Accepting the Answer Given

Do you pray?

I do.

Sorta.

Not in the Sunday School way. On my knees. Hands clasped. Head bowed. You know like Jesus when he was in the garden asking God if there was another way to our redemption that didn't involve His death. For me, it typically happens during the peaceful silence of my drive home after taking Evie to school (I drive 25 minutes one way).

I also find my prayers to be an in the moment thought. A conversation. A quick word spoken in my mind. Sometimes my words are filled joy and praise. Sometimes they are spoken in times of great fear, angst, and sorrow. On a few occasions I spoke out in anger and even yelled. Yes, I have yelled at God. I'm pretty sure He expected it. He listened anyway.

A few weeks ago, when I managed to pull myself together, I attended church. I just sat there with my hands in my lap. Trapped in my own thoughts. Not focused on the sermon. I can't even tell you where my mind drifted off to during that half hour or the subject of the sermon. I was just not there.

The message came to a close. Our pastor opened the invitational (a time for those so moved to come forward and accept Christ, seek support/prayer from the congregation, or join the church) and a man came forward. He was an older gentleman. He was seeking prayer. He was diagnosed with cancer…again. 

Members of the church rose from their seats and moved towards the alter. Each one laying their hand on the person before them. This man was cloaked in praying hands and the Holy Spirit was moving. Our pastor spoke words of healing. Claiming it. Owning it. Asking for God's will to be done.

Then the Holy Spirit touched me (more like slapped me upside the back of my head). Tears started running down my cheeks.

We pray for healing. We pray for illness to leave our bodies and make us whole. We fervently pray for a cure to our ailments and our pain.

What if the answer to our prayer can only be given through death?

I don't know why that never struck me before, but that morning it hit me hard. I pray for my daughter and all her Rett sisters. I pray for a cure. I pray for healing. I pray for a restoration of their bodies. It is a broken record that plays in my mind all day long. But...

What if her restoration will only come when she passes?

Can I accept her death as the answer to my most earnest prayers?

For a few years now I have known that we may lose Evie at a young age. My newsfeed on Facebook reminds me of this possibility on a regular basis. In fact, our Rett community lost two more girls this past week. We read those words and our hearts ache. We pray even harder. As if that were possible.

The only option I have is to keep moving forward. Keep hoping. Keeping working towards finding a cure. Keep praying. 

God will give me an answer to my prayers in His time. It may not be the one I want to hear, but it will come. He will also give me the strength and support system to survive the loss if/when it happens. I don't know how, but I'm just going to claim it now (and pray some more).

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances;

for this is God’s will for you in Christ Jesus. ~1 Thessalonians 5:16-17 (NIV)

When There Are No Words

It seems weird to write a post about there being no words, but more often than not I find that there just aren't adequate words to express my sorrows and empathy to members of our Rett community. Nothing I can think of feels right.

One of the things I have grown accustomed to since joining the ranks of thousands of special needs families is loss. The loss of dreams and hopes for our children's future (and ours). The loss of friends and family. The loss of our own identities. And worst of all…the loss of our children.

I say ours because any loss within our community touches our hearts. Shakes us up. Reminds us how quickly the tides can change against our girls. We weep. We mourn. We console the best we can from long distances. We hold onto our children just a little tighter the day we read those six words, "Another Rett Angel gained her wings." It is a harsh reminder of how cruel Rett can be and why we desperately need a cure.

I am also at a loss for words. I don't know what to say. I feel compelled to acknowledge the loss, but what words do I use?

"I'm sorry."

"You're in my prayers."

"Thinking of you and your family."

"<hugs>" (virtual hugs)

These are the only words that remotely feel acceptable. I can't fathom saying anything like, "She's in a better place now." That would just piss me off if someone said that to me. I sit at my computer, staring at the screen, trying to come up with something to say and everything just feels empty. What I want to do is embrace them. Support them. Just be there in the silence. But we are miles apart and my only option is to write this post or comment on Facebook.

Sometimes there are just no words.

Upper EnDO or EnDON'T

We're at a crossroad again. I'm standing here (actually sitting) trying to make an educated decision about how to proceed. We've hit a few rough patches this summer including:

• a battle with pneumonia (a four letter word in our home)
• a hospital stay (likely more pneumonia)
• a sleep study (moderate obstructive apnea)
• some insane sleep disruptions (full blown night terrors with screaming and tears)
• the addition of a suction machine (like the one used by your dentist)
• another mystery illness/infection that has resulted in another round of antibiotics (don't judge, you're not in our shoes)

It's time to make some more decisions and I don't feel qualified to make them, but we're the only ones that can say yes to the proposed course of action that includes:

• an Upper Endoscopy (requires anesthesia which geeks me out a bit)
• a PH Probe/Impedance (requires a hospital stay with a tube down her throat)
• another (third) Modified Barium Swallow Study (it counts as 1 of her 35 therapy visits)
• a conversation about her tonsils and adenoids (remove or not remove)

I know it doesn't sound like a lot or even very drastic, but I see what they truly are…milestones. The end of the small, easy tests with simple answers. The tide is changing. The stakes are getting higher. I had finally found my sweet spot with our day to day routines. Now I am just standing here with no idea which way to turn or what it may mean for Evie and for us if we do (or don't) pursue some of these options.

Am I more afraid of the obstructive apnea or of a surgical procedure to remove her tonsils and adenoids? (which in all likelihood the doctor will not support, but I have to ask)

Am I comfortable authorizing MORE testing, uncomfortable testing that requires sedation and a hospital stay?

What changes will we have to make to her diet if she is now aspirating food particulates like we suspect?

It is a ever changing world that we live in. I find it unsettling most days. (or at least when I allow myself to think about it)

If you ever think you're tired of your monotonous, boring, somewhat predictable life, please take a moment to be thankful for it because the alternative can be downright nasty.