Another

 Another night, another tear

Another month, another year

All without you here...

Another give, another take

Another smile, another ache

All with a break...

Another up, another down

Another smile, another frown

All emotions drown....

Another hurt, another grin

Another loss, another win

All what could have been...

Another load, another cart

Another end, another start

All with broken heart. 

17

 17. Touring Colleges. Punishing broken curfews. Mending broken hearts. Prepping for SAT. Arguing about piercings. Laughing late into the night. Learning how old, lame and out of style I am.  That’s what I should be doing. That’s what I want to be doing. 

I debated about posting. Partly because I feel by posting it’s asking for attention and that’s not the point of the post. (Of course that is the whole point of FaceBook I suppose.) Partly because I’m not the wordsmith that Keven is and not in a “happy place” for her birthday this year. Partly because I don’t want people to know how much I hurt. All. The. Time.  But, obviously, I decided to post. For me. Not for anyone else. Just me. 

I can’t let today go by and not say something. Then it would be any other day and it’s not just any other day. It’s also cathartic to me to let it out. Most years I do try to focus on the happy and the positive today. It’s her birthday, it’s a happy and very special day. She was my first. She made me mom. She was Amazing! I love her and think about her every day.  But I don’t have it in me this year. Maybe it’s the global pandemic we’ve been in for almost a year now.  Maybe it’s Snowmageddon from a couple of weeks ago. Maybe I need to up my antidepressant. Maybe it’s because my memory sucks and I don’t remember everything about her like I want. Certainly not enough pictures or videos of her.  I don’t know. What I know is this year it sucks. I suspect next year will be even harder when she’d be 18 and graduating from High School. But back to this year. 

Grace was amazing. I always wanted to be a mom. Ever since I was little. The day she was born I didn’t think about the future and what 17 years later would look like. I thought about her. If I had thought about it, I never in a lifetime would have gotten it right. I wouldn’t trade it or her. I would never give up the short time we had together just to avoid all this pain. Never. I read something recently - “I always said that the one thing I could not survive was the loss of a child.  I was right.  The person I was is gone. I took her place.” -Kirsten Wood.  So true. I died too. I’m me now. I’m not the same I was before, during or after her.. For better and for worse. But I wouldn’t wipe her away if I could. I truly believe if she were alive we would not live where we do, have the jobs that we do or many of the friends that we do. Maybe not even the other 2 kids that we have. Crazy to think about that. 

Today Grace should be 17. When I reminded Lillian last night that today was her birthday her eyes lit up and she smiled ear to ear. “Yay! Sissy’s birthday! I’m going to tell my class it’s her birthday.”  She then asked if we were having a party and cake as usual. We celebrate her every year. I couldn’t tell her no, so we will grab some cupcakes and go to dinner, although we won’t be surrounded by all our friends and family like usual. This morning it was hard to leave the house. I just wanted to stay curled up in bed, but when we got to school, Lillian hopped out the van again cheering that it’s sissy’s birthday. After school she ran into my room screaming with joy and excitement because it’s Sissy’s birthday. She loves her so much without ever meeting her. They would have been trouble together. Fun, but trouble. I’m glad she can help me smile. 

Today Grace should be 17.  We should be celebrating. We should have a party. March 3rd is a wonderful day. March 3, 2001 - engaged to Keven. March 3, 2004 - Grace born. March 3, 2007 - Camden transferred.

I love you Grace Dyan. I carry you with me always. I hope you’re having a wonderful party in Heaven with Cheetohs, Ice Cream and Hershey Kisses. I hope you are surrounded by as much love up there as I am down here. Happy Birthday! 

August...every year

I don't write enough. I don't let it out enough. August always brings it out. Always on the surface in August.

Looking back at past posts though there's nothing new to say. It's still the same. The same love, the same pain, the same ache, the same wants, the same gratitude....always and forever.

I love Grace. I miss Grace. I want Grace back. I feel guilt about Grace. I feel sadness. I feel depression.  I feel love.

I hate SMA. I hate that it takes people away from loved ones. I hate that there is no cure. I hate that Grace didn't live long enough to see Spinraza.

