Ready for a Change

We have spring fever around here. The snow is melting, the "biggest snowman ever" is now a scarf, twigs and a blob of snow in our front yard. The ground is too mushy for me to retrieve the scarf. I guess it will sit there for a little while longer.

Suddenly there are all kinds of questions and facts about Spring popping up in our house. "When it's Spring I can ride my bike." "EmilyAlexa, did you know in Spring the flowers come up. AND there are flowers in summer too."

Our art work is now moving focus from people and snow to flowers, green grass and caterpillars. Allan even told me that while I was working this weekend the bugs were in the garage sitting on their bikes. Seriously- that is pathetic.

I honestly don't recall our house ever being so primed for Spring. It doesn't even seem like this Winter has been too horrible. It the same weather patterns you would expect in Winter. We actually haven't had it nearly as bad as last year or as other parts of our country have this year.

I am even chomping at the bit for Spring to come.

For the last 13 months our souls have been in Winter. I think we are all ready to move to the next step. To be refreshed, renewed and encouraged. The last year, with all of the bright highlights, is overcast. I think we are ready to face into the wind and change from "hanging on" to "being alive". I sure hope so. It's tough work to feel bogged down all the time.

The bugs are blooming right now too. That is fun to watch as always.

I know it's February. I know it's still winter and more storms and grey days will come. Each season has tumultuous weather as do the seasons of our souls. To have a break in the monotony is just nice.

Duldrums

We've been trapped in the house, like most of the country. Today's blizzard of a 1/3 of America translated into "Maid of the Mist" like weather at our house. Just wet, no ice. We had plans to go to an indoor play place with a friend since piano was cancelled. We didn't go. I fell asleep on the couch and missed our window of opportunity.

It's weird. I have a cold. It's not bad. Just a cold. But for the last 24 hours I've been devoid of oomph. Yesterday I took 3 naps and today a long one. It's annoying. The misguided kids have cabin fever and are in each other's business left and right.

I am so grateful that Allan got home in time to take them to gymnastics so they could blow off some steam.

You would think that I would cherish a chance at being A-L-O-N-E in my home. I would be crazy not to be. I actually hate it. I get so blue being alone here. I start to think of all the stuff I have to push way down since you never know who will need a drink or when you have to referee computer time.

It seems that when I'm alone all the ugliness of my circumstances come bubbling to the forefront. The anger the jealously the irritation of living in the shadow of grief. I get so mad at myself when I get this way. I wish I could celebrate the joys of others- I do just not so heartfelt as I wish it could be. Instead I look back on our family photos. They are all tainted by the emotions of the time. "This is when I was happy and didn't know that my life would turn upside down". "Here's some babies that turned my life upside down in a great way, but boy do I miss my boy." "Really I have three kids, but there should be a taller one in the corner over there". "Look at how joyful those bugs are when they see their baby sister...."

Then I start to wonder why I can't "have" what I've always wanted and others "get" the vary thing. I wonder why do we get to pay the price? Why do we have to lug around a couple black holes of loss? It's something I just need to work through, I know. It's just that when I think I'm OK with something it's smack in my face again and again and again. When it's that blatant I know that God is trying to tell me something. I just don't know what it is yet. I want to know. It want these feelings to go away. I need to feel peace.

After Eric's death I felt like I was alone in the world. I was the only one with the albatross of grief tight around my neck. I so know that is not true. Now I see that it's more normal than we anticipate to loose a child. I hate that that is so. I really really do. I wish we lived in a world where we were unaffected by grief and the loss of a dream. Then if that were true, would we really be able to see the beauty in front of us the gifts God gives us.

I know God has big plans for us. I know that we will be blown away by His steadfast love and faithfulness for us. Those things I know, but for now I have to shake off the ugliness of my soul and resolve those things that bubble to the surface that right now make me sad.

Long Time No Hear

Hello blog! It's been a long long long time. So many times I had a thought and the intent to sit down at the computer and blog. Just not the motivation.

