Thursday, September 26, 2013

The "Right" Words

After I wrote the previous post, "Getting It," I stumbled across the following poem on Pinterest. I don't know the title of this piece and I have no idea who J. Hendel is, but he/she totally nailed it! Often times people struggle to find the "right" words when friends/family are going through a tough time (for lack of better phrasing). Sometimes there are no "right" words and the best thing one can say and do is summed up by the last stanza. I'm not going to analyze this for you or explain why it touched my heart (you're smart people, I'm pretty sure you can figure it out).

*This poem was originally posted by Hollye Jacobs from The Silver Pen in a posting titled, "Caring for Children When a Parent Dies" (it took some digging to find the original post since direct links to it are blocked).

Getting "IT"

I have been struggling with writing this post. The more I thought about it the more I felt I needed HAD to write this post. When I began this blog it became an outlet for me to work out some pretty intense emotions (anger, fear, guilt, name a few) and share with others that find themselves in a similar situation to our own. I once told a friend that I didn't write for my friends, I wrote for myself and for those similar to me. That being said, by not writing about "getting it" I was refusing to allow myself to deal with it in the one way I have found to be helpful. Let the chips fall where they may...


We've all heard this phrase at least once in our lifetime, "Don't judge a man until you have walked a mile in his shoes." For me, it speaks to more than just judgement. It also speaks to how well someone may understand another persons circumstances, their day to day life, their ups, their downs, and everything in between. When I was younger, I didn't give this concept much thought because everyone is dealing with their own big bag of crazy (otherwise known as life) and we all stress, worry, grieve, etc... It's just different types of stress, but stress is still stress regardless of the cause. Right???


I was very, very wrong. I can admit that now because I find myself in the middle of a particularly challenging life at times. Stress is high. Rewards are few and far between. Looking back on my twenty something self I am appalled at how arrogant, offensive, and insensitive I was to at least one of my closest friends (I'm sure there were others...give me a break I was young and a bit stupid and/or self absorbed). I insisted that our stress, our worries, and our lives were the same (they so were not even close to similar) that I "got it."

I was single, in college, living with my parents, and my paycheck was for whatever I wanted. She was a single mom, living paycheck to paycheck, no assistance from her ex, and responsible for another persons well being. She is someone I have always admired for her strength, her sacrifices, and her love of life/family/friends (even if she can be a bit dramatic...pot calling kettle black). I hurt her. Worse yet...I emotionally invalidated her. My insistence that we were the same and that her life was no more stressful than mine invalidated her. I was wrong. So very very wrong.

I am sorry.

When we were together in her home I was given a brief glimpse into her life. I played honorary aunt for a few hours and we laughed or cried while drinking a couple of beers. Then I left. I waved goodbye. Her door closed. I slid into my truck (a black Chevy S-10 I miss that truck) and I went home. I drove off into the night without another thought to her life as a single mom and all the hurdles that came with the job (in all fairness that isn't entirely true I thought about her daily). I thought I understood her life because I was peeping in her window and surely I was empathetic enough to "get it." But I could turn it off. I could close the door and walk away. She could not.

There are many different ways a person can invalidate someone else's feelings. The "Minimizer" tells you it's no big deal and everything is fine (someone out there has it worse). The "Denier" will insist that nothing is wrong, it is all in your head and/or you don't really feel that way. The "Fixer" doesn't really listen to what is being said because they are too busy trying to figure out a way to "fix" it for you (sometimes it can't be "fixed" and all your want is someone to listen). It doesn't take much to make someone feel as though their feelings don't matter...heck I do it without even realizing it at times...we all do. But for the purpose of this post the invalidation I am struggling with is the "Relater"(BTW: I totally made that one up). The "relater" attempts to relate your life to someone else or their own which may over simplify the situation or the feelings you have regarding the situation.

So, what does that have to do with my life now? Well, sometimes well intentioned people believe they "get it" and try their best to relate to me/us. They adamant that they understand everything our life entails. I do not agree. It has become a huge chasm that needs to be bridged, but neither party involved will acquiesce. I have agreed that they probably "get" some aspects of our life, but that is not enough. It feels like it has to be all or nothing. They are hurt and offended because of my refusal to say they "get it" in its entirety. I feel emotionally invalidated.

