March.......
which is the month before April...
Makily's birthday is April 1.
She will be FOUR!
Most parents rejoice at the upcoming birthday of their child.
Usually I struggle with it.
I remember the JOY I felt all through March of 2004. How elated I was, my baby was finally coming.
Today my grandmother showed me something that I gave her on the day we told her we were pregnant. It was a small gift bag with a pacifier in it. She has kept it and even put a sticker with the date and time I came to tell her.
I couldn't do anything but look at it and cry.
It reminds me of what a happy yet OBLIVIOUS person I used to be.
I am doing another montage for Makily's birthday this year. I pulled out ALL the pictures (we didn't go digital until she was four months), even the bad ones. I sat on the floor in her room and cried.
She looks so bad in some of them.
I will never forget.
ANGER, SADNESS, CONFUSION, SELF DOUBT, EMBARRASSMENT, GUILT, SHAME, GRIEF, HATE, JEALOUSY, FRUSTRATION, LONELINESS, SORROW.
If you bundle all those emotions into one word, that was me back then.
While I am happier than I have ever been in my life, it seems like EVERY March I find myself re-living it all in my head.
As much as I want to be over it and move on, I realize most likely that will never happen.....
....and that's okay.
I wonder what might have been.
Then I remember this IS the way my life is supposed to be and I am a BETTER person because of ALL that we have watched Makily go through. She has changed more people and touched more lives in four years than I have in 30.....and she can't even talk.
I can't make myself NOT feel this way, so I will be sad for a few weeks, and then I will pull my head out of my behind and move on. I did it last year and each birthday before that.
I have also been following Baby Reese, she is four months old. She has Emanuel Syndrome and has yet to leave the NICU. Some of her pictures she reminds me so much of Makily. She had the SAME skin tag on the same cheek as Makily. I look at the pictures of her, I read their blog and it just takes me right back to that place of such fear and uncertainty. I remember telling myself "If we can just get Makily through this....we'll be okay." Then something else would happen and I found myself again wondering when we could relax. Since then I often lay Makily's head on my shoulder and breathe in as hard as I can and try to memorize her smell. When I hold her while she is sleeping I just stare at her and I try to memorize every feature of her face, the way her hair feels when I rub her head, the way she curls up in my arms and makes sleepy baby noises in her sleep.
When Makily had her seizure back in 2006 , I really thought we were going to loose her. I remember standing in the ER watching her body slowly twitching. I could see the doctors struggling to intubate her. I could hear her coughing and gasping for breath and thinking "I am not ready yet". I haven't held her enough, I haven't smelled her baby smell enough times or heard her sweet voice or laugh enough.
The truth of the matter is that you NEVER know what to expect with Emanuel Syndrome children. I know of some ES kids that were doing exceptionally well and then the died out of no where.
They are unpredictable....but I guess life itself is unpredicatable.
Makily's seizure scarred me and when she is at school, if the nurse calls me, I hold my breath until she says "she's okay". I honestly don't know if her body could handle another seizure like that and in the back of my mind, the thought of something happening is always there.
I know I will never hear her laugh enough, stroke her head enough or smell her sweet Makily smell enough to ever be okay with loosing her.
I can never totally breathe a sigh of relief with her.
It's an uncertainty that I will carry with me forever.....
......and that is incredibly hard.
Please pray for Baby Reesie and her family as they live through some
of the most difficult times of their lives.
which is the month before April...
Makily's birthday is April 1.
She will be FOUR!
Most parents rejoice at the upcoming birthday of their child.
Usually I struggle with it.
I remember the JOY I felt all through March of 2004. How elated I was, my baby was finally coming.
Today my grandmother showed me something that I gave her on the day we told her we were pregnant. It was a small gift bag with a pacifier in it. She has kept it and even put a sticker with the date and time I came to tell her.
I couldn't do anything but look at it and cry.
It reminds me of what a happy yet OBLIVIOUS person I used to be.
I am doing another montage for Makily's birthday this year. I pulled out ALL the pictures (we didn't go digital until she was four months), even the bad ones. I sat on the floor in her room and cried.
She looks so bad in some of them.
I will never forget.
ANGER, SADNESS, CONFUSION, SELF DOUBT, EMBARRASSMENT, GUILT, SHAME, GRIEF, HATE, JEALOUSY, FRUSTRATION, LONELINESS, SORROW.
If you bundle all those emotions into one word, that was me back then.
While I am happier than I have ever been in my life, it seems like EVERY March I find myself re-living it all in my head.
As much as I want to be over it and move on, I realize most likely that will never happen.....
....and that's okay.
I wonder what might have been.
Then I remember this IS the way my life is supposed to be and I am a BETTER person because of ALL that we have watched Makily go through. She has changed more people and touched more lives in four years than I have in 30.....and she can't even talk.