We made it through Eric and Ava's anniversaries and Christmas. Then I kind of crashed. Not in a bad way. I just sort of shut down and took a step back. The last year and a half has been high impact, busy and my mind got tired.

We've been keeping it simple around our house lately. There has been a refreshing break is our house. I call it the "post one year anniversary reprieve". It's been a great blessing. There is only so long that you can get battered by those waves of grief without coming up for air. The energy in the house has been easier. It's like we can all breathe a little better.

I so remember that refreshing feeling once we hit Eric's first Anniversary. I'm not saying that the grief goes away. It's just morphing into something different. The heavy black cloud that is ever looming is now up a little higher and maybe a little less dark. That is nice.

Each of the bugs have been growing, changing and maturing. It is just so fun to watch. My Dad's birthday was a couple weeks ago. The big bugs decided to throw him a surprise "Handy Manny" birthday party. (My Dad fixes everything in our house!) They spent many hours snuggling and watching Handy Manny with him while Ava was in the hospital. What once was something they did with Grandpa has become a special thing and important to all of them. Oh and when one of the Bugs says that you are a "Handy Manny" watch out- that's a high compliment in these parts.

So for his Surprise party- They told him the whole plan they concocted- it will be at his house, Uncle D will take him out to look at wood (my brother and my dad are pretty adept at wood crafting-cool skill they both have and we reap the benefits!). We will have everybody come, and Grandma makes the cake. We made a paper maiche Handy Manny Pinata, Made a Handy Manny table cloth complete with duct tape- had a Handy Manny Relay Races with Turner and Pat at the batons. We played a Handy Manny CD (Los Lobos people- it's hysterical). Grandpa cut his Handy Manny cake ("We break it- YOU fix it" instead their theme "you break it we fix it) with Alexa's Dusty. It was hysterical and she is still ticked about it. You know he didn't even ask and now Dusty smells like cake, blah blah blah- I'm 6 and these are the things I can't let go. So we, the good parents we are- threaten her that we will use Dusty to cut stuff all the time.

Let me tell you that was such fun to plan this party and focus on something else. The bugs thoughtfulness and attention to detail was so awesome.

In the middle of all of this, my Uncle had been fighting a very surprising and aggressive Leukemia. He was diagnosed just before Christmas and has spent the majority of his time in the ICU. But he is fighting and is currently making some white blood cells. My Aunt's life has been turned upside down as she lives in the ICU. Something which I empathize with. As the bugs caught wind of Uncle Don being so sick, we got to see a window into their big huge hearts.
They pray for him daily, if not more. They draw him pictures and they collected their change and gave me envelopes to mail to Aunt Peggy. They said that this is what people did when Ava was sick and it helped us.

I hate that Ava is gone. I will always hate it. But I can't help but to see the ways her life had a impact on my living Bugs. The sweet nature and giving hearts were always there. But all three of them have a wisdom and a compassion that is such a blessing to us. I fear that the death of their sister would ruin them. But I think that if we work hard and allow God to move through us, they will be just fine.

Whew!

Well folks, we made it. It's always such a relief to make it through the first year. I remember thinking while Ava was hospitalized, "I really just don't feel like 'doing this and feeling like that' again."

It sucks, but here we are One year and 3 days later. It's amazing to me how I felt like I could exhale after Eric's 1st anniversary. I feel the same after Ava's. It seems we all do.

So now we are in the home stretch for Christmas. Talk about gear switching. The big bugs were so motivated to have less school work this week they sped through their last 5 math lessons in their first work book. So now we do fun stuff for the week. I think we are all excited about it.

Today, while Emily was trying to finish her last lesson she was becoming fatigued. Suddenly there was no way she could possibly know what came after 37. I was trying to probe her memory, "thirty seven......" I led, hoping she'd get it. Suddenly I hear a little voice from one who is laying upside down in my lap "38". Em and I just looked at Lain, who continued to try and put her feet on my face. (Such a fun game, for me I tell you.)

