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September 26 We are a Non-Profit Organization!!So, it's really, really happening. We are - as of Sept. 14th - a non-profit organization. AND...it will take 8 months to file for our tax exempt status....so on May 15, 2010 we will be filing. How can that really happen like that??!! That's amazing.
So, I'm really, really happy and of course, just a little bit sad. Today, I heard the Elton John song on the radio - You'll Be in My Heart from the Tarzan movie - it's my song for Connor. And here comes the tears....I still miss him so much that it breaks my heart over and over again. I know time is supposed to heal all wounds and yes, in a way it does....well, it just moves you away from the pain, dulls it a bit but there are moments that it can hurt like it did the first day. The grief, nine years later, can still take my breath away.
So I'm happy that we have Connor's Books and look forward to all of the wonderful things we can do with it but it wouldn't exist if he were here. I am always reminded of that. But I guess that's the way so many good things start out - out of the darkness comes light, comes hope. Where would breast cancer be if Susan G. Komen had lived?
So yes, I'm so happy that we are finally a non-profit but so sad that I had to lose my son for it to happen. Once again, a bit of sad/happy....I should be used to that by now. May 12 Sometimes I need a big brother....This is what my seven year old daughter told me the other day. She misses Connor and says sometimes I need a big brother. Ugh. I felt as though someone punched me in the stomach. I am reminded what we have all lost. Yes, she deserves a big brother - someone to watch over her and play with her, someone to tease her and make her crazy, someone to make her the little sister. And sometimes I need my son. My nine year old boy with his big brown eyes and ... I don't even know what because I don't know what he'd be like or what he'd look like. 14 hours. That's all I had with him and most of that I wasn't with him. I remember seeing him in that bassinett - all laid out and not swaddled like a newborn. I remember wanting to shrink myself down and crawl into that little tiny bed and hold him, touch him...be with him.
Nine years ago today my water broke. I had no idea what was about to happen. I thought I was finally going to meet my baby and become a mother. I knew life would change but never, never expected for my son to die. Not for one moment, not when the doctors and nurses warned me, not when my husband broke down and cried, never did I think Connor would not make it until the doctor looked at me and said, "He's gone".
A friend asked me today how I was doing - I felt fine until she asked that question and realized I was not fine. My son is gone and I will miss him forever and it hurts and it's not fair and I wonder why me? It sucks and nine years later it still sucks.
I know how lucky I am to have four healthy children. And now two boys to love and to play with it, to be a chance to be a mom to a boy. But this hole in my heart where Connor should be can never be filled up. It will always be there and some days, like today, it feels so big and empty and I ache for my boy.
This is usually where I turn it around and think about all of the good, the lessons learned, blah, blah, blah ...not today, today I just miss him...for me, for Matt and for his little sister who needs a big brother sometimes. May 01 HELP US BECOME A NON-PROFIT ORGANIZATION!!Who knew that way back in Kindergarten when we received a flyer about girl scouts and I asked Emma if she was interested we would end up here?!! The response from the girl scouts has been INCREDIBLE. We don't have a final number yet and hopefully this darn flu won't ruin everything but we are looking at close to 3,000 books. Yep, 3,000 BOOKS !!!! The response has been so wonderful. The girls have been so excited and some are doing their very own book drives at their schools. Outstanding!! We had our own book drive with our troop and there I was with the girl scouts holding up signs that read Connor's Books as they chanted Connor's Books, Connor's Books. How could I have ever imagined that? It's so very amazing that my little boy, who lived such a short amount of time is making a difference. He is inspiring others to do great things and is bringing such joy to so many children. As always, I just don't have the words to describe what this means to me. As Connor's mother I was so fearful that since he lived only 14 hours that he would be forgotten, that the world would simply go on without him. But now, because of so many wonderful people, I know that will not happen. I know that his star really will forever shine brightly.
From the day we started Connor's Books, my dream has been that we would be able to become a non-profit organization. Each year, I think about asking for money instead of books but I just can't. I hate the idea of not having books to deliver to Scottish Rite Hospital on his birthday. But...this year... because of the wonderfulness of the Girl Scouts we have so many books to deliver....I'd like to ask for your help. Next year will be Connor's Tenth Birthday and becoming a non-profit would be a perfect way to celebrate! There is so much more we want to do.
Please consider donating money to Connor's Books to help us become a non-profit organization. You can do this on the website through PayPal or by mailing us a check (payable to Connor's Books). Email me at connorsbooks@hotmail.com for the address. You can even donate in memory or in honor of a loved one - just click on Donation Stars at www.connorsbooks.org to do this.