I hate August. I hate the heat. I hate back to school - the stress of it and all the posts about new years. Grace would be a Freshman in high school this year! It's good for me to get back to a routine though. I hate Grace's Angel Day. I hate Grace's diagnosis day. I hate that this year we will actually be in school on her Angel day...this could be a good thing or a bad thing..only time will tell.

That's a lot of hate. Especially as much as I tell Lilli not to use that word.

I am thankful for Grace and my time with her and wouldn't trade her or it for anything.
I am thankful for the people in my life because of SMA. August 30, 2004 changed our lives forever and everything from that point on would be different with out that D-Day. Even if they aren't part of the SMA community I wouldn't be where I am today with the friends I have today if there had never been SMA. I am thankful that I am blessed with 2 beautiful healthy children (yes, I still want more, no they won't ever replace Grace or fill that hole).

So, as usual August, let's just get this over with. Let's just feel the feels and cry the cries and move on and be done.

August 17

What would you do if you knew that tomorrow was your last day with someone you love?  Would you stay up all night with them talking, laughing, hugging, crying?  Would you let them rest and just watch them sleep?  Would you stay awake all night in hopes that if you didn't go to sleep then tomorrow wouldn't come and they wouldn't be gone?  Would you beg and barter to try and make it not come true?  

What if you could change it? One decision made differently and the whole future changes. One change that alters everything else in your world - almost like the butterfly effect. It may make a difference if you knew what it would be like in 5-10-15 years...in the moment of course you would. In that instant anything would be worth it.

Wouldn't it be interesting if your life could be like A Christmas Carol and you could see how things will be and how they could be?

I hurt. A lot. And I miss my girl. A ton. I can't believe I haven't posted since last August 17th.  And that post, 1 year ago today, is still so very true. Amazing Grace how sweet the sound. I love you and miss you more than I can stand.  I could write non stop and never adequately put it into words.

My wish is for you to know how true that is - how much I truly love you, miss you and wish I could change that day 11 years ago.  I also wish for no mother to ever know the pain of losing a child. I wish to open my heart and home to a child that might not otherwise know the love of a mother, of a family.  I wish to continue loving your siblings and teaching them about you. About what love and Grace are truly about.

10 Years

I wanted to write something profound for today. It’s been 10 years without her in my arms. A decade. Ten percent of a century. Almost 25% of my life. Seems like that deserves something special and meaningful written. But I can’t find it in me. We all know Keven’s the writer anyways.

It still hurts. It still makes me mad. It’s still not fair. I miss her every day. Just because I can go longer in between breakdowns and crying fits doesn’t mean I miss her less. Just because I smile and laugh on the outside doesn’t mean my heart has healed on the inside. Just because I have two wonderful and beautiful children on earth doesn’t mean I don’t miss my one in Heaven. My first born. The one that gave me the only job I’ve ever wanted more than anything else.

It hurts. And I hate that memories are fading. Almost seems like it was a dream. That she wasn’t real. I hate that I don’t have more pictures of me with her. More pictures and videos of just her. I don’t care how annoying camera phones are and selfies, I am so thankful to have them so I can have so many pictures of my kids and me now.

It’s so bittersweet to see her friends growing up. And so sad that she missed out on all of it. She didn’t get to go to school. She would have loved it! She enjoyed people and was smart. She would have had fun.  She’d be going into the 7^th grade! That’s hard to believe, but true. Middle school clubs and dances. Slumber parties and first crush. Pre-teen attitude and frustration. What I wouldn’t give to be in the midst of pre-teen drama. Wonder what she would look like. What music she would like. What her fashion sense would be like (especially since I have none).

She didn’t get to meet her brother and sister or any of her cousins. They would have adored her. Camden would have taken excellent care of her. Lilli would give her a run for her money. I think they would have been a lot alike.  Goodness knows they both have that mischievous  grin.

As much as I miss her and am heartbroken, I’m also sad for her. That she didn’t get to do and see those things and more. That she didn’t get to experience life longer than she did.  

