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)

A Permanent Fix

In the middle stages of our May December romance the subject of marriage and children was discussed.  I, being May, wanted children and I didn't mince words about that fact. Yes, at times I may have wavered just a bit (especially when money was good and I could afford to do things I never thought I would be able to do) and I always feared that some health concerns might make it difficult to conceive, but deep down I wanted needed to be a Mom. Jacob, being December, wanted to give me what I wanted, but also wanted a compromise. I used to envision two or three children and our compromise was to only have one. Rae is the result of that compromise...she is our only child.

Before she was born, I started thinking about how much I was going to miss being pregnant (I had a very easy pregnancy...don't hate...). After she was born, I started worrying that she would be lonely and that over time I would be lonely as well without a larger family. But, that door was closed and unless Jacob decided to open it again then I wasn't about to suggest it (well maybe just a hint or two...three). Then the rug started getting tugged out from under our feet...

We started worrying about Rae's development and then the doctor appointments started. The longer we went without an answer the more nervous I became about it being something genetic (which it in all likelihood is) and then the question of having another child became more taboo. It was also about that time that people started asking if we were going to have a second baby (ouch!) and I just didn't know how to answer them. Finally, I started telling them, "No." I became afraid to entertain the idea. Then they'd ask, "Why?" After an awkward pause I'd confess, "I'm too afraid this would happen again and that the second time it could be worse." I was being completely honest with them, but the next comments were usually something along the lines of, "Well, you don't really know that "it" (whatever "it" is) would happen again." Really...I never thought of that! How silly of me.

I had a blissfully ignorant pregnancy. The idea that something completely undetectable/un-diagnosisable could happen never crossed my mind. I am confident that it would not be the same if I became pregnant again. I would have 40 weeks to stew over all the "what ifs" and drive everyone near me insane. I digress... We have actually discussed having a second child for various reasons, but some most of them feel selfish:

• Rae would have someone to play with and she wouldn't be alone (only thinking about her)
• Maybe "it" wouldn't happen again and we would have the opportunity to have some of those "normal" parenting experiences that we dreamed of for 40 weeks. (all about us)

We have to also consider the downsides:

• How would we be able to financially handle another child with or without special needs?
• What if "it" happened again? Are we physically able to care for two children with special needs?
• What if the second child resents Rae and ends up leaving her alone anyway?
• What if the second child resents the care and time we need to spend with Rae?

That list can go on and on...

This past Wednesday, we were asked to take something into consideration. Something so devastating that I still haven't wrapped my mind around it and all it implies. The final bit of rug left under our feet was completely removed. The doctor we saw believes that what Rae has is genetic (Duh...now tell me something I don't know) and we both have a recessive gene that combined to create one hell of a perfect storm (my words...his were way more eloquent). He went on to say that while contraceptives (condoms, birth control pills, etc...) were good (to a point) they were not 100% foolproof and we may want to consider a "permanent form of birth control." Basically, either one or both of us should have our plumbing snipped. We were just nicely asked told to not even try to have more children and to voluntarily sterilize ourselves!

Part of me feels like a challenge has been placed before me. Who is he to tell me that I should never have more children? What does he know? There are thousands of parents going through similar situations and have perfectly "normal" second children...maybe we would be one of those? Maybe we should just do it and I'll walk into his office with a bulging pregnant belly, look at him with defiance, and dare him to say a word!

Then the "what ifs" start again. What if he's right? What if I'm wrong? What if I had to sheepishly walk into his office with another child that needed his expertise? What if...

Some may ask where's my faith that God will provide or that He will take care of the situation before there is a situation to take care of. I get that, but my faith falters. He may be unwavering, but I am not. But, it isn't just my faith in God that falters. It is also my faith in myself. I fear that if something like "it" happened a second time that I may not be able to recover. Others have more faith in me than I do and I'm sure they'd tell me I'd do what I always do, pick myself up and take care of business. Maybe they're right and maybe their wrong, but do I risk it?

More Than I Can Handle

You might want to get comfortable for this post...it's a tad long. I have wanted to write on this topic for months, but just needed to really get my thoughts together before putting them out there for the world.

Are you comfortable? Got something to drink or nibble on (you might need it)? I'll give you a minute.

...(humming Jeopardy theme song)...

Ok...let's get on with the post...

I have my hands full (most of us do). At times I seriously doubt whether I can bear much more emotional weight on my shoulders. There always seems to be one more hurdle (quickly followed by another) or one more emotional upheaval (we've had three deaths in my immediate family this year). It is exhausting. It can be depressing. It usually just downright sucks!