Thank you.
March 04 Yeah for Girl Scouts!!!!Thank you so much to Emma's Troop Leader, Pam who has so generously offered to help collect books for Connor's Books this year. Last night, we were invited to speak at the Service Unit Meeting. We can't wait to see how many books will be collected. In fact, the leader offered a pizza party to the troop who collects the most books!! Yeah!!
We are also having Connor's Books patches made up for the girls to earn. Looking forward to seeing those!!
I'm constantly amazed at people's generosity and their willingness to become involved with Connor's Books. Again, we couldn't do this on our own. Each time more people donate and more books are collected I can feel Connor's star shine even brighter and I know that he will not be forgotten. A smile can emerge through the tears. Our little one who spent only 14 hours on this earth is making a such difference in other children's lives.
Once again, thank you. August 27 Connor's BrothersHey guys - just wanted to let you know that everything went well on our 16 week sonogram. The boys (yes, still boys and YES, still just two!!) were wiggling around so much the dr. had a hard time trying to get all of the measurements. He said they were already wrestling one another for space!
They checked for CDH, heart problems, brain, etc, etc - all normal! Yeah! No twin to twin transfusion (which is a risk for identicals). So far so good. I will go for sonograms once a month so it will be a great way to get to know our little guys! Looks like their names will be Cooper and Wyatt. Please keep our little guys in your prayers. Twins tend to come early so we are hoping they will stay in there as long as possible to avoid a long NICU stay. We did tour the NICU (where Connor was but has since been completely redone - thank goodness). When we met the nurse (who was so great - she was one of Audrey's nurses and Jenn hooked us up - thanks!!) who was going to tour us around, I was telling her about us and she said I know Connor. I was there, I worked on him. I had not expected that! My eyes immediately filled with tears and felt so emotional b/c there are so very few people on this earth that got a chance to know him. Anyways, it was a great reminder that he will be watching over his brothers!! They will schedule our c-section for the week of Jan 19th - I'll be 37 weeks which is considered for full term for twins. The goal is to get to 35 weeks! August 05 Oh Connor!! What a funny jokster you are! Yes, we found out today what you have known all along....mommy is having twins!! Identical twin boys!! Yes, that is hilarious!! You must have thought that so funny when I wrote the other day that mommy needed just one more. Yes, people. Twins. Identical. Boys. No matter how many times I say it/type it... it doesn't become any more real. Right after the gasp of shock I let out at the sonogram, I said but my best friend has twins. Yes, my best friend has Identical twin boys...seriously, what are the chances??!! Not possible. We are of course thrilled, shocked, scared, excited....shocked. We are going to go from a family of four to a family of six. Matt and I sat on the couch last night and I looked at him and said we are going to have four kids. He just laughed out loud! So, there you go. Please say a prayer for our little boys. Now we have two babies to worry about. And it makes me miss my dad even more. He LOVED babies. Loved holding them and snuggling them and feeding them bottles. Oh how he would have loved these boys. And oh how we could have used the extra set of hands! August 02 More Work for ConnorWell, Connor has another sibling on the way to watch over. We are expecting another baby in February. I am beyond happy, excited and terrified. I am so very blessed with two healthy girls. I feel as though I am pushing the envelope a bit. But then I think why not me? Why can't I have the big family I have always dreamed about? Today, I saw a mom with six, yes, SIX kids and I thought...if she can have six strong healthy kids, can't I have just one more? please... The girls are thrilled. Well, Kate is thrilled....so excited about finally getting to be a big sister. She talks to my tummy and rubs her baby. Emma, well she has some concerns about being a big sister to two because as she says, being a big sister can be difficult. I think oh please, please let them have this baby. Please don't take this away from them. Please don't make them grieve another sibling. Okay, I know I sound more of a basket case than I am. I really spend most of my time being excited and a little nervous about doing all of this again. There are just these moments when I think of all of the things that can go wrong. I try not to stay there for long. On Monday, we have our nuchal scan sonogram and I guess I'm feeling a bit nervous. But so excited to see my little one on the screen. As usual, we got off to a rough start and we had a sonogram around six weeks. Seeing that tiny heartbeat on the screen took my breath away. That never gets old. What a miracle. There is a little life growing inside me. Amazing. So, Connor, please watch over this little one. I know your sisters keep you busy, especially you know who but take care of this little one. Mommy needs just one more. July 19 Another Angel Gets His WingsBaby Seth lost his battle with CDH this week. Please keep his parents, April and Russell in your prayers. My heart breaks for them as I think of the journey that lies ahead. It is so hard to remember those early days of blinding grief. I remember once sitting on the couch, sobbing and Matt holding me and I literally did not think I could take my next breath. It just seemed too hard, too pointless. I looked around my all too quiet, too clean house and felt so empty. My arms ached for the baby that never came home. As I read about yet another family who is forced to go through this experience, I think when will it end? Who knows or if it ever will. Lately, I find myself reading more and more amazing stories of CDH babies not only surviving but thriving I am filled with hope and then for a moment I forget.... until I read of another baby dying and it all comes back. This is a horrific, devastating birth defect that leaves no one unscathed. So please take a moment to say a prayer for all CDH families to find the strength to take that next breath. May 15 HAPPY BIRTHDAY, CONNOR!!!796 BOOKS!!! Yeah!! And 93 BEARS!! - way to go Emma!!
