The view from my private beach....

Whew, we have had some busy days. Easter was wonderful! I was tentative, I was worried going into it. Last year, we baptised Marie on Easter. What an amazing day to do it, the church full of lily's, but I worried how I'd handle that this year. With God's grace, it was just fine! Church was nice, it's my favorite service of the year. I only teared up a few times, and once it was while we were singing The Lamb, and that always happens so it doesn't count:)

After church we went out to Marc and Gails for the annual Easter egg hunt. It was the best afternoon I have had in a long time. Marie was a trooper, she wasn't fussing at all and content in my arms. Josie had a blast, her and her cousin Nicole found tons of eggs and got some really fantastic Easter baskets. The meal was as always, really good. Luke played softball, and that game is always a lot of fun to watch. Josie actually batted and ran the bases a few times, she had a blast. Most importantly though, family kept me laughing and enjoying myself too much to get down. It was such a break from my day to day worries, I am grateful for that. It was such a beautiful day!

Other than that, we've been just doing the day to day. Marie is doing a lot better, she's slept through the night 5 days in a row now. Still in the middle though, truth be told, Luke and I like having her in bed with us too much to move her back to her crib. The weather has been so nice, yesterday Josie and I were outside for hours doing sidewalk chalk and blowing bubbles.

Here are some of our recent photos, Josie and I dyed eggs and they turned out awesome! It was a special dye kit for marbled eggs, and I think we'll do them this way from now on. Who knew that a few drops of vegetable oil in the dye could make them turn out so cool?


















Marie napping (on her own!!!) in the recliner. She is so beautiful, and her hair is getting so long!












My view from the sling... Marie in her favorite place:) She's still spending a few hours every afternoon in her pouch, she is my little Sling Thing.











Monday night Josie had her first soccer practice. She's the one in the pink coat and shorts. In this pick she's sitting down holding the ball. She had a blast and seemed to pick it up pretty quickly. I think she'll enjoy it. Also, since the weathers getting nicer and it's outside, her games are something that we can do as a family and bring Marie along. That, is priceless.










Josie kicking the ball during a drill. Just in case you wondered, her shin guards are pink, her soccer ball is pink. Her cleats are black, but they have pink stripes! I mean really, would you expect anything less? ;)

Birthday Ticker

So, I logged on this morning to update Marie's birthday ticker to the right. She needs the one that marches onwards towards the big TWO. I was on the site, I selected the design, then I proceed to the second step where you select the little figure. All of them show little children walking around. None are sitting even, definitely none lying down. All walking.... what the crap?

Am I the only mother of a "special needs" child who wants a ticker for the kids birthday? Why don't they have some for everyone? Sometimes, and trust me I try to be bigger than this, but it is like a knife in the side to see what Marie would be doing if she didn't have Leigh's. They should have a child that represents everyone. I am probably too sensitive I'm sure. I have issues just with the term "special needs". I see Marie as perfect, and dammit, I want everyone else to too.

I selected the tractor. This is relatively accurate since at some point I'm sure Marie will spend some time in one, and I made sure it was GREEN, not the RED tractor. I have a husband that would go ballistic if the tractor was red...

I was struck by this today. As my cousin would say "back when I was in the magic bubble" I would not have even noticed that they didn't have all sorts of children depicted as markers. I would have just picked the one that best matched and moved on. Never pausing. For that I am sorry. I am sorry I was so naive, I'm sorry that I was uncomfortable when confronted with disabled people before. I'm sorry that at the site of a sick child my first reaction was to look away. Thank you God for opening my eyes. There was this entire section of very special people I was missing. Because I'm being brutally honest I admit this, it also makes me sad that there are people who act the way I used to. They don't know what they're missing...

Tough Weeks...

The weeks since Marie turned one have been difficult. She is progressing to quickly, every week brings new things, never happy milestones. I struggle to find words when I speak out loud about all of this, how do you talk about it?