But you know what sucks more...hearing, "God will never give you more than you can handle." It nearly drives me over the edge of sanity once spoken. I have to fight back my snarky retort aimed at the person who honestly believes they are offering some form of comfort (its NOT a comfort...please STOP saying it!). The theme of this phrase has even found its way into the song He Said by Group 1 Crew (I can kind of let this one slide though). This misnomer is not founded in any book in the Bible, but it is derived from a misinterpretation of an actual verse, 1 Corinthians 10:13. How in the world did 1 Corinthians 10:13 become the foundation for this offering of encouragement?!?

Let's look at the verse (New King James Version):

"No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it."(emphasis added)

This is the verse that has been used to support the misnomer of God not giving us more than we can handle. I believe there are two key words to this verse...temptation and escape.

• Temptation is defined by Merriam-Webster as:
• The act of tempting or the state of being tempted especially to evil
• Something tempting; a cause or occasion of enticement

Let's deal with this word first...

I believe people are confusing temptation with burden...they are not the same thing. The burdens and struggles I am carrying don't have anything to do with temptation (unless I'm tempted to run away from my daughter...uh...no). I am not being tempted to evil by hearing devastating test results, researching new therapies, burying a family member, or seeing Rae fall further behind developmentally (unless you count being tempted to break a few dishes in my back yard purely out of frustration to be evil). I am not dealing with temptation. I am dealing with very overwhelming emotional/spiritual battles with myself, with my faith, with my friends/family, with our doctors, labs or insurance company, and with my daughter (she is a stubborn little stinker at times).

Let's review the second word...

• Escape is defined by Merriam-Webster as:
• To get away
• To avoid threatening evil
• To get free of
• To get or stay out of the way of

This word deals primarily with leaving or avoiding a situation. It's pretty cut and dry. I can not "escape" my emotional battles (especially since some of them are internal) or avoid dealing with my daughter's medical quagmire. Escape is not an option. God delivering me of my burdens is not an escape plan. He's more like a support group leader. Offering me His strength during my weakness and helping me carry the load that I am unable to carry on my own.

So, why does this cliche bother me so deeply? Because I believe it is derived from a biblical verse that has been taken out of context and does not in any way offer real comfort. I also believe that if we never had to endure anything we could not handle then we would never need to turn to God in time of need, sorrow, struggle, or weakness. If I could "handle" any situation then I can rely solely on myself. I don't believe that is what God intended.

Paul, the same man who wrote 1 Corinthians 10:13, later wrote in 2 Corinthians 1: 8-10,

"For we do not want you to be ignorant, brethren, of our trouble which came to us in Asia: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves, but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us," (emphasis added)

Paul was at a low point in his life. He felt burdened beyond his own, earthly, ability to handle and felt his earthly life may soon be over. He recognized that there are times when the burden is more than we can handle on our own and we should trust that God will deliver us. Paul was given more than he could handle! That is a huge contrast from the verse being offered as encouragement that God will "never" give us more than we can handle. If Paul was given a burden he could not bear on his own, then why would we not be given a burden we too could not bear without God's help?

Lisa Copen, founder of Rest Ministries, writes:

"Let me tell you something that may come as a surprise. God does give us more than we can handle. Every day He may place us in the position where the pain is too much to bear. Why? Because we were never meant to do this life without Him! He gives you more than you can handle–but not how much you and He–together–can handle."

AMEN!

So, why do we continue to say this to people?

When someone is in the middle of dealing with illness, death, or just about any situation that causes doubt, pain, or depression...a common feeling is that the situation is too much for them to handle. It's swallowing them whole. It creates overwhelming doubt about their ability to overcome this life altering circumstance. Hearing, "God will never give them more than they can handle," may generate more doubt (or anger) or cause a serious fracture in their faith. They are already fighting a mental battle as Lisa shares,

"Over and over I have heard the saying, “God doesn’t give you more than you can handle.” But what about the pain. . . the grief. . . the depression. . . the darkness? It is more than we can handle. Much more. There are days that we wonder is life worth living if we have to get up every day and fight to be strong?"

Why are we adding more fuel to the fire? During the course of your life, you WILL have more than you feel you can handle. You are not designed to deal with everything on your own (even if you cling to family or friends and not faith). Here's my solution to those that wish to encourage and support those in pain... Stop saying, "God will never give you more than you can handle." It's not true. Instead, look for meaningful, scripturally based (if that's your thing) words of encouragement. Here are a few verses I have found comfort in:

"Cast your burden on the Lord and He will sustain you;

He will never allow the righteous to be moved."

