Babies shouldn't die.
It seems to me like the Internet is filled with parents who have sick or dying babies. Or worse...babies who have already passed.
I missed my son today. I miss him every day, but today was not good. All it takes is one reminder and I am right back to the day Ethan passed. I'm still bleeding inside despite all of the distractions laid before me. Losing Ethan made me terrified of losing another child and I don't think I can handle that again. I hope and pray that my children will outlive me and not the other way around.
It hurts my heart whenever I remember how much Ethan went through. How afraid he must have been. How much pain he was feeling. Sometimes I lay awake and wonder why I couldn't save him. I hate when the house quiets down and I am the only one awake. I hate being alone with my thoughts.
Grief has left a feeling of vastness around me. No matter how much I try to cradle myself, my back still feels open to the world. I have many arms to embrace me, but Ethan's embrace is what I need right now. Lord, please help me overcome this feeling of despair!
I'd give anything to dream of him if only for one night.
Monday, June 22, 2009
Thursday, June 11, 2009
Silence...
The most painful thing that I have experienced in the past year is the silence that surrounds Ethan’s existence. I haven’t heard anyone utter his name in a while. The “how are you dealing?” questions have completely dissipated. Yes, it’s been 16 months, but it still hurts. I still think about how he would have been walking and talking by now. It’s almost as if he wasn’t here until I bring him back into existence. These days when I do mention my son, no matter what the subject is about, the tone of the conversation shifts to uneasiness.
Awkwardness ensues and life sucks all over again.
I don’t always mention sad things either. Sometimes I just mention how cute he was…IS and all I get is an awkward body shift and a quick response. I suppose it is because people just don’t know what to say. And, I can totally understand that. The biggest woe I’ve heard from other grieving parents is the fact that people DON’T mention their child. This is not an uncommon occurrence so I’m not too upset over it. I just hate that the mere utterance of his name directs people’s attention to the fact that he's gone, not to the random moment I am sharing.
He was HERE, but I still feel like a crazy person for bringing up his name.
I ALWAYS feel bad for making people uncomfortable whenever I talk about my “child that passed away”. I equally hate thinking of terminology that WON'T make people feel uneasy when I talk about him.
Sometimes, I just want to talk about my kid.
I realize that people are unsure of what my current state of mind is. Silence is to be expected, but it still really sucks. Perhaps people don’t want to make me sad so they avoid mentioning his name. Or maybe people simply think I’ve got bigger fish to fry now that Niki is living with the very same diagnosis that took Ethan’s life. Whatever the case may be, I just want to make it clear that talking or asking about Ethan isn’t going to hurt me.
It's the silence that does.
I’m not saying that I want to talk about him ALL the time. I’m just saying that I don’t want to ignore the fact that he was alive...even if it was ONLY for a week. So, please acknowledge him every so often. I know he’s gone and there isn’t much to say, but he was still here.
I miss him, ya know? But...I miss him even more when I feel like people don't feel comfortable acknowledging his existence. No more silence, please! I already think of him often anyway. So let’s just end all of the speculation, shall we? If you’ve ever caught me daydreaming, I can guarantee 99% of the time I’m thinking of him. I miss everything about him. Yes, I cry when I hear certain songs at church. Yes, I grieve for every missed milestone that I witness my “living” children pass. But…please don’t avoid mentioning him because you don’t want to hurt me.
I hurt enough.
I don’t care if it’s a memory of him in the NICU or the day that he passed, share it with me! Seriously, please do. I need some new memories of my boy.
Talking about him makes me feel better. :)
Awkwardness ensues and life sucks all over again.
I don’t always mention sad things either. Sometimes I just mention how cute he was…IS and all I get is an awkward body shift and a quick response. I suppose it is because people just don’t know what to say. And, I can totally understand that. The biggest woe I’ve heard from other grieving parents is the fact that people DON’T mention their child. This is not an uncommon occurrence so I’m not too upset over it. I just hate that the mere utterance of his name directs people’s attention to the fact that he's gone, not to the random moment I am sharing.
He was HERE, but I still feel like a crazy person for bringing up his name.
I ALWAYS feel bad for making people uncomfortable whenever I talk about my “child that passed away”. I equally hate thinking of terminology that WON'T make people feel uneasy when I talk about him.
Sometimes, I just want to talk about my kid.
I realize that people are unsure of what my current state of mind is. Silence is to be expected, but it still really sucks. Perhaps people don’t want to make me sad so they avoid mentioning his name. Or maybe people simply think I’ve got bigger fish to fry now that Niki is living with the very same diagnosis that took Ethan’s life. Whatever the case may be, I just want to make it clear that talking or asking about Ethan isn’t going to hurt me.
It's the silence that does.
I’m not saying that I want to talk about him ALL the time. I’m just saying that I don’t want to ignore the fact that he was alive...even if it was ONLY for a week. So, please acknowledge him every so often. I know he’s gone and there isn’t much to say, but he was still here.
