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.  

Graduation...

It’s hard to be the Mom when you want to be the kid. To put on the brave face for your kiddo when you’re just as scared and worried.  I just want to get back in bed and pull the covers up over my head.  If I do that then today won’t come and go, and although it’s a good day and good changes, it’s going to be so emotional.  Hiding under the covers I can pretend like it’s all the same and everything is ok. 

Today I know I will be happy, sad, excited, scared, and more. 

Today is our last day at Sommer Elementary. It’s been home to me for 7 years and Camden for 4.  We will not say goodbye, just see you later, but it will still be full of emotions.  Time for us to go on “a driving adventure” (reference to Dora)

Today I get to lead 5^th grade in their recognition song, “I Was Here”, by Lady Antebellum.  Such a fitting song in so many ways and I’m entirely expecting to bawl my eyes out.  Grace should be singing that song. She should be celebrating the end of elementary school. She should be here with us and it just sucks!  And it being our last day at the school adds to it.  Yes, I chose to make the change, so I really don’t have any room to whine about it.   But it’s a big change for me and I’m sad and scared.  The words are just perfect for Grace and for what I hope I did and/or can do in the future.  The chorus is:

I wanna do something that matters, Say something different

Something that sets the whole world on its ear.

I wanna do something better, with the time I’ve been given

And I wanna try, to touch a few hearts in this life

Leave nothing less, than something that says “I was here”

I’m scared of change and of moving forward. Of the unknown. Of new things. Of no paycheck. Of failure.  Of losing good things and people.  But perhaps I’m more afraid of regretting not trying. More afraid of doing what I really should be doing. More afraid of being too much ‘teacher’ and not enough ‘mom’.  I of course can’t let any of this show though because Camden is scared and worried and nervous.  This is a lot of change for him too.  

I will be brave for him. I will have faith that whatever is to come is meant to be.  That Grace is with us and helping us along the way.  That even if I do fail that it will be ok.

11th birthday

Can't believe she'd be 11 tomorrow. Seems unreal. Seems like she was never even here. I know she was though. If nothing else, the heartache is too real to ignore. I sure do miss her. Really struggling this year. Not sure why.  Can't put my thoughts into words so just some ramblings...I love you Grace and miss you more than you'll ever know. 

My heart is so full…yet feels so empty

I have so much happiness…yet too much sadness

How does it love and break at the same time?

How do I get back that which I have lost?

I know I can’t.

I know you’re always here

I know you watch from above

I’m tired of being strong

Of walking around like nothing’s wrong

Can’t do it all the time

It isn’t fair. It isn’t right.

Yet I am too blessed to have a right to complain

So much to be thankful for

But it doesn’t replace you

Nothing ever could

There are no words, only heartache

Camden's first funeral

I have to share how impressed I have been today with Camden and his first funeral visitation. We've talked lots about death and Heaven, because that's where Grace is. So we decided to let him lead with what he was comfortable with at the viewing. He decided he wanted to see her. Afterwards he came and asked if I wanted to. I said no thanks. Does she look different? (Grace did). He said no. I reminded him it was just her body and her soul was in Heaven with Grace. He said he knew and that God gave her a new body. He did think it was odd she still had her glasses on. 

Afterwards we went to dinner and then headed to the hotel. As we were driving he asked me if it hurt to pull skin off. I though maybe be had a scab or something. I said little pieces of dead skin didn't hurt. I wasn't sure what he meant. So he changed the subject and we talked some about whether she would stay there tonight and tomorrow. I explained we would bury her tomorrow and of course then he wanted to know why we bury people. I told him i wasn't sure. I thought there were different reasons different people did it and I didn't know  for sure. and then he said he hoped it didn't hurt grandma. I was confused by now. I asked him if she had a sore on her. He said no. I was very confused. He asked if she still had her bones. Yes. Did she still have her blood? No. She must have a hole in her. What???? "I hope it didn't hurt when her soul left her body to go to Heaven". Oh! That's what all the tearing skin meant. I told him no.She didn't feel it.  What an amazing thought to have!! Then he asked if you need wings to get to Heaven. I told him I didn't think so. That I think Angels come and carry you to heaven and you get your wings when you get your new body. "That sounds cool!"

Such a smart, curious, sweet boy. Love him so much! 

