Hissyfits Photography Blog

It seems odd to be writing about such a “serious” thing as Avery’s disease on Bethany’s blog…it’s such a “happy place” you know? But she loves me, and I think was a little bummed that she didn’t get a bigger response from her original post, so now you’re stuck with me! I think when you hear about a disease or a “tragedy,” as some people have called Avery’s diagnosis, if you’re like me, you know on some level that it could happen to you, but assume that these kinds of things happen to “other people.” At least that’s what I thought until my precious, perfect, “healthy” baby had a seizure in my arms two years ago.  She was only four months old.  The next forty eight hours were a blur of medical procedures, tests, and devastating news.  Life as we knew and understood it crumbled around us as we learned that our precious little one had multiple tumors in her brain, heart, kidneys, and skin.  We were told that she would probably never walk or talk and that her life would be one medical challenge after another.  

We are a family much like yours I’m assuming. If you enjoy reading Bethany’s blog, well, then we probably have a lot in common, because I enjoy it too, as Bethany is my best friend. Like you, I am a mom obsessed with my kids and all things surrounding them. I love crafting. I love blogging. I get impatient with my husband. I love shopping and am obsessed with Gymboree. I watch too much reality t.v. and I just happen to have a little girl who has brain tumors and seizures every day.

The difference between you and I, is that twice I have handed my baby over to brain surgeons and watched as they walked down a long hallway with her, wondering if I would ever see her alive again. The difference is that I have had conversations with Avery’s doctors about “end of life care” and what our wishes would be, should Avery not be able to maintain her heart rate and breathing without “extraordinary levels” of life support. The difference between us is that you read Bethany’s blog, but I have called her on my cell phone, from the hallway floor outside Avery’s hospital room while doctors worked desperately to save her life, and sobbed with my friend while we waited to hear if she would make it through another life threatening crisis.

No child should have to suffer the way Miss Avery has. No mom should have to think these thoughts. But some of us are forced to confront reality. We wake up every day to realize that we are living every mom’s worst nightmare. My baby is really, really sick and I can’t make it all better. I don’t know how long I will get to keep my Avery Elizabeth, and that makes every day a difficult balance of rejoicing in her life, and fearing her death.

When I read other mom’s blogs about the joys and trials of raising little ones, I can totally relate because I have a perfectly healthy six year old, Kaylen Rose. Yet, reading stories about “normal” stuff like potty training mishaps and milestones is bittersweet because at two and a half, Miss Avery is still pretty much an infant. She may always be and that’s o.k., as long as I get to keep her. But it doesn’t take away that longing in my heart for just a little glimpse of normalcy. I long to hear her say, “I love you mommy,” but I may never hear those precious words from my baby girl.

The last thing I want for you to feel when you read this is sorry for me, because of Avery I am a stronger person than I ever imagined possible. I don’t take a single second of her life for granted. I do hope you will  stop and take a moment to give thanks for all the blessings in your life. Really listen to your children’s laughter. Log off the computer and take an afternoon just to follow their lead. Realize that this day is truly a precious gift you’ve been given.

Sincerely,

Avery’s Mommy