbretton)!!! I am so exited to see them again. Even though We have only met in person once (last year in TO), we talk almost once a week and she is one of my best friends!
Time flies so quick it's scary, So any of my friends or anyone else who regularly visit this site would like to donate money to the Rebecca Run, contact me personally, send an email or go to the Rebecca Run website www.rebeccarun.com and donate. Drug trials are going very well and they are into phase II for valproic acid. Even though I don't follow the drug trials very closely, I am still interested. Even though it is too late for Jamie and many others, hopefully sometime in the very near future there will be a treatment, so those of us who still want children won't be worried about having to put another child through the rigors of SMA.
Tuesday May 10/05
I know I haven't kept up the journal very well, but there hasn't been much to write about. Janne has arthroscopic surgery on his knee next week, other than that much of the same old thing. The Rebecca Run is coming up - July 9th to be exact. It should be the best one yet! And I'm not just saying that because my daughter is a co-honouree, but the great team at Rebecca Run has already surpassed Louise's goal for sponsors - and we're not done yet!
SSSSSSSSSSSOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOo if anyone is interested in pledging me or donating money for the Rebecca Run - please send me an email!
The SMA charm bracelets have been doing well! and the best thing is that they pretty well sell on their own! Very little effort! Thanks everyone! they should be in in a few weeks.if anyone is interested, go towww.rebeccarun.com
All in all, its still tough. I think about SMA and my daughter and "Why me?" ooohh about 100 times a day. I don't think that will ever change and I don't have any more answers to my questions. I didn't think much about mothers day, just because, I just didn;t and then of course on Sunday it hits you and you don't even expect it, but that is just the way it goes.
Anyways, we are looking forward to getting Janne healed up and then we are going "down East" in July/Aug for two weeks. The best part is that we get to see our buds - Jisele and Condon MacLeod ( see www.our-sma-angels.com/angelbretton ) when we hit Cape Breton, Nova Scotia! Can't wait to see you guys again!
OH YEAH i ALMOST FORGOT!!! 2 weeks ago we received an awesome gift in the mail. It was Jamie's finished quilt from coles quilts! (www.our-sma-angels.com/colesquilts) People from literally all over the world each sent in a cross stitched square and the great people at coles quilts stitch it all together with a border! The quilts are for children with SMA! I will have to download a picture and will put it in the scrapbook section!
Wednesday February 23/05
I know it has been a while since I've updated anything - but hey - really? I have no good excuse. Well this disease has claimed another angel. Jacob died this past Saturday after a fight for over 1 1/2 years!! He was buried today. I know how heartbroken Angela and Alyssa are. Everything seems so empty, the house and especially their hearts. Our prayers and thoughts are with them.
Well, if you want to see video of Jamie - visit www.rebeccarun.com Louise Smith has added video of Jamie and of Abby to the website! What a woman Louise is! I've never met someone who is so passionate about a cause. There is no one who would be better than her for putting together everything for the Rebecca Run. If anyone is interested in donating to the Rebecca Run, send me an email or visit the website - the only way we are going to cure this disease is to raise money to research new drugs and new treatments.!!.
Well, on another note I would like to congratulate our friends Scott and Jen Park on the birth of Felicia on Jan 31/05 - I am very jealous!!
Tuesday February 1/05
Well it's been a year since Jamie left us. I can't say that it has been easy but it does get a bit easier. We still wish we had her back and healthy. This year has been so full of ups and downs, mainly downs, so we are hoping for an upswing real soon. I would just like to thank all of our amazing friends for being there for us and helping us out immensely this year. We are truly grateful for all of you and we aren't sure how we will ever be able to repay you.
So this year (either one way or the other) we would like to have a healthy baby(ies), like we said we just aren't sure where our lives are headed, but we are hoping for clarity. SMA had destroyed lives for so many families, but somehow we all have to try to go on. I know I haven't been very good at updating this journal, I'll try better!
Tuesday November 23/04
It's been a while since I've entered anything, but not much is new to be written about. I would just like everyone to know how much Janne and I appreciate you all for coming and visiting our daughter's website. She was so precious to us and will live forever in our hearts and our minds. We miss Jamie terribly, but we k now and realize that we will be together again soon, and it will be forever. But for now we picture our daughter up in heaven with all the other angels singing and having the best time with a new body, one that is not over taken with SMA.
Thursday October 21/04
It's been a while since I've done any updating, although this may be more therapeutic for me than people who actually read this. Anyways, today is Abby Loebach's first Angel Day anniversary. It's been a year since Dave and Jennifer lost their precious little girl to this horrible disease. I have been thinking about them all day and hoping that they are doing more than just "ok". I can only imagine what this day is like for then, I guess I will find out in a few months.
Jacob isn't doing so well either, he is at Sick Kids, problems with his bowels among other things. Ange is so strong. I know you have to do what you have to do, but this woman deserves "the most special mother award" Amazing, I don't know how she has stayed sane all this time. I think about her and Jacob a lot also. Heck, I think of all the people I know who have, and have had kids with SMA. These are truly special people. We have a little community of people who truly know how others are feeling. All of our stories are so similar and yet so different. The one resounding similarity is that we love our children so much and are haunted forever by what this disease has done. It's not just the lives it stole but our futures. To know that you are a carrier for a fatal disease and to want to be a parent again and to have so many heart-wrenching decisions to make. I HATE SMA!
Monday September 20/04
Long time no write, well things have been busy, but I'll tell you more about that later... Great News - Jamie and Abby Loebach (see link) have been selected to be co-honourees for the 2005 Rebecca Run for SMA - it's held in Newmarket Ont. every year. Next July will be the 4th annual Rebecca Run. Needless to say we are extremely honoured to have Jamie as a co-honouree - especially with Angel Abby! We met Dave and Jennifer at last year's run and hit it off immediately! Should be a great day! Here's hoping!