Thanks so much to everyone for their wonderful donations. As always we received some amazing books. And as always, SRH was so kind and appreciative and happy to see us. I cannot express to you how much we love those people. They get it. They get what this means to us and they never disappoint. The girls received some adorable bears. Kate said she was going to name her bear Connor. And even though "Connor" later became "Angelina" it was a very sweet moment. Here are some pictures from the day. After we donated the books, we went to their park to let the girls play.
Happy Birthday, Connor. Eight years. Hard to believe but I know I say that every year. Thank you for choosing me as your mom. Thank you for helping me to become the person I am today. Thank you for always shining brightly in our lives. I love you...I miss you...forever. May 04 Happy Birthday, Audrey!! Today is Audrey's 2nd birthday. You can read all about her on her mom's blog. And she was recently written about in a local magazine. Click on "Praying for Normal". Audrey was born with CDH - the same horrible defect that took our Connor. I met her mom through my best friend. I remembered she wanted to meet me right after she was diagnosed during her pregnancy to find out more about CDH. I was so nervous about meeting her. I was, after all, her worst case scenario. In my experience, CDH babies died. As I sat across the table from Jenn, I really had very little to tell her about this birth defect. We were diagnosed at 34 weeks. My water broke on May 12, I heard about CDH for the first time on May 13, Connor was born May 15 and died May 16. And from that moment on, I was just trying to survive the death of my son. I knew CDH took my son. I knew they didn't really know why it happened. I was just trying to find the strength to take my next breath. Then several years later, I nervously joined an online support group of non-survivor and survivor moms. I didn't know if I could do it. These women had their children, I didn't. Could I handle it? It was there that I finally learned, really learned about how horrible CDH is. No one just walks out the hospital fixed. As I read about these moms with CDH kids, I realized they had their own journey of grief. Grief of not having a perfectly normal healthy child. Grief of seeing your child endure a seemingly never ending list of medical procedures. The grief of never really knowing what the outcome will be. It was a light bulb moment for me when one of the survivor moms talked about how hard her son's birthday was. How could that be?, I thought. Your son is living, he gets birthday parties and birthday cakes. But each year on her son's birthday, she relived his birth. Just as I did. The hospital stay, the NICU, doctors telling you that your child will die. Just because your child comes home from hospital doesn't mean that you forget. It doesn't make those memories any less painful. So when I met Audrey's mom - five years after we lost Connor - I was in a different place. I'm not sure if I met Jenn in my early days if I would have had the strength to get to know them. But I'm so glad I am now. When I look at Audrey, I see this amazing little girl so full of life, determination and strength. And just recently when I read the magazine article of her birth, I was reminded what this family went through. It is an amazingly unbelievable journey. And I believe in some weird way, we were supposed to meet - our babies were both born in May, both with this rare birth defect, both wonderfully shining little stars. And it is through her, I'm finally learning about CDH and it what it might have been to live with this disease. Although when I look at Audrey, I just see her. This beautiful little girl with an infectious laugh who has truly defied the odds and I can't wait to see what she does next. So, Happy Birthday, Superstar Audrey!!! May 01 It's Time for Connor's Books!Hi Everyone. It's that time of year again - time to start rounding up those books! It's hard to believe that it is our eighth year and because of you we are getting bigger every year. You may donate books or money for books. You can send me a check or donate by paypal on Connor's Books website. Look for the star on the left side of the screen that says Make a Donation or click here.
