Annabelle's Story: Living

"Cherish every moment."

We hear this all the time.  Since I had Makayla I have heard this advice from strangers weekly.  It's a really nice thought.  Of course, we hope to live in such a way that doesn't minimize the simple beauty of the day-to-day, particularly with your children.

Can I be real though?  I wanted to spend a lifetime with Annabelle, not celebrate her weeks and months because I knew there would not be many.

Oh we made the most of it - we threw a family party for her 1 month birthday and Ryan's 31st combined.  And we had a house full of friends for her 2 months.  It was wonderful and I am forever grateful that we made special moments and celebrated the time she was with us.  But part of me hated it.  It was one more reminder that we were losing her.

Annabelle 1 month, Ryan 31.  Great-Grandpa Jack (seated) passed away 2 days after Annabelle did.
This was the last time the family was together.

But what can you do? We settled into routines.  We went on family adventures.  We did our best to live our lives and to love what we had rather than focus on what we were losing.  But we grieved.

We did all the things that we would have done had Annabelle been healthy, and probably even more.  Erin came to visit as often as she could.  We took a billion pictures.

Annabelle didn't do well in the car.  She was the sweetest, calmest baby, but the car seat positioned her in such a way that pressure on her lungs and restriction of her airway made it hard for her to breathe.  Sometimes she was just fine, other times she was not.  It was hard.

A nurse came each week to check on Annabelle - her weight was steady, she seemed the same, so there was no more to be said.  When she was about 9 weeks old, we had a suction machine delivered to the house.  SMA causes respiratory issues and often babies have a difficult time clearing their mouths and throats of normal secretions.  Similar to what dental hygienists use, the machine could help us clear her mouth and throat if necessary.  We were comforted to have something there if we needed it...at first.  It didn't take long for the truth to set in.  The machine is small, hardly intimidating.  But it represented the huge, daunting reality that she was so weak, she could even choke on her own saliva.  We tried using it once.  We thanked God that she didn't need it again.

At home, we did all the things that families of 4 do...I would wrap Annabelle up in the Moby* and we would join Makayla in her many activities.  We colored, read, went for walks...and the girls bonded.  Sometimes I wanted to "protect" Makayla from bonding with her sister.  It might have made things easier in some ways.  But it would have been terribly short sighted and entirely unfair to each one of us.  Annabelle received all the love and attention a little sister could possibly ask for (and probably a lot more).  Makayla got to pour out her love on her sweet sister and forever has those memories...and we have the memories of seeing our girls together.  The social workers, the nurses, the people who are supposed to know - they all told us that Makayla wouldn't remember.  She would have a vague imprint of loss.   She would probably act out at some point in confusion over something missing.  But she wouldn't really remember details.  But she does.  There is no way I can describe to you the simultaneous beauty and heartbreak of watching Makayla take her dolls and act out times she spent with her sister.  She asks about her daily.  And she grieves with a maturity no one could have anticipated.  Our advisers were not misinformed.  They have years of experience to tell them how it should be.  But Makayla is different.

 


*The Moby - you may or may not have any experience with this mile-long piece of unimpressive fabric.  With Makayla, I disliked it - it was hot and awkward and required far too much effort.  I used it here and there because it served its purpose, but my overall impression was "eh."  With Annabelle it was a necessity.  Because Annabelle could not support her head at all, anything I carried her in needed to be entirely supportive of her neck - no structured carriers could accomplish this without significant modification.  In addition, her neck needed to be in a position that didn't block her airway, so even modifications were insufficient.  With the Moby, I could wrap her up in the exact position she liked best, cover just the back of her head to keep it secure, and thus she could go about the daily routines with Mom and Sister.  I can't say enough about how important it was.  In fact, after Annabelle passed, I tried to collect wraps to donate to other families with infants in hospice care - our nurse was glad to pass them on directly to families who needed them.  Unfortunately, the mom sale and trade sites on FB didn't seem to believe that I was really going to donate them, and took down my requests.  I got a couple from friends and cleared the wrap section at the local second-hand store.  It felt good to pass along a tool that I knew would benefit other families in similar situations.

For all the talk of wraps, however, Annabelle was really Daddy's girl.  No matter what her disposition, he could scoop her up and she would be perfectly content.  He carried her in what looked to be the most awkward position: draped over his forearm with his hand supporting her neck and covering her chin.  No matter how awkward it looked, she loved it, and only Daddy could really do it.  He was often a hero, careening around the house with both girls - one content, the other giggling wildly.

Don't let his expression take away from his amazing composure and confidence as hero to 2 princesses.

What more can I say about living while your child is dying?  We did our best.  That is all.