Alexandria's Journey

Michigan has entered in a new law that allows a more… robust version of fireworks to be legally used in the state this year.  Not having to get them from another state is a nicety, but I learned today it’s not without consequences. 

Today is the 5 month anniversery of Alexandria’s death.  You’d think on a day like today I’d be more then happy to blow some things up, but I wasn’t really in the mood.  We’re planning our yearly neighborhood BBQ and fireworks show for this weekend, and since no out of state driving is required, Gabriel and I went to the local fireworks store to pickup some rockets.  They had a neat firetruck there, which I allowed him to climb all over.  He wanted to know about each type of firework, and it was a good time for both of us.  It got my mind off of things.  Until we checked out.

The cashier was a nice young woman and Gabriel, in regular fashion, flirted like no other.  She told him how cute he was, he agreed.  *roll of the fathers eyes*  She asked him if he was 4 years old, and he said yes.  She proceeded to tell him she had a sister who had just turned five…..  I knew exactly where this was going to go.  It was like standing on the edge of a lake, teetering on the edge, you know you’re going to go in, you know what’s coming, but it’s all in slow motion…….  Gabriel paused and said, “My sister is baby Alex and she died, I miss her a lot.”  The cashier said it was sad, I don’t know if she believed him, but he continued, “she was very sick and very little when she died.”  It was hard to hear his voice say that.  I didn’t lose it, which was a start for me.  But I didn’t make eye contact with the cashier from that point, I knew that would set me off.  I did my best to keep my composure, and affirmed his feelings, “Yes Gabriel, we miss her very much.”  And we left.

All afternoon Gabriel brought her up and I’d talk with him about her.  Eventually he said something about not seeing her anymore, and I said we can see her in the pictures and videos we have.  I asked if he wanted too, and he was overjoyed that he could share his “book” with me.  He and Kimberly have been working on a book of his favorite pictures of her, something we have been told in counseling will help him.  I think it is.

Gabriel sharing his book of pictures

Four months post Alexandria’s death and I am still trying to figure out where we go from here. Last April when we found out we were expecting it seemed like everything had just fallen into place. A perfect plan. We always figured some day we’d move to the suburbs; seven months prior we had. We wanted good schools for the kids; we had the perfect placement for Aden. We wanted four children; we were about to have four children. We always wanted a girl; we were about to have our one girl. I remember being in the van driving onto our street to OneRepublic’s “Good Life” and thinking it just can’t get any better than this.

Then it all came crashing down.

Now I’m left thinking – I thought there was a plan??

I thought I knew exactly what it was and where we were going. Now, one day I’ll think maybe the plan is we have our 3 boys and cherish the memory of our perfect little girl, who could never be replaced. The next I’ll think but what about the dream of having a little girl to raise here on earth? I am constantly fighting myself – happy one minute with what I have, the next wanting it back the way it was supposed to be.

In an effort to figure out why these trisomies keep happening in our family, we sought out the help of a fertility center. I wanted to know what their protocol was for someone who had multiple losses, because really, babies with trisomy are usually miscarried – not brought to term like ours. The first visit consisted of reviewing our history. The doctor said what we’ve heard before “You’ve had a lot of bad luck.” He said he hadn’t seen a case like ours in at least 10 years. The recommendation was to do some labwork to check for things like autoimmune issues and schedule a sonohystogram to see if any of the pregnancies/loss had caused scarring.

The sonohystogram showed nothing abnormal. The labwork, however, came back all clear with the exception of the MTHFR gene mutation testing. This testing is sort of controversial and there are a lot of differing opinions on what it means and what to do about it. It has to do with how the body processes folic acid. Some believe there is a link between MTHFR mutations and recurrent miscarriage. Having more than one mutation can put you at risk for having blood clotting issues. There may possibly be a link between Alzheimer’s and MTHFR. There may be a link between MTHFR and depression. A few sites mention research done to see whether Down Syndrome or Trisomy 18 are linked to the gene mutations – it sounds like some points to yes and some to no. I tested positive for a single mutation of C677T meaning I am heterozygous for MTHFR C677T. Reading about this on the internet, some say this makes little difference since it’s only one mutation. They estimate up to half the population is positive for any one of the MTHFR mutations. Well, half the population doesn’t have children with Down Syndrome or Trisomy 18 so..

Now what?

Driving to the sonohystogram, mentally screaming “why me? why us?” I was listening to WAY FM, a Christian station here… something I didn’t used to do prior to Alex but a change because of Alex… I wanted to be bold and ask for a sign that He hadn’t forgotten about me. That He has a plan for us. I don’t like to do that because I don’t think it’s good to “test” God. I just thought, if you’re listening, I could really use a meaningful song right about now. I only had about 4 minutes left in the trip so the next song was going to be all I’d hear before I parked the van. The song that had been playing ended and a song I hadn’t heard before came on – Anthem Lights – “Outta My Mind”.

“Feelin’ like I got a front row seat
to watch everybody be happy
Can’t even paint a smile on my face,
it’s so hard to not complain

Gotta try not to say
O God, what about me
‘Cause I know that’s not the way
that I’m supposed to be

Get me outta my mind and into Your heart
It’s not about me, it’s not about me
So I’m gonna start playin’ my part in Your design
Now is the time Get me outta my mind
Outta my mind

There’s a bigger picture on display
and it’s starting to come in focus
Causing me to see the ones in need
outside my little world
Gotta try, just to say
O God, what can I do
Doesn’t matter what it takes,
I wanna lead them all to You…”

HA! That obviously fit too perfectly. I think He was listening don’t you? 😀

Ok, so, as hard as it is, I know there is a bigger picture and I know I don’t have much if any control over it. I need to be ok with maybe we’ll have more kids; maybe we won’t. Maybe it’s in the plan; maybe it’s not. Whatever He has in store for me, for us, is a better plan than what I had in mind. I need to start playing my part. Because it’s not about me.