If you are donating books, please make sure they are GENTLY used. The hospital puts them in a welcome bag for each new patient so we want them to have plenty of great books to give away! They need books for kids 0 - 17. They are happy to get all types of books but their greatest need is board books for toddlers and chapter books for teenagers. Check out my list of bestsellers! As always, I cannot say enough wonderful things about Scottish Rite. They have been so kind and appreciative. They get so excited to go through the boxes of books because they say we always bring them the best books.
We need all money and books by Monday, May 12th so that we may deliver them on Connor's birthday, May 15th.
If you would like to donate in memory/honor of someone, please let me know. We can put that on the sticker that will go in the books.
Also, this year we have an exciting addition to Connor's Books......
EMMA'S BEARS!!
Connor's litte sister, Emma has decided that in addition to books, "the children need something to snuggle up to in the hospital". So, she will be collecting stuffed animals this year. She mentioned that they didn't need to be bears but anything soft. (I'm so very proud of her!!)
As always, thank you from the bottom of my heart for all of your help in making Connor's Books a huge success. You will never really know what it means to me. Because of you, our little Connor will forever shine brightly by bringing comfort to other children. Thank you.
You can read all about us, Connor's story and Scottish Rite at www.connorsbooks.org You may email me directly at connorsbooks@hotmail.com
Thanks Everyone!! April 27 Relay for LifeOn Friday, we attended the American Cancer Society's Relay for Life. We did a luminaria for my dad who died from kidney cancer in June. They lined the track with the lights and to encourage people to observe a moment of silence they had the girls dressed as Hush Angels. Despite the fact that I spent most of the night choking back tears and dodging teenagers, it was a good experience. I look forward to forming our own team next year. So, get ready Team Schlitz! April 24 Here you go, Jenn...So, I have been tagged by Jenn The rules: A. Link to the tagger and post these rules on your blog. B. Share 7 facts about yourself on your blog, some weird, some random. C. Tag 7 people at the end of your post by leaving their names as well as links to their blogs. Lastly, let them know they are tagged by leaving a comment on their blog. So, here goes: 1. I secretly would love to be a lead singer in a rock band. And through the greatness of Rockband (thanks to the Miller Fam for inspiration, my husband is eternally grateful) I get a chance. Although most of time I have to just be the guitar player because my six year old always wants to sing - but every so often I get my chance, baby! 2. I love to travel. I backpacked across Europe for two months after college and I've been to Scotland/England (honeymoon) and Italy with my husband. Can't wait to take the girls. 3. I have to steal this one from Jenn - but I totally do the same thing - say things I shouldn't when the kids are in the other room. I NEVER, EVER say it to their adorable little faces but there's just something about it that helps me get through the day! Another call to CPS, go ahead. 4. No murder trial but I did have to sue my wedding photographer in small claims court to get our pictures. 5. I hate being late but I always am. 6. I watch The Daily Show with Jon Stewart every day - love it! 7. I'm really 5'2" but I always put 5'3" on my driver's license. 5'3" just sounds better plus if the law is ever after me, they will be looking for someone taller! Okay, there! I have no one else to tag since you tagged all the bloggers I know! March 31 CDH Awareness Day So, by special proclamation in Texas, today is CDH Awareness Day. I'm not really sure what that means or what it is supposed to mean. What I would like for it to mean is that when a pregnant mom is getting a sonogram she asks if she can see her baby's diaphragm and for the sono tech to know what he/she is looking for. What I would like for it to mean is that when a CDH baby comes into this world, the doctors are prepared and the parents have heard of CDH. But what I really want is for CDH to no longer exist and there would be no need for anyone to be aware of it.