Happy Heavenly Birthday Angel Grace

9 years ago today I officially started my most difficult, most rewarding, and most loved job ever. Motherhood.  Grace came into our lives after a week long stay at the hospital, 3 weeks early, at 7 pounds 11 ounces. She had the biggest cheeks anyone has ever seen!  She was perfect. All we had hoped and dreamed for.  I was broken into motherhood quickly as she was a colicky baby and Keven worked over nights. The next 2 years, 5 months and 2 weeks were the most wonderful, most difficult, most loved filled and most heartbreaking years ever. In between doctor appointments, therapies, medical trials, hospital stays and FSMA/MDA events she smiled, laughed, traveled the US and Graced the lives of everyone she met. 

From before we met her I knew I wanted to be a mom. And a mom several times over. 3 or 4 sounded perfect in my mind. Never dreamt making that dream come true would be such a long, bumpy, winding road. So after SMA we knew personally we had to try other routes. We were blessed through IVF with Camden. When we knew it was time again we decided adoption. We spent 2 years, and said YES to 10 different children. Time to try something different.  On to egg donor.  We had a successful transfer Fall 2012, only to miscarry at 6 weeks.  Winter 2013, failed transfer attempt number 2.

So here I am, 9 years to the day of starting this, my favorite job. Blessed to be mom to 2 of the most wonderful, beautiful children on Heaven and Earth. I am so thankful that Grace ushered me into this position. I am so happy to still be in this position, even though it's a bit empty without her here.  And although I never would have or could have imagined the last 9 years they way they were, and that motherhood would be such a wonderful and painful adventure, I wouldn't trade March 3, 2004 for ANYTHING! I love you Grace Dyan Coggin from now until forever. Happy 9th Birthday!                      

The more he grows...the more I miss her...

        I don't even know if that's possible. To miss her more. Hard to think it.  But it sure feels like it. As he gets older I miss her more and more.
         I miss that she didn't get to do all the things he's getting to do. I know she wouldn't have been able to do the exact same things, but her own versions of them.  She didn't get to go to school. Didn't get to play sports.  Go to Disney World. Go to Morgan's Wonderland. Pick out cool new furniture and wall hangings for her room.  She didn't get to meet all our new friends and her little cousins. I miss that I'm not learning how to do little girl's hair or buy her pretty Christmas dresses. Although if she were like me she probably wouldn't want to wear them anyways.
         I miss that when he's riding his bike she's not chasing him in her power chair. I miss that when he's playing baseball she's not cheering him on.  And that he doesn't get to cheer her on at what she chose to do.  At the park there is no sibling to run around and play with. There's nobody to tease and torment him like I did my little brother. No sister to have friends that he can have crushes on. She can't read him a bedtime story and help tuck him in. I know she wouldn't have wanted to do that every night, but I think they would have been close.  I wonder if he ever thinks of things like that. About the sister that isn't there...
        I miss that I teach students and am surrounded by those the same age as her and she should be in 3rd grade. First year of STAAR testing.  She was easy going, she probably wouldn't even care or worry about it. Which is the way I would want it. (Camden's a little more tightly wound, so it will probably be a different story). She should be coming to school with us. Enjoying class, friends, field trips and birthday parties.  We should be doing homework, science projects and performances.
        No, I don't really think I can miss her more than I already do. And I am thankful for the time with her. And thankful to have her dad and her brother. But sometimes that hole in my heart, that will never heal, feels so much bigger. Like it'll just swallow up my whole heart. That it hurts to breathe. And I miss her more...

Grace's Greetings

Thank you girl! I am getting your messages and hellos in the last week. Thank you for all of them! What are these signs?
In the last week I've gotten 2 calls and 1 email  from SMA people wanting to connect and more information. Don't think I've ever gotten 1 phone call. I know that's her reaching out to me.
Then several people asking how many kids I have and then wanting to more about Grace.
Someone noticing my Cure SMA purse and wanting to know all about that.
Got my butterfly scentsy warmer today, just in time for her birthday.
Then a show I've been putting off watching for almost a month, I decide to sit down and watch and the 1st song is Somewhere over the Rainbow, which we played at her funeral to send her balloons, and the couple is trying to adopt.
Man oh man...and that's just in the last 3 or 4 days.
I love you Grace! Keep the signs coming to me. I love getting them!!!