I miss him, ya know? But...I miss him even more when I feel like people don't feel comfortable acknowledging his existence. No more silence, please! I already think of him often anyway. So let’s just end all of the speculation, shall we? If you’ve ever caught me daydreaming, I can guarantee 99% of the time I’m thinking of him. I miss everything about him. Yes, I cry when I hear certain songs at church. Yes, I grieve for every missed milestone that I witness my “living” children pass. But…please don’t avoid mentioning him because you don’t want to hurt me.
I hurt enough.
I don’t care if it’s a memory of him in the NICU or the day that he passed, share it with me! Seriously, please do. I need some new memories of my boy.
Talking about him makes me feel better. :)
Thursday, June 4, 2009
Over Protection...
I’ve feverishly scoured the internet since Ethan’s passing. Factor VII Deficiency wasn’t new to me when Niki was diagnosed yet I was still poorly prepared when she was born. I knew all about the condition, but I didn’t know how to manage it when she was born. I simply didn't think it would happen again. Or rather...I was in denial I guess. Now, I have to learn how to RAISE a child with a chronic disorder. Parenting books about how to raise a child with hemophilia have become my new best friend. Reading the entries other “blogger moms” of children living with hemophilia have also been a staple for me. Even though Niki doesn't have Hemophilia A or B (deficiencies in factor 8 or 9) the struggles are the same. Bleeding still happens. Life just sucks sometimes.
But hey, knowledge is power, right?
This whole quest has been a catch 22. I want to be ready for the future. I seek information to better prepare myself for Niki’s sake, but the more I learn, the more I become afraid. I’m sure everything will be fine because I have trust in God, but I’ve read so many horror stories (and lived through my own) that it’s difficult to NOT be worried. I can’t help it! Ignorance truly is bliss sometimes.
I don’t want to treat her differently, but I find myself falling into that pattern. I’ve become a “helicopter parent” (a term coined by the hemophilia community) and I constantly hover over her. I just want to protect her, ya know? I'm constantly watching for bleeds. Oh, how I fear the inevitable! Her bleeding pattern will emerge soon and I am terrified. Her small GI bleed already freaked me out, what more for a joint bleed? Or worse, a head bleed? How can I possibly raise a strong, confident woman if I keep acting like Nemo’s dad? I watched the Pixar classic a few days ago and it really struck a cord. I really should stop treating Niki like she has a gimpy fin.
Mama's got a LOT more learning to do.
But hey, knowledge is power, right?
This whole quest has been a catch 22. I want to be ready for the future. I seek information to better prepare myself for Niki’s sake, but the more I learn, the more I become afraid. I’m sure everything will be fine because I have trust in God, but I’ve read so many horror stories (and lived through my own) that it’s difficult to NOT be worried. I can’t help it! Ignorance truly is bliss sometimes.
I don’t want to treat her differently, but I find myself falling into that pattern. I’ve become a “helicopter parent” (a term coined by the hemophilia community) and I constantly hover over her. I just want to protect her, ya know? I'm constantly watching for bleeds. Oh, how I fear the inevitable! Her bleeding pattern will emerge soon and I am terrified. Her small GI bleed already freaked me out, what more for a joint bleed? Or worse, a head bleed? How can I possibly raise a strong, confident woman if I keep acting like Nemo’s dad? I watched the Pixar classic a few days ago and it really struck a cord. I really should stop treating Niki like she has a gimpy fin.
Mama's got a LOT more learning to do.
Wednesday, May 27, 2009
On Edge...
I'm watching Niki like a hawk right now. As a matter of fact, I'm holding her as I type this entry.
I suspect that she had a little GI bleed shortly after we came home. She had a bit of blood in her spit up (twice!) and it was not fun. (For me, anyway.) Today was a "no factor day" (NFD) so I know her FVII level is low. Factor VII has a very short half-life and only lasts about 3-4 hours in the body. I'm always on edge when it's a NFD because I feel like she's swimming without a life jacket!
She is definitely not teething so the blood surprised me. (Some babies with hemophilia will bleed once their teeth start to cut.) One can only surmise that she's having a dreaded GI bleed, right? Naturally, we were concerned so we contacted the hematologist on-call. The doctor advised us to give Niki her factor (which we promptly did) and she was cranky ever since. My poor girl JUST fell asleep. Niki is a laid back baby and this is the first time I can honestly classify her crying as inconsolable. This, of course, placed me on "red alert". Unfortunately, this also turned out to be the time that John had to go to work. He helped me calm her down, but I was not feeling very confident about her crying episode. She hardly ever cries. I could've blamed her unusual behavior on "normal baby stuff", but I don't EVER disregard anything anymore. I learned my lesson. Besides, the last time John had to go to work when one of our babies was "acting funny" didn't turn out so well.
That was the night Ethan had his head bleed.
