Wednesday, January 8, 2014

A Different Kind of Grief

I have debated back and forth about posting this. I really don't want to start a pity party, or make it seem like I'm ungrateful...but I also know that , for my sanity, I need some sort of cathartic outlet...and since getting up on the stage to do something like sing Mimi (La Boheme) and "die" isn't and option right now for working out my feelings, writing is the next outlet...I just need to make sense of what I'm feeling so I can move forward and find some clarity. (Yes...we artsy fartsy types need to work out our feelings...I think everyone does...just not everyone likes to admit it, darlings.)

I just need to work out this feeling. I don't know if I would call it "grief"... I am struggling with a sort of loss, but the reality is, I am feeling the loss of something I've never really had.

I love my children desperately. They make my life so much better and so much more interesting than it ever was when I was auditioning, doing competitions, and travelling around doing what I love to do and following my passion...but with Faith, there come those moments, those reminders that my life with my child isn't the same as the life of another woman with an average 2 year old.

My daughter has severe developmental delays...most likely is Autistic (we will move forward with her official diagnosis once we get through Audiology)...and I am dealing with that reality.

I know this diagnosis doesn't change anything. Faith is lovely. Faith is sweet. Faith is full of life and energy. Faith is smart...

but then there are THOSE moments...the moments when we meet with one of her peers...or even when we meet with a peer who is younger and I see all the things that I'm missing out on... she doesn't ask me questions...she doesn't follow directions... she doesn't respond to her name... I'm lucky if I can get her to look at me once or twice during the day... in THOSE moments, where her delays become painfully obvious I have to catch my breath. I go home, find a quiet place, and I cry. I weep for all the things that I wish we could do...messy art projects, letting her help me with the laundry...little things that an average two year old will happily do just to be close to their mommy.

I hear my friends complain about their two year olds, the terrible twos, the talking back and I want to scream. I want to scream because I would give ANYTHING to hear Faith verbalize her discontent...I would give anything to hear her shout "No!" emphatically, cross her arms, and stomp out of the room...of course, I don't scream. I don't mention it. I relent with the friend complaining and move on...but the sting is still there.

I had a friend give me a story/poem about how living with a child with Autism is like getting a ticket to go on a free vacation. You thought you were going to Italy, but somehow the plane ended up in Denmark...the gist was learning to love and appreciate Denmark and allowing yourself to let go of the possibilities of Italy... I guess I'm still working on the letting go part...

I LOVE Faith with every fiber of my being. I hurt when she hurts. It kills me that she can't tell me what is bothering her, that I can't make things magically better. Every day, I walk on eggshells, praying that we get through without a meltdown...I say a quiet prayer at naptime that she won't scream as she is waking up...because no matter what I do, nothing makes it better. She is waking up to a world that overstimulates her, a world she doesn't understand..and that scares her...and I can't help her to not be afraid...and it kills me.

We went to the doctor's office yesterday for Jeff. He had an allergic reaction to something and, no matter what we did at home, it just wouldn't go away...Phillie happily sat quietly next to me in the waiting room, and Faith ran around like a mad person. There were eye rolls as we attempted to keep her behavior in check, and even more when she melted down when Jeff stopped her from running back into the exam rooms for the 15th time... In those moments I want to scream at everyone rolling their eyes... if they only knew...and I want to cry because the grief starts to overcome me as I realize the marked difference between Faith and her little sister. Phillie follows simple commands, she stops doing what she's doing when she's told "no", she looks at me, smiles at me, kisses me, talks to me...

I guess the biggest thing I need in moving forward is to know that I'm the mom Faith needs...and sometimes I just don't feel like I am. She can't tell me what she wants, needs, feels, thinks... all she can do is melt down and throw a tantrum because I don't magically read her mind.

She brings me a sippy, I try to get her to tell me if she wants milk or juice (two signs that she mostly knows and recognizes) and it starts... the kicking, pinching, biting, hitting because she doesn't understand why I'm trying to get her to specify...she brought me a sippy, I should just know!