In case a few of you may be shaking your heads, thinking I am being dramatic, let me explain why I feel invalidated. I need safe places to vent. To be emotionally distraught. To allow myself to sob uncontrollably. To rage at Rett Syndrome and all that it has stolen from my daughter, from us, and from everyone that loves her. I do not do this with everyone. I can't. It can get dark and ugly. At times I feel ashamed of my own feelings. I doubt myself as Rae's mom. I fear a future of loneliness (remember we're a May December romance). When someone offers to be a dumping ground for all my emotional trash it is with great hesitation that I take them up on their offer. They don't need to carry my baggage because I'm pretty confident they have their own. However, when pushed enough I can't prevent it from spewing out all over whoever I'm speaking with at the moment. That is what happened one afternoon (and at other times). Then the invalidation began...

Rae will be three in October. On her birthday, Early Intervention stops and she will be starting school soon. She has never spent more than three days and two nights from us (and that was with her Mimi and G-Boss). Her medical care becomes increasingly complex as she gets older. What started as therapy once a week turned into three therapy sessions, more specialists than I can count, one machine for respiratory therapy, multiple pieces of medical equipment, three medications twice a day, and feeding complications due to aspiration.

Entrusting Rae to complete (qualified) strangers makes me anxious. I finally start to express this and I hear, "You're just feeling like every mom that has to leave her child in daycare and return to work." Um...not really...thanks. I once confessed that for weeks after putting Rae to bed I mentally ask her to please wake up in the morning. "Every mother feels that way." Maybe...hmm...maybe not so much. I expressed the fear of having to confront the words "mentally retarded" on Rae's evaluations. "Well, there are different levels and it doesn't mean what you think." I know that, but I still don't want to see it in black and white on official documents. It still hurts. I don't think of her that way. I'm pretty sure if the shoe were on the other foot they might not be so comfortable with the term either. By the end of our exchange we were just talking circles and neither of us were willing to back down. I felt like the safe dumping ground I was promised was no longer safe (I'm sure she felt the same, but I didn't offer a safe place).

Some people need you to know they can "relate" to you and your life. That either their own home life is, in some way, similar or their experience is more than enough to make them believe they "get it." That isn't the worst thing in the world. Having someone that really "gets" your life is one of the most satisfying, supportive, rejuvinating relationships a parent with a special needs child can have (or a widow/widower, a single mom, an alcoholic, anyone get my point). But that life isn't one that just anyone can fully understand unless it has totally consumed almost every fiber of their being. The further away you are from ground zero the less likely it is that you'll fully "get it." Of course, this is my own opinion and others may have different feelings from my own.

Most days I feel rather drained (physically, mentally, emotionally, spiritually) from what I absolutely HAVE to handle and keeping myself glued together that I don't have the emotional strength to deal with much else. This is one reason relationships suffer when you're traveling down such a different path than others. I don't really know where to go from this point... Some would advocate walking away from the realtionship, but that isn't really my style and not an option. Others would just limit communication or interactions with the person, but again that is not really an option. I'd like to figure out a way to mend this bridge, but I am not sure how to find a resolution that will make all parties happy. I guess I'll just have to wait and see where those chips land.

Thursday, September 19, 2013

Thrown on the Wheel

My world is just one giant wheel spinning around and around. Here I sit, in the center of my world waiting, watching as things spin by me. Sometimes, I spin so fast that I can't even remember the days events. At other times, the wheel spins so slowly that it feels like it will never end. I know at some point I will leave my world for another where I will be transformed, but until that time I try my best to wait patiently because the potter is not finished with me yet.

Rae has been sick lately...for a couple of months actually. Nothing serious enough to drag her into the emergency room, but we have been in and out of the doctor's office weekly. Her temperature kept fluctuating up and down (a high of 101.7), she developed a really nasty cough (more choking than cough), her appetite dropped (she LOVES to eat), and her sleeping patterns shifted (6pm to 3am...not my idea of fun). After three x-rays, multiple blood draws for lab work, and two appointments with an infectious disease specialist we found out that everything is "normal" (honestly that is such a relief). Her body is not showing any signs of preparing for battle. We have ruled out most of the usual suspects and the last one to check is her swallowing issues (we think she is now aspirating food not just liquid). We have preemptively stopped feeding her most solids and increased the thickness of  her liquids from "nectar" to "honey."