Days go by, and it's strange how normal continues to define itself. Luke mentioned that we are in this continuous mourning process. We are. First we mourned her when we discovered she was sick, then we mourned that she was loosing some skills, then we mourned that she seemed to be uncomfortable, we mourned her no longer being able to nourish herself, we mourned the loss of strength in her body, then we mourned the loss of her voice... we just loose things, bit by bit. What astounds me is this, regardless of how much we loose there is still so much left. I have discovered new things to rejoice in.

Marie does this thing, eyes wide she raises her eyebrows up, it looks like a surprised face. She gives it to Josie a lot. Marie loves to nurse, even now when she's not very good at it it is her favorite thing. I am her lovey, I love how that feels. She is still ticklish everywhere. Her forehead is ticklish, who has a ticklish forehead? Such tiny things, but they are so important. They are Marie. She is such a blessing.

My friend Sarah called yesterday, she is due to have a baby very soon. Together she and her husband have decided to do something wonderful. If they have a girl she will have the middle name Marie. I get choked up thinking about it. This is such a huge gift to Luke and Josie and I. What an amazing way to honor my girl... Of course, Sarah knows that now that I know this, if she has a boy I am never speaking to her again;)

My life has changed so much in the last year, I've been going over that a lot lately. I would not change it now though, even if I could. I have wonderful friends, wonderful family, and two beautiful girls, and Luke. I have a lot to be grateful for, I just need to be better at remembering all of it!

A Prayer in Spring by Robert Frost


Oh, give us pleasure in the flowers today;
And give us not to think so far away
As the uncertain harvest; keep us here
All simply in the springing of the year.

Oh, give us pleasure in the orcahrd white,
Like nothing else by day, like ghosts by night;
And make us happy in the happy bees,
The swarm dilating round the perfect trees.

And make us happy in the darting bird
That suddenly above the bees is heard,
The meteor that thrusts in with needle bill,
And off a blossom in mid air stands still.

For this is love and nothing else is love,
To which it is reserved for God above
To sanctify to what far ends he will,
But which it only needs that we fulfill.

Thank you all!!!

Marie's birthday party this Saturday was amazing! It was so wonderful to have so many people come and show how much they care about her. The cakes were beautiful, made by Aunt Lois so they were extra special. I have some good photos and I'll post them as soon as I get them uploaded. My brother Mickey videoed a lot of the party.

Marie enjoyed some vanilla ice cream, and most importantly, we raised a lot of money for Eli's Angels! What an amazing gift to give in Marie's name... THANK YOU ALL! We, as a family, are so very blessed!

My baby is 1 today!

I cannot believe how quickly the year went by... it seems only yesterday we brought our bundle home. I don't know if it's all the struggles we've faced, how amazing her spirit is, or how much I've learned, but I do know, we are so blessed to get to hold this BIRTHDAY GIRL!!!!

I believe...

I believe that God sends us things when we need them, be it people, sunny days, a friend with margaritas. I think he knows before I know what exactly I need. It was proven to me again today when I stumbled over the lyrics of an old song I used to love... the words knocked me down. This is me, all my thoughts and feelings, put so much more eloquently than I can...

I SPOKE AS A CHILD, Todd Snider

Everyone has days
Like I'm having
Holding onto to anything that I can
To keep myself
From anything but laughing
Looking back as far as I can stand

Out my window, winter is almost over.
I can almost see the sun behind the clouds
Looking back on where I was one year ago today,
laughing at the shape I'm in now.

When I was a child, I spoke as a child.
But all I heard was how I should get ahead.
Now growing up, it ain't anything but all this indecision
With these debts and doubts and worries
Hanging over my head.

When I was a child,I spoke as a child.
I wish I could remember what I said.

I'd like to find that old-time feeling
Somewhere in between what I've become
Somewhere down the line, it must have seemed appealing,
So I suppose that it must work for some.

But I wanna go back to going crazy,
believing every word that I was told.
You know, sometimes, growing up,
I think I'm getting wiser,
And then other times, I think I'm getting old.

When I was a child, I spoke as a child.
But all I heard was how I should get ahead.
Now growing up, it ain't anything but all this indecision
With these debts and doubts and worries
Hanging over my head.

When I was a child,I spoke as a child.
I wish I could remember what I said.
When I was a child,I spoke as a child.
God, I wish I could remember what I said.