30 Apr 2013

The Best Day Ever

6 Comments Adventures, CAH, Everyday

My Jake is back.

He is talking, up, alert, reading, smiling, and being Jake. The improvement is vast considering where we were 48 hours ago.

Thank you, thank you thank you for everyone’s prayers. Knowing that everyone has been thinking of our family has been overwhelming.

We are still watching Jake in the ICU.

The brain/ body is an amazing thing not to be taken for granted. Chance and I have learned more about the kids condition and what lies ahead of us for the kids and how we can better take care of them when they get sick.

We are blessed that Jake has come so far. All signs point to Jake making a full recovery. I don’t know if I’ll ever get back the years back I lost since Sunday morning.

So kids your kids, kiss your loved ones and be thankful for today.

Jake earned the game ball on Saturday. Life moves fast and furious. It can change in a matter of moments. Today I am thankful that Jake is back, Shelby is healthy, Mia is happy and Abby is recovering from surgery beautifully! One day at a time. That’s all I can ask for. I’ll worry about tomorrow later.

29 Apr 2013

I Would Sell My Soul.

No Comments Adventures, CAH

Have you ever made a deal, plea or promise to the greater powers for a wish to come true? You close your eyes tight, talk out loud and pray to see a sign that your wish will be granted. You wish with all your body and soul. Your heart hurts because you know that your wish HAS to be granted.

You wait. You pray. You promise ANYTHING if it would grant you your wish. I would sell my heart and soul if I knew that my children would be kept out of harms way.

And I did. Last night. I made promise after promise about what I would do if my wish was answered. There was no negotiating. I offered up everything I had, begged and pleaded.

My wish, our prayers have been answered. Jake is doing so much better. We are talking, laughing, crying and planning. Planning all the things I said we would do. Or that I would do… For him, for them.

As parents, our most prized possession is our children. We do anything it takes to keep our kids happy, healthy and here, where they belong.

29 Apr 2013

The Perfect Storm

1 Comment Adventures, CAH, Everyday

The perfect storm consists of everything in my most darkest nightmares to happen at one time. Today was that day. I knew that it was always a possibility but I didn’t think I would see it happen for a while.

Both Jske and Shelby are resting in ICU from an adrenal crisis. It was the stomach bug, low sodium, low sugar and other levels that were thrown onto a spiral that I could not control.

With 2 kids side by side in the ER at 5am, my world came to a stand still. This is what it feels like to have your heart torn from your body. We waited for both kids to be transferred to the ICU where we wait. We wait to see the damage caused by the perfect storm we couldn’t prevent.

CAH is the condition that we live with daily. It’s not something that is common. Nor something you would even be able to know the kids have. But when it is time, it comes out with a vengeance and makes sure we know it lives with us.

My disaster relief team is large and strong. They come in packs, doing everything to help us get through this tough time. I lean on them for support and for honestly do not know how I could make it through some days without them. I hope they know I would do the same for any of them on any given day.

But now we wait. We wait for Jake to show us signs that he is ok. Shelby is doing much better. Resting but here. I do not like to sit still, but when you are in the eye of the perfect storm, that is what you have to do. Sit still and wait for the storm to pass to see the rainbow.

23 Apr 2013

Now I Can Rest.

No Comments Adventures, CAH

I type by the light of the ipad.

In a room the size of a closet, shared by another family.

On a couch the size of a toddler bed, harder than a rock.

I try not to move or to make a sound.

I try not to wake The baby as she rests and partying that the baby next to her does not wake her.

I am thankful that we have made it to Tuesday. I didn’t think I could make it. I have waited for today for 12 months.

12 months ago, I knew that today would come. I was pregnant and knew the next steps. We had been through them before. The dexamethasone, the weight gain, the insomnia, the visit to New York, the surgery. I calculated the days, the months and tried to plan it out in my mind.

****

So here I sit, at 3:30 in the morning, typing away as I do what I do best. Earning another badge on my parenting uniform, that I wear so proudly each day. This is what I do because it is what we all do as parents for our children. We do the best that we can.

***

But now it’s over. The trip is almost finished, the recovery has started and now I can rest. I can rest knowing that her father and I have made every decision for her with the best of intentions. We have the best doctors looking after our daughter. I would have it no other way and neither would you.

But now I can rest. I will rest knowing that my daughter is healthy and will go home soon. It’s been a long road to get her but for now, it’s time to rest.

19 Dec 2012

Lucky Number 7

3 Comments Adventures, Holidays, Random, Tampa, Wordless Wednesday

I have never really thought of birthdays being special. They are for the kids, but for me, it’s work. The presents, the party, the friends…It’s another birthday that I have to make special for my kids. I love it (and them) but it’s a birthday and that means work for me.