I can't make myself NOT feel this way, so I will be sad for a few weeks, and then I will pull my head out of my behind and move on. I did it last year and each birthday before that.
I have also been following Baby Reese, she is four months old. She has Emanuel Syndrome and has yet to leave the NICU. Some of her pictures she reminds me so much of Makily. She had the SAME skin tag on the same cheek as Makily. I look at the pictures of her, I read their blog and it just takes me right back to that place of such fear and uncertainty. I remember telling myself "If we can just get Makily through this....we'll be okay." Then something else would happen and I found myself again wondering when we could relax. Since then I often lay Makily's head on my shoulder and breathe in as hard as I can and try to memorize her smell. When I hold her while she is sleeping I just stare at her and I try to memorize every feature of her face, the way her hair feels when I rub her head, the way she curls up in my arms and makes sleepy baby noises in her sleep.
When Makily had her seizure back in 2006 , I really thought we were going to loose her. I remember standing in the ER watching her body slowly twitching. I could see the doctors struggling to intubate her. I could hear her coughing and gasping for breath and thinking "I am not ready yet". I haven't held her enough, I haven't smelled her baby smell enough times or heard her sweet voice or laugh enough.
The truth of the matter is that you NEVER know what to expect with Emanuel Syndrome children. I know of some ES kids that were doing exceptionally well and then the died out of no where.
They are unpredictable....but I guess life itself is unpredicatable.
Makily's seizure scarred me and when she is at school, if the nurse calls me, I hold my breath until she says "she's okay". I honestly don't know if her body could handle another seizure like that and in the back of my mind, the thought of something happening is always there.
I know I will never hear her laugh enough, stroke her head enough or smell her sweet Makily smell enough to ever be okay with loosing her.
I can never totally breathe a sigh of relief with her.
It's an uncertainty that I will carry with me forever.....
......and that is incredibly hard.
Please pray for Baby Reesie and her family as they live through some
of the most difficult times of their lives.
9 comments:
Reading your post brought tears to my eyes. I struggle with Kira's birthday with such mixed emotions each year!! It's hard to not be able to feel completel joy as your child's birthday rolls around.
Your beautiful girl is going to be FOUR!! She is beautiful in every way and such an inspiration to me and soooo many others!
Hug her! Squeeze her! Celebrate her!!
Hey...forgot to ask...can I put a link to your blog on mine???
HUGS!
Hey sweetie....I'm back in reality again! You available today?
Loving that your blogging more on this site. Your hysterical babe!
We NEED TO TALK!!
I'm calling you today!
seizures are heartbreaking. It was the hardest thing to watch Katy go through. But there is a God, and he has ALWAYS been faithful. I clung to that and It was my oxygen when I felt like I was drowning.
I often asked God why she had to have her DNA damaged. Then I learned that if the chromosomes would have been distributed differently, It would have not been Katy I would hold, but a different child. It was that specific composition that made up my daughter.
I believe in miracles, I believe in God. He is the same. Always.
hey it's tara again!
maybe it's a blessing in disguise that you can't "have a sigh of relief" around makily b/c it's so easy to take people for granted. at least whatever may happen in the future, Makily will NEVER be taken for granted! i love you and makily and can't wait to see you again for the big PAR-TAY!
I feel the exact same way, i just dont seem to have the words that you do to express my feelings. i still cant believe my emma has emanuel. shes skipped so many problems but that fear that something will go wrong or something is wrong and I just dont know it. I couldnt imagine my life without her. thanks for speaking for so many of us who cant find the words. happy birthday makily.. emma will be 1 on april 4..
Joy I didnt realize this but Makily's original due date WAS April 4, 2004. She came three days early. Our girls have so much in common.
I know just how you feel. Maia turns 13 March 21. A teen. A whole new set of feelings. Love you lots and lots, and then, lots more than that. :)
Wow. I so need to read your blog more often! For some dumb reason, blogs are banned at work, so it's been difficult for me to do much more than update my own. Thank you for your wonderful comments, and please accept my apologies for not being more of a faithful reader of yours. OBVIOUSLY, we have similar heartaches, and it's so good for my soul to know I'm not alone.
You know that I absolutely "get" this post. I deal with so much mommy-guilt as it is, that it's really comforting to know that that birthday sadness seems to be universal to us SN moms. I guess we'll always grieve the dream. And, like you said, perhaps we can't change that and we just need to learn how to deal with it. And, at least for me, remind myself that this grief is NO reflection of how much I love my daughter. In fact, we grieve BECAUSE we love our girls so much.
ALSO, because I am a slack-ass blog reader, I hadn't realized you were going to foster! Are you planning on foster-to-adopt? WOW! We have our first adoption seminar next month. Crazy! I will be praying!
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