Psalm 55:22

(God wants to help you carry your burden, but you must give it to Him.)

"You hear O Lord, the desire of the afflicted; you encourage them, and you listen to their cry"

Psalm 10:17

(He sees and hears you. Your pain, your fear, your sorrow. He sees and hears it all.)

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

Philippians 4:6-7

(When you feel your anxiety rising...stop, take a moment to collect yourself, and give that anxiety over to God. He will protect you. Accept the peace of mind He offers you.

I need to remember this one more often.)

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Joshua 1:9

(You are NEVER alone! He is ALWAYS with you!)

*I didn't come across these verses on my own. I had some help from a friend that invited me to join her in a Bible study called Brave Honest Questions Women Ask by Angela Thomas. I highly recommend this study for those struggling with a burden(s) or thorn(s). It's great with a group, but if you don't have a group please try it on your own.

The Back Story: All Systems Go!

When we last left off:

In the beginning of January 2010, I began the process of burying my dreams of motherhood and started thinking of a life of hollow freedom and insignificant travel (I love freedom and travel, but it's not what I wanted). I decided the best way to move past this point in my life was to expel my despair by creating art, specifically photography (I tend to go artsy when I need to work through something...that or I break things I don't care about...which ever works in the moment). I developed a concept and over coffee I discussed my intentions with a close friend. Tears ran down my cheek as I shared my pain and he asked only one thing of me...please wait. Don't do the photo project just yet. Give it a little more time. You don't want to do something you might regret. I did as he asked and I waited...

I did not sit idle while I waited though. I worked on putting our new home together (we just moved into it in November). I finished the last class I needed for my Bachelors degree (I had to take a 3 credit course to make up half a credit...ARGH!). I started thinking looking into Masters programs thinking I would start working towards that goal in the next year or so. I applied for a few jobs that might make use of my newly acquired degree (hahaha...yeah right...I have a degree in history with a minor in literature). Basically, I tried to keep myself busy while I waited...

I waited so long that my best friend couldn't stand it anymore. She was ready to force me to pee on a stick (not sure how that was gonna work).  I refused to do so for fear of yet another disappointment (and those tests can be pricy). Every morning, for nearly two weeks, she would call and ask me if I had peed on a stick yet. Finally, in the beginning weeks of February, I caved into her demands. I stood in my bathroom, nervously staring at my test results. I just didn't know what to think or how to feel. I became so used to seeing "Not Pregnant" on the tiny screen that seeing the single word "Pregnant" left me speechless. Now I had to tell my husband.

I've seen all those adorable ways women tell their husbands that they are expecting and I can't say that I was anywhere near as cute, adorable, or creative. As I mentioned before, we had just purchased our first home and were in the middle of painting (every single room) and I decided I didn't like the yellow in our guest room (I have since concluded I HATE yellow on walls). So, my way of telling my husband that we were pregnant was by using paint chips. I went to Home Depot and picked out "Baby Boy Blue" and "Baby Girl Pink" and taped them to the wall of our guest room. When he came home I told him I couldn't decided between two colors and he needed to go look and give me his opinion...He was a stunned as I was.

Then after a one doctors (I learned I was 7 weeks along) visit and a few weeks I was able to tell everyone.

I never did the photo shoot (I was blessed to do a bump shoot instead) I discussed with my friend. I have intentions of doing it one day, but I have expanded the concept and want to include other women and their stories of infertility (the highs and the lows). I'm glad I waited. I'm thankful for having a wise friend brave enough to ask me to wait...to not put something out there that I couldn't take back. Neither of us knew it at the time, but I was pregnant that day.

And that degree I laughed about has actually come in handy. In our Hypotonic World, I have to research (a skill I honed while writing papers) the medical maze of diagnoses & tests, insurance double speak & appeals, and government laws regarding Early Intervention & Disability.

Since that day in January, my life has been all about waiting. Waiting for Rae to arrive, waiting for appointments, waiting for test results, waiting for Rae to reach another inchstone, and waiting for a diagnoses. So, in hindsight, my waiting to conceive Rae was just preparing me for the periods of waiting yet to come. I'm comforted to know that I am not alone in my waiting. I have my family, my friends, and my faith. I used to feel like I was alone, waiting on God or doctors or tests, fretting over results or stressing over all the "what ifs". Now, I've come to know that God is waiting with me and I am never alone (a big thank you to my waiting family and friends).

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Joshua 1:9