Next, Emily can't be bothered to remember what comes after 44. So I said " forty-four...dead pan...forty.......????" Lain, still upside down, shoves 5 fingers in Emily's face. And suddenly she makes no sense pretending that she can't count to 3.

One of these days when that bug chooses to let us know all she's hiding, I think we will be amazed. Recently she decided to let us know that yes, she can write her name. (Of course we knew this because she was doing it even better than she is now in August). However since then she decided that she can't be bothered with it. This way she can get her sisters to wait on her. We are going to Dutch Wonderland over Christmas Break. We told Little Miss Bug that she couldn't go unless she could write her name. Oh look, there it was.

I get the "How do you move onto Christmas" after all we have just before it. My answer- see above, we focus on all we have, remember all we lost and rejoice in the grace God gives us to continue on, one day at a time.

One Year Ago

In all honesty, remembering the anniversaries of the deaths of your two children separated by 2 days is way harder than I thought it would be.

It's been 7 years since Eric was with us and today, it is one year since we had our sweet little Ava.

Sometimes, just getting through it is all you need to do.

On a brighter note, the bugs are doing really well with Ava's anniversary. I think that the harder day for them will be on Em and Lex's birthday. That truly is when they lost their sister. They only got to see Ava but a few times while she was hospitalized. That was mostly due to the H1N1 scare and the fact that they spent most of the time that she was in the hospital sick themselves.

I can remember the drive home after Ava died. I remember telling the bugs that their sister went to Heaven. I remember a couple visitors and making a Gingerbread House that broke. I don't remember what happened between putting the girls to bed and when I woke up the next morning.

I have spotty memories of the immediate time after Eric died. One that burns in my brain is of disbelief, emptiness and feeling like a failure. (How could I have a child that died?) After Ava's death, Allan and I had three amazing and wonderful bugs to go home to and to care for. For all my grumbling, they are the ones that keep me going. For that reason, I did not feel lonely and a hallow empty feeling after Ava died. I, of course, have a hole in my heart that is bigger than I can write about. There are feelings of disbelief- but not surrounded in embarrassment. It's more of a "Really? REALLY? This is not what I thought growing up would be like. SERIOUSLY? God are you SERIOUS? You want us to do WHAT?"

So we are incredibly sad. Always will be, I suppose. But in a few (seemingly LONG) hours, this anniversary bonanza will be over. We will have completed another year without our Fuzzy Monkey and the first without our Tiny Bug. Honestly, I'm proud of us. This really sucks, but we are still holding hands and walking where He needs us to go. Through my tears and my broken oh so broken heart I am saying, "Go Us!"

Anniversaries

This week we face two big anniversaries for our family. Wednesday the 16Th marks 7 years since Eric went to Heaven. Not as a tough pill to swallow as the time marches on. Always we will miss that sweet little guy and often wonder "what if" he we still had him with us. But as time progresses, so does our acceptance.

On Saturday December 18Th we will mark Ava's first anniversary in Heaven. This one is a little more poignant. The bugs all remember their sister and have to grieve this one too. I have to say though, I am looking forward to being able to exhale. Living through the first year of loss is just a big held breath. You don't know what grief lurks in the shadows. You sure don't know when the wind will be knocked out of your sails as you try to press through the storm.

Allan often says, and I agree with him, that their birthdays are a lot harder. Those dates would be significant if they were still living with us. The anniversaries of their deaths, would just be dates on the calendar. Days we would be pushing through so we could get to Christmas. Part of me, of course, would like to bury my head and skip the whole anniversary thing. But the other part knows that we have to face the reality of what happened on those days. So digging deep for strength, I find myself allowing myself to remember those final days. Why bury it? It is the story of our family. It is what happened. Gut wrenching and hard, but it is what it is.