To say I was at my whits end at times during the last two months is an understatement. I was bedraggled, exhausted, and perplexed because everything kept coming back "normal." Feeling completely helpless to do anything that could help her was frustrating. Another coughing/choking fit would take control of her little body and as I cradled Rae in my arms, trying my best to soothe her, I could hear my inner voice singing,
"Have Thine own way, Lord! Have Thine own way! Thou are the Potter, I am the clay. Mold me and make me after Thy will, while I am waiting yielded and still." 
These lyrics have become a source of comfort for me. I struggle with the "why's" of Rae's Rett Syndrome. Why us? Why her? Why Rett? Why? Why?? Why??? I also struggle with my own confidence in being her mother and being everything she needs me to be for her. Will I be strong enough? Will I be patient enough? Will I be assertive enough as her advocate? The questions are endless. This simple hymnal reminds me that I am as much a work in progress as Rae is and it takes time. Singing this to myself helps me not loose it when she's in the middle of a 20 minute tantrum, spitting her medicine out, refusing to drink a bottle, or coughing uncontrollably.
"Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand." ~ Isaiah 64:8 (NIV)
God is the potter. I am a ball of clay. My life began when I was thrown onto the wheel and painstakingly shaped and reshaped by His hands. I'd like to think I am no longer on the wheel, that I am waiting to be fired, but He is not done with me. At best, I am sitting on a shelf, drying, waiting for the final touches before being placed in the kiln. However, I believe I am still spinning. In the short time that Rae has been with us I have already felt myself changing. My patience, my compassion, and my faith (to name a few things) have grown. Rae has become an extension of the Potter...a tool one could say...reshaping how I interact with her and the world we in which we live. Am I perfect at being her mother....nope, not at all. Am I trying the best I can most times...absolutely.


Have Thine Own Way, Lord
Written by: Adelaide A. Pollard

  1. Have Thine own way, Lord! Have Thine own way!
    Thou art the Potter, I am the clay.
    Mold me and make me after Thy will,
    While I am waiting, yielded and still.
  2. Have Thine own way, Lord! Have Thine own way!
    Search me and try me, Master, today!
    Whiter than snow, Lord, wash me just now,
    As in Thy presence humbly I bow.
  3. Have Thine own way, Lord! Have Thine own way!
    Wounded and weary, help me, I pray!
    Power, all power, surely is Thine!
    Touch me and heal me, Savior divine.
  4. Have Thine own way, Lord! Have Thine own way!
    Hold o’er my being absolute sway!
    Fill with Thy Spirit till all shall see
    Christ only, always, living in me.

Monday, September 16, 2013

Mini Mozart

Things have been so crazy lately that I keep forgetting to share some of the awesome stuff that happens at our home. Time to play catch up...

Rae was giving a piano by her honorary grandma Robin. We were elated! She loves playing the piano. In fact we have two iPad apps, one toy piano that teaches colors/numbers, and one mini pink upright piano already. Being given a full size upright piano was the cherry on top of the sundae. Rae is able to sit in her wheelchair and push the ivory keys till her hearts content.

This is especially important for a couple of reasons:

1. She is completely engaged. When she is happy her touch is soft and gentle. When she is upset she bangs on them with all her might while sputtering baby curse words.

2. It motivates her to use her hands! This is critical for Rett girls because many lose purposeful use of their hands. As long as she will reach out to tickle those ivories then I'm going to encourage and enable her to do so.

3. Rae loves making music!

Saturday, September 14, 2013

Tears and Giggles

As I sat anxiously in the hospital wheelchair, Rae in front of me soundly sleeping safely buckled into her car seat, waiting for dad to drive up to the door I gained some interesting insight into our little girl. She does not concern herself with the wails and sobs of others. The peaceful quiet in the hospital foyer was immediately disrupted when the elevators doors opened and the screeching cries of another newborn heading home shattered the silence. I turned to see if Rae was disturbed by this intruder...she was not. In fact, she slept through his high pitched wailing and I swear she let out an exsacerbated sigh (similar to the ones her father often makes). I jokingly told my mother that my child had no empathy.

I did not give it much thought after the sliding doors shut behind us, effectively ending his serenade, but her can't be bothered by tears attitude morphed into one that finds the sounds of sorrow to be amusing. The first time she laughed at my tears it made me cry even harder, which of course made her laugh more. Over and over she would crack grins and giggles at the sound of someone's sorrow. It also unlocked a tool for us to whip out whenever she is crying...and it works! During the middle of a tantrum, complete with crocodile tears, I will pretend to cry...heaving my shoulders up and down while wailing. She laughs. Sometimes it is a cry/laugh combo, but she laughs and I'll take it because it is enough to distract her from whatever she was pitching a fit over.

What is funnier is when she laughs at cartoons and sitcoms. Sometimes it is very subtle and other times it is a full blown belly laugh. My kid has very little empathy for others and it cracks me up. I have started telling her that the person she is laughing at is hurt, upset, or might need help, but I still can't help laughing at her wicked sense of humor.

Rae listening to Meg on Family Guy cry.