It’s not fair. I know, life isn’t fair. Trust me, I know. But it sure does stink. And today is not one of those days I can do the positive spin on it. I don’t care that “things happen for a reason”, or that “she’s in a better place” or that “God has a plan”.  Today is the day that just sucks because she isn’t here where she should be. Today is the day I dread every year. I still don’t understand why. She’s not more gone on this day.  And it doesn’t always hit me as hard as it is this year.  But this year it does…

Maybe it’s because I’m back to teaching and the room I’m in is just like the first room I taught in, before she was born. The room I left behind to stay home with her because I was going to be a stay at home mom. We didn’t have the diagnosis then, I was just living my dream.  Maybe it’s because Lilli has now passed her up in age. Lilli can now tell you her sister is up in Heaven. Maybe it’s because of personal changes taking place.  Maybe it’s because I hosted a bowl-a-thon on Saturday and a Kendra Scott event on Monday, both in memory of her, and I’m exhausted! I don’t know…

What I do know is a piece of my heart is gone forever. That I love her like no other. That she isn’t here and she should be. 

A New Angel

Easter is a time to rejoice.  Rejoice in the Lord for he is risen.  He died on the cross for our sins and went to Heaven to prepare it for us. We are forever thankful.

This Easter, however, my heart is broken, making it hard to rejoice. God gained a new Angel last night. Tambryn was 10 years old and one of a handful of children that have met all of my children.   She has a very special place in our hearts as she and her family was one of the first SMA families with which we connected.  She was tough, a fighter and a blessing to many.  I know she will be greatly missed, especially by her parents and her twin sister.  

I am glad that Jesus died for us so that we may join him in Heaven. And that he went to Heaven to prepare it for us. I do hope that Tambryn is with him, and her big brother and Grace, rejoicing in His love.  I do hope it is as wonderful as we imagine. I hope that she sends love and signs down to her friends and family. I hope that they all feel God's love, even in their pain. They are a strong and amazing family and I have always admired them.
So yes, Easter is a time to rejoice, but this year, for me, it is filled with much heartache.

August....again

Ah August...my nemesis...here we are once again.  For some reason we keep meeting about the same time every year. I always dread you, suffer through you, but make it to the other side.  I still go back to the Rodney Atkins song that became our song for quite some time "If You're Going Through Hell" I still turn it up loud and sing when it's on.

There is of course the obvious...it's HOT! I'm trying to be thankful for the mild and wet May and June we had, but now the 100 degree days have started and it's just hot!

But the real problem is SMA. So Many Angels from Spinal Muscular Atrophy. Including my very own.  Every year I play out the whole month over again.  Relive it all over and over again. Do I wish she was still here? YES! Do I still carry guilt? YES! Would I redo that day and change things if I could? YES!! Do I wish no other parent would ever know the pain of burying their child? ABSOLUTELY! Would I trade her or my time with her for anything in the world? HECK NO!

This year the  month is different than it's been in a long time. Usually one of my dreads is going back to work...now it's the opposite...the dread of not going back to work. I know, it was my decision. But it was a hard decision and a scary decision and hopefully not a wrong decision.  I'm sad not to be returning with my friends. I do better with a routine and schedule. I'm scared it's all a mistake. I'm scared I won't be enough for Lilli. I'm scared for Camden who is so much like me and hates change too going to a new school. I've been at school with Camden since he was 3...how do parents just drop them off?  It was so nice knowing everyone on campus, and everyone knowing Camden. I knew I didn't ever have to worry. I know he'll be fine, he's a smart, fun, good kid. I'll miss not seeing him throughout the day. But still...I'm scared.  I'm scared I will let my family down. I hate change. Don't do well with it at all..And yes, I know I'm not allowed to feel that way or complain since it was my choice, but too bad, I do.  And I'm scared of starting at a new school too! It's going to be hard to go from teacher to student. Hope my brain can do that again.

And it's the start of school. Grace would be starting 6th grade! Hard to believe. I wonder which electives she would have chosen. What she would have liked. What she would wear. What music she would listen to. Would she have a crush? So many wonders and what ifs.

So August...let's get this dance started so we can get it over with.  I will think of and remember Grace every day, although that's no different than every other day or month of the year. I will spread SMA awareness and continue to do so until a cure is found. I will host the bowl-a-thon where my favorite part of it is seeing all the families.  I will crank down my AC, except during the peak hours when we need to conserve so we don't end up with blackouts, and not use the oven. I will drop Camden off at his new school and go to my new school. I will struggle but I will grow.  I will get through this August as I have the past 9 years (really 9??!!! Almost a whole decade). Lots of memories, tears and margaritas.