Friday, November 27, 2015

Holidays = Distrupted Routines

The holidays are here and we all know what that means.

Disrupted routines! AHHHHHH!!

Schools are on break, therapists go on vacation, and your daily routines are in jeopardy of being overthrown by the busyness of social gatherings, cookie baking, decorating, and shopping (of course). Typically, I work on most of those things while my daughter at school, but during the holidays and school breaks, that is no longer an option. Here are five things to help keep your routine intact (almost) and help you survive the holidays.

1. Make a list of the must do's in your routine.

I know what I can and can not get away with doing and not doing when it comes to our daily routine. I DO need give her medications to her on time. I DO need to feed her, give her fluids, and make her smile & laugh. I DO NOT necessarily have to get up at 4am to put her on her chest physical therapy (CPT) machine every morning. I DO NOT have to give her a bath on Tuesday if Wednesday will work better for us.  I DO/DO NOT need to keep every one of her appointments (it's case by case). Knowing what I can be flexible with helps me plan out our day.

2. Pinpoint where you have flexibility in your routine/day.

Structure is great. Some of us really thrive on it. Unfortunately, it drive me bonkers. I like being able to have flexibilty in my routines. By noting when I have the opportunities to be flexible, it makes it easier for me slip out for lunch with a friend or run an errand that just can't wait any longer. Yes, my daughter needs to have time in her stander/walker and she needs to continue practicing on her Tobii, but those are activities that I am able to shift as I need to (unlike her medicine).

3. Keep your expectations reasonable.

If you aren't used to having your daughter home all day, every day, then cut yourself a little slack. More often than not, you are one person trying to do the job of three or four. There is no way I can expect myself to accomplish all they do with my daughter at school in the comfort and craziness that is our home. She may use her stander one day and her walker the next and I don't need to beat myself up over it when I can't do it all. We can't always be SuperMom. Which brings me to my next point.

4. Take advantage of respite care.

Do you have respite care hours, a nurse, a trusted family member or friend willing to help? Then use them. I know that is easier said than done, but trust me, you will need some time to just take care of business (calling insurance/doctors or going to the store) or maybe just sipping a cup of coffee in the peace and quiet of your favorite shop. I can tell when I need a break and a little time to myself because I start feeling tired and grumpy. If I'm not getting that time to just unwind, it makes our routine that much harder to follow. This works best when you are honest about what you need and what you can and can not do.

5. Be honest with yourself, friends, and family about what you are able to commit to.

We've all done it before; over-committed ourselves by not being honest about our limitations. We all have limitations, and I'm laughing at myself right now because anyone can tell you I am quick to say yes when asked to help. Then, I start to realize I have bitten off more than I can chew, and back peddling just isn't my style. Now, I am making more of an effort to be honest with myself and others about what I am able to commit to and complete. It is okay to say "no" or "not right now" ; especially if the request would be difficult to work into your routine.

Bonus Tip:

6. Expect the unexpected.

The unexpected is going to happen and you'll have to make quick adjustments to your day. Most of us have already experienced those hair raising moments that completely destroy our plans. Most recently, we found ourselves in the emergency room  of the Children's Hospital of Atlanta, in Georgia (we live in Florida) because I accidentally pulled out my daughters g-tube button. I kept saying, "We were going to go to the aquarium today." and then a little cynical laugh would escape my lips. The unexpected happens: it doesn't care about your routine/schedule, and you just have to roll with it. Rest assured because you will always find a fellow Rett parent to help you through it.

Tuesday, April 7, 2015

Accepting the Answer Given

Do you pray?

I do.


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)

Tuesday, January 6, 2015

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.