I would like to wish Jisele and Condon all the luck in the world - they were in Toronto last week, from Cape Breton, going through IVF/PGD in hopes of having a healthy SMA free baby. I know they had 3 embryos "installed" on Friday! Please say lots of prayers for them and all people who choose to go through this amazing procedure! Here's to babies! I'm so fortunate to have met then while they were in Toronto - a long time in coming - I can't wait to see them again!
Monday September 6/04
Happy Birthday to you! Happy Birthday to you! Happy Birthday dear BoBo! Happy Birthday to you!
I want to wish a big 1st birthday to my little angel today! I hope that the Angels are throwing you a big bash today! We love you always and forever!
Love Mom and Dad
PS. I would like to thank Dave and Jennifer Loebach for the wonderful book "Mommy, please don't cry, there are no tears in Heaven". It is such a wonderfully written and illustrated book. To me it seemed as though Jamie was talking to me about how great heaven is and about how happy she is in heaven. Thank you so much guys! I will treasure it always!
I would like thank our friends, Vince and Kirsten for having us for dinner and sharing Jamie's birthday cake with us on Saturday evening. We spent time talking about Jamie and toasting her! It was a great evening! Thank you!
Monday August 30/04
Man! I have the best friends ever! Today our friends gave us one of the best, most meaningful gifts ever. Dave wrote a song about Jamie. It is wonderful! I love it! It's called "From Arms of Love" Please check it out - I'll put it in the scrapbook section. Thanks Penny,Dave,Kalvin and Dakota Benson! I love you guys!
Well, I cant' believe how fast this summer is going. It's almost September, and almost Jamie's first birthday. I'm glad that it is a holiday this year, I'm not sure how I'm going to be able to deal with that day if I had to go to work. I'm not sure what to do for her birthday, but I am sure that I just can't just let the day go by. We are thinking of having some of our close friends over for dinner, complete with birthday cake, on Saturday and then maybe release some balloons. I wanted to put information about SMA in the balloons so maybe someone might learn something new about a very serious disease that kills babies. Last Saturday we went to Jacob's first birthday (SMA type 1). He seems to be doing better. What a gorgeous little man.
I was just thinking what a great group of people there are associated with SMA. There are so many families that have gone through the same thing as us, it is of great comfort to know that we are not alone, and that others know what it is like to lose your baby to this disease. It is such a great place for support!
Please keep Janne and I in your prayers with Jamie's upcoming first birthday. This is going to be a really tough day, Krista
Yesterday we went to Peterborough to help "baby" Jacob celebrate his 1st birthday. It was a beautiful day for a beautiful little man. I can't believe how much he has grown in just over a month!! (Jacob is SMA type 1 also). He seemed to be having a good day and definitely had a lot of attention. I think finally Angela got to enjoy herself, even though it was a very emotional day for her. She told me that 8 months ago she didn't think she would see this day, I'm so glad that she did. We also met the rest of the family, Jacob's dad, Jody, Angela's dad, Wayne, her mom Sheila (we had met at the Rebecca run), and the infamous nurse Tiffany, the life saver (both literally and figuratively), the only person other than Ange, who is trusted with Jacob's life. We let balloons go in memory of all the SMA angels here and gone (Jamie). It was a really great day. Congratulations again Jacob and Angela!!
Friday Aug 13/04
Last night we saw Don Stuart. Don is an extremely talented and creative jewelry-smith and craftsman who just happens to be a friend of the family. We asked Don if he would make Jamie's urn. It won't so much be an urn as much as it will be more of a "condo". With all the ideas we came up with, I think it's going to be really neat. It seem kind weird to be excited about an urn for your child. But I can almost picture it. I'll wait until it's done and put a picture of it on the website.
Next weekend is Jacob's first birthday. Jacob is also a type 1 who has had more than his fair share of troubles this year, oh the trials of SMA. This disease is just so unfair. I had the opportunity to meet Jacob and his mom, Angela and his sister Alyssa at the Rebecca Run in July. Jacob is just so charming, sweet and very handsome! (www.caringbridge.org/canada/babyjacob)
I have to tell you, at the run I met some very great people and we have already become fast friends. Dave and Jennifer Loebach are parents to Angel Abby. Abby was a type 1 also, she passed away in October of last year (www.our-sma-angels.com/abbylynn). There are so many similarities between her and Jamie. They were the same age when they died, SMA is so not fair - it steals the most intelligent and beautiful babies. These kids are all just so special. The great thing about Angela and Dave and Jennifer is that we all live in Ontario! Thank goodness for email!! I also have another friend , from Cape Breton, Jisele and her husband Condon lost their son Bretton last September also to SMA type 1. Another very handsome boy! I want to wish Jisele good luck with the PGD! Here's to keeping our fingers (and toes, and whatever else...) crossed! We are all praying for healthy, SMA free babies.!! Don't get us wrong, I think I speak for all of us when I say that we would give anything to have our children with us, even to see them again for 1 more minute. We all love our children (here and departed) with all our being, but SMA is just too horrible of a disease to deal with again.! Good Luck, all
Friday August 6/04
It's been just over 6 months since Jamie died. I have been trying for months to come up with some sort of theme for her website. I am extremely happy with the way it has turned out. I would like to publicly thank Laura Stants for doing such a great job and for putting up with my indecisiveness, through the past months. She is a very busy lady doing a ton of website for parents and children of SMA. Thanks Laura for making this website so great!!
P.S. This coming Saturday, and every 2nd Saturday in August. There is a candle lighting for and in memory of children and adults for SMA. The candle lighting will take place at 8pm local time. Please light a candle in memory of the thousands of children who have lost their lives to SMA this year. Thanks Krista