How To Find Sunshine During a Storm

I haven’t posted about Ava in quite a while, but she’s been on my mind quite a lot lately.  For the last two months, our family has been hiding a struggle that Ava has been having for several reasons: (1) Point blank…it sucks to scare people and (2) I’m not above admitting that I don’t like to talk about every scary thing in hopes that it goes away. This though doesn’t seem to be going away.

In early August, Ava developed an almost unnoticeable cough that has (very) slowly gotten worse. At school, her teacher, nurse and class helpers noticed she wasn’t able “catch a breath” at times, and her lungs were chronically filled with fluid. She was beginning to sleep a lot and when awake, either withered and coughed in pain or gagged herself into spitting up every bit of food she’d had tube fed to her.  The muscles in her throat area are so weak that they do not move, meaning she aspirates entirely, and in the event she somehow gets “junk” up, she immediately swallows it back into her lungs. We do have a nebulizer and a suction machine, but they can’t solve the problem totally.  With the nebulizer, she inhales an antibiotic to fight infections in the lung (that she can never seem to get rid of!) and also a steroid that helps expands her shrunken airway and lungs. The suction machine, if you’re not familiar, is a battery powered machine that…well...sucks gunk out of the upper airway or in more extreme cases (like Ava’s) directly from the lungs. We take a tiny plastic tube and stick in through her nose or mouth into the top part of her lungs and get out the gross stuff, the same way anyone else would cough it out or blow their nose.  I hate doing that to her. I hate that she can’t cough it up naturally although that instinct is still there. Can you imagine how frustrating that must be for her? I hate risking infection every time the tube is inserted.  It’s not always preferred by doctors, either.  Suctioning can be addictive, as much as we hate to do it, and the more we do it to make Ava comfortable short-term, the weaker we make her lungs. Lose-lose!

We made an appointment with Ava’s ENT and within minutes he was feeding me a dose of reality.  Ava was fortunate to have been a trach baby once and later had it removed (at the belief that her lungs were finally growing rapidly enough), but there would definitely be another trach in her future.  Along with the ever-present lung and upper respiratory structural problems, it didn’t help that Ava’s spine (and the emergency surgery it caused this summer when a rod exposed itself through the skin) has been giving her even more trouble with lung growth and function. I hurt so much for her.  It’s always amazed me though, how even in the delivery of the darkest news, just the presence of Ava makes everyone so comfortable. Yes, we were getting very bad news, and being told to prepare for new things, but Ava sat in her chair and stared at us so peacefully and at ease that we couldn’t help but smile back for her.  She’s amazing like that.  She can make me forget to be afraid even in the very moment.

When Ava and I got home from Jackson that night, Dylan asked me if Ava’s lungs were okay.  I told him no, and that we would work it out.  He reminded me that she is “kind of tough” so I shouldn’t worry. He’s right. I lost a lot of sleep that night thinking about how short and precious her life is.  I have to say, I honestly don’t dwell on the fact that Ava does not have a normal life expectancy.  Sometimes it catches me off guard to think about it and I have a good cry about it, then I straighten up and carry on with our business.  This time was a little different, though. Several times during the following week I caught myself saying things like “But this is what we expected” and “We are so fortunate to have even had this much time with her!” I can’t ever remember a time where I had to self-assure myself so much…never have I had to remind myself over and over that I could prepare for this, too, and like Dylan said, I shouldn’t worry, because even if God’s plan for her life is totally different from my plan, we can all rest easy knowing His is the best one.

I’ve spent some time in the last two weeks connecting with other parents of special needs children whose children have already left us.  I didn’t tell anyone I was doing it, because I didn’t want to be viewed as a pessimist, or even worry anyone anymore about Ava (my husband especially!).  I asked for advice on how to prepare for The Day, and I asked how they coped afterwards. I asked, because I especially need to know now, how to stay strong when things are really difficult, and how to remain functional for the rest of your children.  Their answers were, short, clear, and completely comforting.  I put together this little list of things that I learned from them and tucked my own copy on the bottom of my nightstand drawer.

How to prepare for the worst when the worst is the best you’ve got:

1)      Accept it. Their fate is your fate, and just like with anyone who has had a loved one leave them, God has already developed a plan for your life “after” and set the wheels in motion even if it takes some time for you to realize what that plan is.

2)      Hurt. Be okay with hurting. Expect to hurt for a while. Feel no shame when the hurt goes away.  Feel no discouragement when the hurt unexpectedly returns.  There is a cycle here, and that’s normal.

3)      Talk about it. No matter how unique the situation, there is always someone who understands it.

4)      Remember your angel. One day my angel will leave me – I know this. Remember the unconditional love you shared. Pray for the ones who are still here on earth.

5)      Start over. Sit down – write a new life list. Live it. Give thanks to Him for being given one of the most incredible responsibilities, ever.

Of course, I am still unexplainably sad about the life Ava is living, even though I know she is one of the most precious and meaningful things in this world.  She’s still my baby, and she’s still sick.  But….I’m okay with that. Like I said to all those people who wanted to talk to me about Ava’s newest “lung” news, we knew this was coming and we’re totally ready to take it on. 

I hope you aren’t sad after reading this post.  I hope you are able to see things the way I’m learning to, and to be comforted by that. Thank you for letting me share this part of our lives with you, and thank you for praying for our sweet little Avabug.  On Thursday, we meet with a new pulmonologist.  Please pray that he will have answers for us, and that no matter what he says, our little sunshine keeps smiling. =)