What it is, has component of beauty and grace. These two dates mark the end of suffering and pain for my brave babes. They were ushered into the glory of the Lord and completely healed. I often here about how someone "lost the battle" with whatever disease plagues them. For those who love the Lord, it's not about loosing. It's about completing the journey. I don't see death as a punishment, but as the next step in God's plan for us. I am sure glad that I am able to think this way. Otherwise I'm pretty sure that my life would wholly be unbearable. As opposed to those days where I feel can't go on any more. When I feel closed off from society and God's embrace. Those days when you feel so different that know one can possibly understand you or where you come from. Those days where I have no energy to walk another step further.

During those times I just can't press on. So I crumble. I cry and I lash out. You know what happens next? A phone call. A letter. A Facebook message. A voice from God Himself or His voice through those who are feeling His tug. His nudge to pray and reach out. I am not alone, and I am not out of His embrace. I then can get up, and keep pressing forward in the knowledge that our family is on this path as a result of His Divine Plan. So we can have Joy. We can Have Hope. And we will breathe again.

To Honor Eric and Ava this week, the Joy-Hope Foundation is striving to raise $500 for each month that we were blessed to have them in our care. If you would like to contribute please check out our website www.joyhopefoundation.com to donate.

Pioneers?

Last week we took another step in this blind walk we are taking. There is new, high powered genetic technology that can map out the entire human genome. There is a research project that can compare data extrapolated from the DNA tested. The intent? To decipher the data and point to a gene that is, as we say in our house, "broken". The goal: discover what happened to Eric and Ava. The result: the discovery of a new gene that effects and causes Mitochondrial disease.

To play we need DNA and lots of it. Eric's DNA and Ava's were extracted from their muscle samples. Allan and I needed to donate lots of blood to the cause. With our hearts in our throats, we agreed to the research project and scheduled a time to donate samples. We got a sitter and planned to trek our way to CHOP at an ungodly hour so Allan can get to work. We mentally prepared for the trek, remembering that the last time we did this our sweet baby bug was snuggled and bundled in the car seat behind us.

Then I got the email. They needed samples from at least one unaffected sibling as a control. Well we have 3 unaffected, as they say. Yet were are the ones who are still on earth, so technically aren't we the most affected?

We call a family meeting and explain what is going on to the best of our capabilities. We let them know that while we would never force anyone to donate blood, we have to have one bug willing to do so. We also offered up a sweet deal for those who participate ( a toy and a family trip to Pump It Up). Hey, we aren't above bribery if you are going to do something big.

We made certain that they understood that what we are doing is to help in the future. We also made sure they knew that it is voluntary. After an afternoon of talking about it, playing phlebotomy and asking questions, the bugs went to bed. The next morning, lots more questions and sister playtime. Next thing I know I have my three bugs in front of me. There was a sister meeting and a unanimous decision to "do the blood thing for Ava".

We were so proud that they even decided to come with us. Honestly, it made the whole experience tolerable. Instead of an childless van, last week Allan and I drove a van brimming with sleepy bugs to CHOP.

All in all we only had one bug complete the deal. But we had another come close and a third willing to try, but we ran out of time. We are so proud of them. Their willingness to help and the fact that we went all together means more to us than we could ever express.

No doubt about it, that was a psychologically tough day for all of us. I really felt as if I was walking down hallowed halls. There was the scale Ava was weighed on. I recalled the relief I felt when I thought she was gaining and then realized that it was how it was calibrated. There I sat in the chair Ava and I sat in to have her blood drawn. There was the memory of how hopeful we felt after Ava's initial appointment. We were told she definitely had hearing loss and that she was definitely appropriate for a child of her age and gestation. Oh the hope we felt. It carried us through all we had next to endure.

We left that day as we did the time before. Hopeful for answers and fearful of what they may be and the implications they may hold for our family, the medical field, and the reality of what happened to our sweet baby boy and precious baby girl.