Tuesday, June 25, 2013

Making Cookies

I love to bake. That's kind of an understatement. I REALLY LOVE to bake! Most people know me for my banana bread (I'm up to about 8+ variations), but I enjoy baking just about anything. I always looked forward to teaching my children how to bake. The floor and counter being dusted with flour. Too much salt being added to the batter forcing us to make more then intended (the horror). The excitement on their faces while they impatiently wait for their treats to come out of the oven. Encouraging them to give something they made to others (who doesn't love edible gifts). Teaching them that as long as it tastes delicious then it doesn't matter if it doesn't look perfect and if it doesn't taste that yummy we just tweak the recipe and try again (I've transformed a few so-so layer cakes into great punch bowl cakes...and honestly, I still get a little antsy if it isn't just right...my inner perfectionist is a beast!). Watching as their confidence grows with each new recipe mastered. These are some of the memories I cherish and lessons I learned from my mother while standing by her side in our kitchen.

Rae is not able to bake (not without some assistance).

That broke my heart.

The downside: I'm still healing from that harsh reality.

The upside: I found a way to cope.

While surfing Pinterest, I came across recipes for Cookie Dough Bites and it was eggless. I LOVE cookie dough! In my 30+ years on earth I have eaten my fair share (probably more than) and I didn't (and still don't) care if it had eggs or not. I haven't gotten deathly ill from eating egg riddled cookie dough (or any other dough for that matter). But I thought this might work for another idea I had so I pinned it to my Sweet Tooth board and moved on to the next pin.

Months ticked by...

I started trying to figure out how to share my love of baking with Rae and I knew there were a few obstacles in our way.

  1. Rae doesn't use her arms well so we will have to help her mix the batter.
  2. Rae likes to put EVERYTHING into her mouth so it will have to be something safe for her to eat. (just because I eat eggy cookie dough doesn't mean she can)
The pin from months ago came to mind and it was the answer to my dilemma. Only 5 ingredients, I could pre-mix it just a bit, and no eggs! It was perfect. I told our OT that during her next session we were going to make cookie dough and she was thrilled (she loves making a mess).

It wasn't baking in the traditional sense of the word, but it works for us and has some great sensory benefits for Rae. I'm pretty sure this won't be the last time Rae and I make cookies together. In fact, I've already found a recipe for eggless peanut butter bites!

Wednesday, June 19, 2013

One Cure = Innumerable Miracles

Since we received an official diagnosis for Rae (and many months prior), I was often told by a family members and friends that God was in the business of miracles. I can remember hearing this same phrase being spoken from the pulpit when I was growing up. I also remember thinking that while God was in the miracle business, what makes any one person's struggle more miracle worthy than another's. This thought has never left me.

The last few months (since my own personal "D" day) I have been struggling. I struggle to cope with the enormity of the situation before us. I struggle to maintain my friendships. I struggle to understand all the medical gobbledygook that is spoken by the gaggle of doctors and therapists we see on an almost weekly basis. I struggle to carve out any time for myself and find my mind is often stuck on shuffle mode jumping from one thought to another. I struggle in my understanding of all things insurance related and often take my frustration at the greatly despised red tape out on unsuspecting customer service reps who utter the phrase, "I understand your frustration." (I seriously doubt it) I stuggle. We all struggle. It is part of life. (Yes, I say this to myself often)

One sunny afternoon, while Rae napped in her Mimi's bedroom, I wept at the kitchen table. Sobs racked my body. My voice became raspy. My eyes red and burning from the tears. My mother sat across from me...struggling. She has always offered me her ear, her shoulder, her wisdom, and a soft place to land. But this time was different...at least for me it was. There were no words that would soothe the sting. I confessed things to her. Thoughts that have been building up over the last couple of months fell all over themselves to be spoken aloud. That is when I confessed that I didn't want a miracle for Rae.

As soon as I spoke it, I felt guilty. In my mind I saw a miracle, wrapped up in pretty paper with a giant bow, a miracle that God had prepared just for Rae and I was shoving back to Him across the table firmly telling Him, "NO!" I was willing to turn down a miracle and sentence my daughter to a life of constant struggle. I felt horrible! In that moment I felt like I could possibly be the worst mother ever. But I just couldn't accept something (not that is was being offered...I am not delusional...God nor angel has offered me an instant cure for Rae) of that magnitude. Here's why...

I would want it for all the girls like Rae. We are all in the same boat (granted there are many variations, but we are all living with Rett). We all deserve the same miracle. I guess that is why so many families throw themselves into funding research for a cure. None of us want a miracle just for our own child. We want a miracle for all of our children.

For information regarding ongoing research
you can visit Rett Syndrome Research Trust.

*For clarification: If I woke tomorrow to discover that Rae was whole, no mutation, no deletions, no low muscle tone, no Rett, and called me Momma I would run around screaming at the top of my lungs about the miracle that happened during the night. I would never say no that gift.

Thursday, June 13, 2013

A Letter to Me

Your head has known for quite sometime that you have been on a journey that is very different from the one you expected. I pray that your heart starts to accept this new path as well. I pray that you are able to quell the anger that comes like a thief robbing you of your moments of joy and happiness. I pray that in those moments of deep, dark sorrow you are able to find the tiny pinpoint of light. Seek out that light.

I pray that you find the strength to write again, write with honesty, write without the facade of being a "superhero" who has it all together, and once again reassure others that they are not alone. You too are not alone. There are those that have gone on this journey before you and others that will follow after. Each of you will carve your own path and no one way is the absolute best way. You are all stumbling in the dark, clutching your flashlights, and trying to avoid the monsters that reside there with you. Find the others. Together you will make a strong beam of light that will penetrate the dark.

It is okay to not answer with "fine" when someone ask how you are doing. There are days when things aren't "fine." Acting stoic about your life does not make you strong, in reality, it weakens your support system...so be honest. It is okay to not agree with the doctors and therapist. It is okay to ask for a second opinion. It is okay to fight the insurance company for what you feel (and can justify) your child needs to move forward. Trust your instinct...it hasn't been wrong yet.

I want you to know that you are enough. It is okay to just be your daughter's mother sitting in a chair with her curled up in your lap doing ABSOLUTELY NOTHING therapeutic. It is okay to not be the always got it together, therapy guru, medical expert mother you think you are supposed to be. It is okay to loose it from time to time. It is okay to let your child watch TV while you go into another room and pull yourself together.

I am giving you permission to just rest. Take a moment or two, heck take an hour, and just do something you WANT to do not something you feel you have/need to do for yourself. If you don't take time for yourself you will become drained emotionally, physically, and spiritually. Even God rested!

Most importantly remember:

You ARE her voice!

You ARE her advocate!

You ARE her Mom!

You ARE your own separate person!