But today, and from now on, I think birthdays are something so much more. They are magical…special and are so important.

Today we are celebrating my daughter’s birthday…her 7th birthday. Lucky number 7.

It’s a random year, not too big of a milestone, but a birthday none the less. And THAT, to any 6 year old turning 7, it means the world.

This year, the meaning of the age 7 has changed for me as well as many others.

My daughter will get to BE 7.

We will not only get to celebrate her 7th birthday but we will get to she her be 7 for another year. She will loose more teeth, she will ride her bike, play with dolls, get better at reading, spelling and math, she will excel in gymnastics, and run and play as free as any 7 year old would do.

She gets to BE 7 and I get to watch her be 7 every day.

***

I usually wake up in order to get a little silence in before the chaos starts. But the silence has not been broken yet this morning. It’s dark, it’s quiet. My house will soon be a buzz with the sounds of life. It can be overwhelming and I get frustrated. I tell (or yell) at them to BE QUIET! I want everyone to be quiet because the baby is sleeping. I want the peace and quiet. I want the crying baby to stop crying. I want my oldest two to stop arguing. I want my 3 year old to stop whining. They get louder. I get louder. But then the sweet sounds come too. They laugh. They giggle. They help each other out. Four kids make noise loud enough to resemble a 24 hour house party when given the chance.

But it’s the silence I crave and the silence I fear. I could not imagine the silence forever. I want to hear “row row row your boat” 4, 578 times…in a row. I want to hear them. I love their sweet little voices and couldn’t imagine not hearing them ever again.

***

So today the silence will break as it usually does. I will welcome it. I will welcome all that goes along with my 6 turning 7 year old, and the rest of the crew to celebrate this new day. Because today is a birthday! And day that she will run out of her room screaming “ITS MY BIRTHDAY!” ITS MY BIRTHDAY!” We will celebrate her 7th birthday like it’s 1999, and hug and kiss and smile like it is the best day in the whole world! Why? Because to any 6 year old turning 7, it is.

But for me, I will try to hold back the tears when my bouncing 7 year old enters the rooms and screams with pure joy. I will hug her and thank God that we are special enough to see this day. This is a celebration about a new year and what is to come. The 7th birthday has come for her and she will go on being 7 like she is supposed to. I will take her fresh age of 7 and cherish it as the greatest gift that anyone has given us. To all the parents of 6 year old little babies in Sandy Hook, that will not get to see theirs turing 7, I will think of them and what they will miss. It is not fair. In so many ways, it is just not fair. The memory of what happened will be with me each year I get to see my daughter turn another age.

I think the reason many of my friends and I have come to take this harder than some is because we see 6 and 7 year olds each day. Another Mom put it best when she wrote, we know what 6 is. Because we do.

***

Happy 7th birthday to the most amazing daughter…my first little girl, who’s taught me about all the joys that little girls bring to life. I am so excited to see what the next year brings.

17 Dec 2012

My New Normal

3 Comments Everyday, Monday Motto, Random

I haven’t cried.

Not yet.

Not until this morning…when I took my kids to school and learned I had a new normal too.

I did my usual Monday Morning routine of getting up, getting backpacks ready, getting lunches made, making coffee and making breakfast for my kids.

It’s our normal every school day routine. It’s what we know and what we expect.

We got in the car, we talked about how fun the day was going to be… who we were looking forward to seeing and what we were going to do after school. Just like normal.

I thought I was doing good. I had really tried to stay away from the news and pretend like we weren’t really affected by what had happened. I honestly had not cried. It was terrible and I knew that, but it wasn’t effecting my family directly.

However, today was not the normal Monday once we arrived on campus. The first thing my kids did point out the not-so-normal. The police officers standing next to our administration building. The police car.

“Why are they here?”

“What happened?”

That was when everything set in in my mind. This is the normal. This is our new normal. I told my kids that we had a new rule when they got out of the car.

“You have to give me a kiss as well as Shelby and Abby.”

We get rushed. They get rushed out the door. We know we will see each other later. Right? Of course! Like always…

I kissed my kids goodbye…for the day today.

I told them I loved them and I would see them after school… right? That’s what always happens. It’s our normal.

I still have one more left in the car.

I will walk her into school. We walked into school and we walked past the police officers. They said “hi” and they smiled. They gave me a look like they knew that I knew that she was too young to know what had happened. We were on the same page. Protection. They didn’t want to be here as much I didn’t want them to be there. Why did they have to be there? Nothing was going to happen, right? And if something were to happen, they would protect her, right?

