Tuesday, December 21, 2010


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.

Saturday, December 18, 2010

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!"

Monday, December 13, 2010


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.

Monday, December 6, 2010


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.