However...in spite of the daily melt downs, there are moments. Moments of beauty, moments of wonder where I am so, so grateful that she is mine. Moments when she gets up and starts dancing to music that she likes with a bigger grin than I've ever seen...moments when, without any indication of her intention, I feel her next to me on the couch with her little head on my shoulder... moments when she says so much without being able to say a single word.  Those moments I'm grateful for...those moments get me through the day.


Being a mom is hard work. Being a mom of kids with delays is even harder work... but no matter what your situation, its very rewarding.

One of my friends posted on Facebook about how guilty she feels at the end of the day when she realizes how much she has yelled at her kids.  As I was delving out my "you're not alone advice" a phrase popped into my head...a phrase that has gotten me through a very rough morning, and I'd wager it will get me through a few more (you know, one of those moments where you need to look in the mirror and follow your own advice.)  God didn't give us our children because we're perfect. He gave us our children so we could be perfected.

In the end, I will continue to have my moments of grief...its just how it is. I need to slowly let go of all the preconceived notions I had about what life would be like with a 29 month old...I know I need to stop looking at kids her age and slightly younger than her and comparing. That mother's journey to perfection is different than mine... and while my journey isn't the journey I'd pictured, its the journey I need.

I have faith that eventually I will understand why I ended up in Denmark instead of Italy, and I will fall at the knees of my God in expressions of gratitude for the journey. On the hard days, I will pine a little bit (I think, honestly, its in human nature to look at the greener grass on the other side of the fence and wish every once in a while that things are different)

My journey is MINE.  Faith is my daughter for eternity. She is strong, valiant, and brave...she was so strong, valiant and brave that Heavenly Father gave her a special mission...a mission to save me from myself.  A mission to make me better, to perfect me in ways that I never knew were possible. Aren't I so lucky to have a Heavenly Father who knows what I need more than I do? Aren't I so blessed to be the advocate for this sweet spirit and help her to navigate and understand this mortal journey?

I know I am. No matter how many times I get caught up in this "different kind of grief", at the end of it, standing in front of me is this beautiful, sweet little spirit, with toehead blonde hair and blue eyes. My God, she is gorgeous! She loves to dance. She loves to giggle. She loves to spin and spin and spin.  She is perfect because she is the way God made her to be. She may not be able to tell me she loves me, but she shows me in more ways that I can describe. She may not always be an angel, but she tries...she tries so desperately to be good...she just can't help herself at times... and that is what we're working on. No one ever made progress that never tried.

Italy would have been nice, but in the end, Denmark is going to be the greatest journey I've ever known.


Hugs and loves until next time, darlings.

2 comments:

Jeremy said...

Oh Brit. I love you! I am also all too accustomed to and intimately acquainted with loss and grief. Even from grief born of changed or different hopes and dreams than actual reality; developmental delays, behavioral and emotional disorders, miscarriage, non-biological children, and more. You are wise in realizing the need to grieve. You are also very wise in recognizing that Faith was given to you by Heavenly Father because He knew YOU could love her. Something else I've also learned through my journey is that we knew our trials and struggles (personal and familial) before we came to Earth. They are unique to each of us and are each very intimate invitations to use the Atonement. I personally like to think of each of us sitting down with Heavenly Father and having a "Father's Interview" with Him. A Bishop of our once explained it like this: Heavenly Father built us, so He knows our weaknesses and flaws. I imagine (and this is seriously my own imagination) Him kindly pointing out our flaws and the challenges He was going to give us in this life to help us overcome them... with the help of the Atonement. When we were able to see Him plan, we readily agreed to these struggles and trials, trusting in His plan. Of course, we have our ability to choose, but in each heartbreak, loss, grief, conquest, triumph, trial, and challenge, He is right there calling to us to turn to Him and rejoicing when we do and grow closer to Him and who He knows we can be. :)

I pray you don't see this as offensive or as a lecture, simply as sharing lessons learned. Our journeys are definitely unique, but I truly believe we are given others with similar trials to help and lift each other. I can't count the number of times you've shared your love and thoughts with me and how appreciative I've been. I'm in your corner, cheering you on! You are remarkable and I admire you so very much.

Sheyann said...

P.S. That was me, Sheyann! JJ used my computer and forgot to sign out of his Gmail account. Sorry to totally creep you out!