Shelby said it best. “Mommy they will keep me safe.”

I could only hope that someone would.

So we walked my last pre-schooler into class. I have her a hug and a kiss and told her I would see her later…just like always…

I went back to the car with the baby and cried. I cried out loud and prayed that my babies would be safe today. I prayed for all the families who could not walk their little ones to school and prayed that all of us who did would see our little ones at 2:30 for pick up.

It wasn’t until this morning that I realized a lot of things are different.

***

Having a six-year-old makes me go one step further to only fathom The loss that the families of Sandy Hook Elementary School are feeling today. With their new normal setting in, I can’t imagine what their new normal feels like. I don’t want to.

Today is the first day of their new normal too. They are finding out how to deal with their new normal. And some how, life does move on. Time doesn’t stop. It continues to move on.

***

I’m planning a birthday party for my 6 year old this week. She will be six turning seven.

I will get to see my daughter turn seven.

As we celebrate my daughter’s seventh birthday with such excitement and joy, but my thoughts will be with all those parents who will not be celebrating seventh birthdays with their children.

I’m not sure if it will effect my daughter like December 14th has effected me, but I know that all of her firsts will not come for some families. What she will be able to do will not be able to be done by the children who went to heaven too soon. On her birthday each year, I will try to remember that we are still here for some reason. For some reason, it happened some place else and not at her school. We will celebrate being able to still be around on this Earth… for some reason.

***

I haven’t cried until now. My new normal will take a while for me to get used to. I cry today because I don’t like my new normal. I’m sure there are many others crying today too because they don’t like their new normal either.

***

15 Dec 2012

Funniest Christmas Card Ever

1 Comment Adventures, Everyday, Holidays, Tampa

I made this on Pic Minkey. Best photo editing software free on the web. Simple. Easy.

The card speaks the truth. Probally what we were all thinking!

21 Oct 2012

Just To See Her Smile…

No Comments Adventures

Just to see her smile…

Camping …The Bad, The Fun, The Menories

Today, I had to suck it up for memories.

Right now…

I am cold.

I am on a cot.

In the dark.

My nose hurts. Wait….It REALLY HURTS!

My toe is throbbing.

There is an airplane getting ready to land in my room (that would be the fan and why it is still on I’m not sure) .

I was stung by 2 wasps while trying to get a picture if our girls. I was bitten by fire ants while trying to make s’mores with our girls. These were the low parts of my day.

But now, after ice packs and benydral, I am looking back… and thinking I actually made memories for myself too…not just for Mia and her friends, but for my life as a Mom.

I got to hang out with some great new Moms that I usually only get to say ‘hi’ and ‘bye’ to at school. We now have lots of “next time” lists the next time we do something like this together.

I got to spend time with Mia. Just me and her. No one else. It’s actually so much harder to do now that she has 3 siblings…

I got to hear Mia laugh and experience her being a kid and enjoying what being a kid should be about: having fun.

I really didn’t want to come ( broken toe was not in the camping plan.)

And I kept trying to think of ways we could leave early… Trust me the wasp thing was my ticket home.

But… I sucked it up in the name of Memories. It’s not about me any more. It had t been for a long time. What I wouldn’t do to hear any one of my kids laugh.

If you can’t laugh at yourself, who can you laugh at! Glad I came. I will come back… Slightly more prepared. I’ve got 1 year (going on 2) as a Girl Scout leader under my belt…

I’m sure I’ll have more memories than I know what to do with later on. And I’m sure that I’ll be glad I stayed to make them happen… Just to see her smile!

27 Sep 2012

Routine Doctors Visits

No Comments Uncategorized

Here’s the low down on our doctors visits.

3 kids see their special doctor 3 times a year and have blood work done ever 3 months. (Oh! Did I mention that the blood work is $1000 in lab fees per child!)

Needless to say, it’s a long process, but finally at the ripe age if 3 they become comfortable with going. Trust me, the first 2 years are harder on me than them.

Lots of tears between us and them. Lots of questions as to why… (And trust me…I have questions of why myself.)

We see some of the best doctors in Tampa and I can finally speak nurse, insurance and billing. It’s been a long road to get Shelby here. I was a rookie with Jake and learned a lot. I’ll be a pro with Abby. You have to be.

“I am The Parent and I speak for my kids.”

19 Sep 2012

Life is now a Full House

No Comments Adventures, Tampa

And then there were 4. It’s been 7 weeks and I am finally able to bring myself around to keeping up my blog as well as juggling all I have in my life. My full house is wonderful. This is the first picture taken with all 4 kids. Just can’t stop smiling!