Hopefully, my paranoia is justifiable because I often second guess myself. Niki is fine and I know this. She's finally sleeping and her factor likely stopped the bleed, but I'm still a nervous wreck. I'm a nut, I know. I suppose I just need to get used to the idea of the inevitable. She's gonna bleed! We just won't know when. Even though her hematologist says that Niki's presenting as a "mild" so far, the fact that she's a "severe" like Ethan continues to keep me on edge. She was born without FVII just like Ethan was. However, I do find some comfort in the fact that she's getting her prophy (preventative treatment) dose of factor. I'm not a fan of her Broviac, but it sure is convenient when we need to give her factor! BTW - Get used to the medical jargon folks, it's here to stay! Side note: Hemophiliacs can have symptoms that present as a "true severe" (frequent bleeds) or have symptoms that present as a "mild" (minimal bleeding). Ethan was a true severe, obviously.The only reason why she "presents" as a mild is because she has prophy, but I have no doubt in my mind that she's a true severe like Ethan.
Meanwhile, I just can't wait until she can tell me when she's having a bleed.
I suspect that she had a little GI bleed shortly after we came home. She had a bit of blood in her spit up (twice!) and it was not fun. (For me, anyway.) Today was a "no factor day" (NFD) so I know her FVII level is low. Factor VII has a very short half-life and only lasts about 3-4 hours in the body. I'm always on edge when it's a NFD because I feel like she's swimming without a life jacket!
She is definitely not teething so the blood surprised me. (Some babies with hemophilia will bleed once their teeth start to cut.) One can only surmise that she's having a dreaded GI bleed, right? Naturally, we were concerned so we contacted the hematologist on-call. The doctor advised us to give Niki her factor (which we promptly did) and she was cranky ever since. My poor girl JUST fell asleep. Niki is a laid back baby and this is the first time I can honestly classify her crying as inconsolable. This, of course, placed me on "red alert". Unfortunately, this also turned out to be the time that John had to go to work. He helped me calm her down, but I was not feeling very confident about her crying episode. She hardly ever cries. I could've blamed her unusual behavior on "normal baby stuff", but I don't EVER disregard anything anymore. I learned my lesson. Besides, the last time John had to go to work when one of our babies was "acting funny" didn't turn out so well.
That was the night Ethan had his head bleed.
Hopefully, my paranoia is justifiable because I often second guess myself. Niki is fine and I know this. She's finally sleeping and her factor likely stopped the bleed, but I'm still a nervous wreck. I'm a nut, I know. I suppose I just need to get used to the idea of the inevitable. She's gonna bleed! We just won't know when. Even though her hematologist says that Niki's presenting as a "mild" so far, the fact that she's a "severe" like Ethan continues to keep me on edge. She was born without FVII just like Ethan was. However, I do find some comfort in the fact that she's getting her prophy (preventative treatment) dose of factor. I'm not a fan of her Broviac, but it sure is convenient when we need to give her factor! BTW - Get used to the medical jargon folks, it's here to stay! Side note: Hemophiliacs can have symptoms that present as a "true severe" (frequent bleeds) or have symptoms that present as a "mild" (minimal bleeding). Ethan was a true severe, obviously.The only reason why she "presents" as a mild is because she has prophy, but I have no doubt in my mind that she's a true severe like Ethan.
Meanwhile, I just can't wait until she can tell me when she's having a bleed.
Tuesday, May 26, 2009
Touching base...
So much for posting everyday...
My apologies for being M.I.A., but I've been pretty busy with the kids. I seriously don't know how all the other "blogger moms" do it! I has been virtually impossible for me to post daily. Tips anyone? Meanwhile in my neck of the woods...
-Niki had her ears pierced on a "no factor day" and was completely bleed free!
-Kev is *almost* done with Kinder. School ends on 6/4.
-Boo is still Boo. Cute, cuddly, and chaotic! :-)
The big move is only a few short weeks away and I'm slowly coming to terms with it. I'm also starting school in four weeks so I'm trying to make the most of my freedom. Juggling work, school, and kids will reign supreme once again, but at least we have our health right?
Sorry for the short post, I'm lazy. I'm off to cuddle with my warm hubby now. G'nite.
My apologies for being M.I.A., but I've been pretty busy with the kids. I seriously don't know how all the other "blogger moms" do it! I has been virtually impossible for me to post daily. Tips anyone? Meanwhile in my neck of the woods...
-Niki had her ears pierced on a "no factor day" and was completely bleed free!
-Kev is *almost* done with Kinder. School ends on 6/4.
-Boo is still Boo. Cute, cuddly, and chaotic! :-)
The big move is only a few short weeks away and I'm slowly coming to terms with it. I'm also starting school in four weeks so I'm trying to make the most of my freedom. Juggling work, school, and kids will reign supreme once again, but at least we have our health right?
Sorry for the short post, I'm lazy. I'm off to cuddle with my warm hubby now. G'nite.
Subscribe to:
Posts (Atom)