CDH stole my son away. It ripped a hole in my heart that will never heal. Having a child die from a birth defect that no one, not even some medical professionals, has heard of feels very lonely. I feel separated from the rest of the world. CDH? Oh, that must be rare because no knows about it. In fact, it happens about as often as Cystic Fibrosis and everyone has heard of that. I think we haven’t heard about because most of the babies die from it. And because of moms like me. I haven’t been getting the word out or to be honest, learning about CDH. I don’t know all that much about it. I know it took my son and I’ve just been trying to survive. But because, we do have more babies surviving now perhaps more people will learn about CDH. Just enough to ask about it. Just enough to be aware. March 03 Being in the PresentSo, I read somewhere that losing a child is losing your future and losing a parent is losing your past. My father lost his battle to kidney cancer in June 2007. I lost Connor in 2000. I'm 37 years old and have lost my past and my future. Which in a weird karma kinda way is a perfect life lesson for me. I have always had trouble staying in the present. I lament over the past and worry about the future. Today sucks but tomorrow will be so much better. I'll be a better mom, better wife, better friend, better dieter....but tomorrow always seems to end up pretty much like today. Losing Connor was, of course, devastating. I still wonder how can it hurt this much to lose someone I didn't really know. When we lost my dad, I thought okay, I've been down this grief road before I can do this. It is horrible and awful but I can do it. It's been 9 months and I still can't seem to make it fit. It's like trying to put on a jacket that just doesn't feel quite right. I think about my dad and still catch my breath. How can he really be GONE? How can he really not EXIST? It's not right, I keep thinking I will wake up from this dream, it just a bad dream but I can't. He was here and now he's gone. And he was a really, really great person. A great dad. Not perfect but I do not know where I'd be or who I'd be if he hadn't been my dad. You see, he wasn't really my dad. He was my stepdad. He came into our lives when I was 9. I didn't accept him for a long, long time. Like most kids, I wanted my parents back together. I wanted my real dad to want me. So many years I waited, I wasted for my "real" dad to be a part of my life. And there was Ron, taking care of me, my family, providing for us, being a dad. He was the kind of man that would do anything for anyone. Really. I know people say that about other people all of the time but he really was like that. Do anything for anyone without hesitation. He was kind to everyone....our waiter who was waiting tables for the first night. He was in so much pain from chemo, etc but I always remember he took the time to tell him what a great job he was doing. People would walk into to our house for a visit and ask him how he was doing...."Can't complain" was always his answer. Can't complain??!! The man was in so much pain I cannot even begin to imagine...he was DYING...but he didn't want to put anyone out, always wanted to make the other person feel at ease. With Connor, missing him is like missing a dream, what could have been...a perfect little boy with brown hair and brown eyes. But I don't really know him, my son. Would he have been a good sleeper? thumb sucker? good at sports? quiet or crazy? What would it have been like to be a mom to a boy? But my father, I knew. I can close my eyes and picture him, hear his laugh. I hear his voice in my head all of the time. I can almost see him standing in front of me, sitting in my car....like he did so many times. But now he's gone and he will never laugh or sit in my car or hug me or my girls. How do I get used to that? How do I get used to hearing my girls miss their Pop? How do I get used to him not being a part of their lives? How do I get used to the fact they are getting cheated out of him loving them in a way only a grandpa can? How do I live in the present when the present sucks? Whew....what a nice little pity party I have thrown myself. Now, my dad...he'd want me to pick myself up and move on. He'd hate that his death would have been so hard....would have troubled us...the man didn't want to trouble anyone. He'd want me to work hard and play hard and enjoy life, love my girls, spend time with my brothers, take care of my mom, appreciate my husband and keep my floors clean. And Connor....well, it'd be just a guess but I'm pretty sure he'd want me to be happy...because we all know that when mama ain't happy, nobody's happy... November 12 Grief....Seven Years LaterSometimes, it's hard to believe that it's been seven years since we had our son, Connor. I remember first posting on Cherubs and there were moms there who had lost their children five years ago - wow, I wondered....what would life be like five years, ten years, later? At that point in my grief, I couldn't imagine what the next day would be like, much less the next year.
Now, this will be the seventh Thanksgiving without Connor. It's hard to not spend at least a little time wondering what life would be like if he had lived. What would he have looked like? What kind of kid would he have been? What would our lives be like? The other day we were at my nephew's soccer game. In the field next to his, I heard someone yell out, "Connor!" I looked over and realized it was a bunch of seven year old boys running around on the soccer field. It hit me. That could have been my Connor. My eyes immediately filled with tears. I was so taken aback by that. I hear the name Connor all of the time. In the beginning, when I heard it I felt like someone punched me in the stomach. It literally took my breath away. But as the years passed, the pain lessened. So I was suprised by my reaction the other day, but in those moments, I realize how this grief will follow me forever. It may not always be the biggest part of me, but it will always be with me. My son. I barely knew you but my heart aches for you, always... The tears never dry up.
And so this is why I do Connor's Books. To honor my son. To make the world a better place because of him. Because I hope to be a better person because of him. Because even though he lived for only 14 hours, I want the world to know of him - to know how special and wonderful he was. Because he deserves to not be forgotten. I want a child to hold a book from Connor's Books in their hand and feel special, feel loved because of Connor. September 15 Welcome to Connor's Books!Hello! Welcome to the blog for Connor's Books! I thought this would be a great way to let everyone know what's happening with Connor's Books. If you would like to read our story, please go to www.connorsbooks.org. |
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