Blogged Out

I feel blogged out.  Lately, the heaviness of Waverly & Oliver's diagnosis has worn me down.  I spent some time last night watching old videos of Waverly when she was almost 2 years old.  I sometimes avoid the photo albums and dvds because they reveal too much...all that Wavey has lost becomes so real.  But last night I was in the mood.  I actually wanted to hear her voice.  I wanted to remember.  And there she was - the MOST beautiful little girl.  She was talking about the "woo-woos" (Wiggles) and "melmo" (Elmo).  She was calling for her cousin "mel-moo" and said "cheese" & "bye-bye" every time she spotted the camera.  Her smile was huge and her eyes were so bright.  It was so lovely to see her again, yet my heart broke thinking about how much this awful disease has stolen from her.  And my mind turned to Oliver.  It was almost easier not knowing and just enjoying Waverly.  With Oliver I am always watching, waiting for the signs that the disease has begun to steal him away from me.  I am terrified each time he forgets where his nose is or stops signing a word.

I love my kids more than anything in this world.  I take joy in them every day.  But there is sorrow that so very few of you will understand.

Comments

Anonymous said…
This road that you're on is unimaginable. If taking a break from the blog is best for you, please take it.

This poem gives me some comfort. I wish there were something more I could offer.


WHEN I heard the learn'd astronomer,
When the proofs, the figures, were ranged in columns before me,
When I was shown the charts and diagrams, to add, divide, and measure them,
When I sitting heard the astronomer where he lectured with much applause in the lecture-room,
How soon unaccountable I became tired and sick,
Till rising and gliding out I wander'd off by myself,
In the mystical moist night-air, and from time to time,
Look'd up in perfect silence at the stars.


-Walt Whitman
Christine said…
Anytime there is a condition that makes a child less than whole, there is sorrow, at least in the early years of the diagnosis, and probably for much longer. What diagnosis is worse than this? Few. Feeling sorrow doesn't mean you appreciate them any less. And it doesn't mean you aren't loving them just the way they are.

No one can ever say, Shannon, that you are anything less than a phenomenal, incredibly loving, accepting mother. And no one could watch old home movies like you did, and not feel terribly, horribly cheated. I honestly do not think that feeling cheated in this case is a sin. I don't think there is something missing in you--something that would suddenly make it all stop hurting, leading to gladness. The only thing you can do is walk through it, and know that God appreciates your good and faithful servanthood. I know God helps you with the pain, and gives you times of joy in the midst of it, but you are still a flesh and blood mother with flesh and blood feelings.

If the blogging has been good therapy, keep it up if you can. Write what you feel, and don't worry about how someone might misinterpret it. Grieve anyway you want. This is your space.

Sending love and prayers.
E said…
Thinking of you and praying for you tonight. I cannot comprehend what it must be like to walk in your shoes, but I am praying that somehow God will bring you comfort. You are a wonderful mother.
Cari said…
Sometimes the tears feel endless. I understand and wish I could take away the pain.
Joanne said…
Shannon,

Sending an offering to you of much love and comfort. This disease is so cruel, and so overwhelming with it's emotions.

I know you are able to persevere through today into a better tomorrow, yet it still doesn't take away that pain. Many tears and hugs shared with you, Joanne
Anonymous said…
I imagine you often feel alone as you look around at all the healthy chidren in your community and the world. What you are your family must endure is unimaginable and unfair. I admire the way you mostly live in the moment and love your kids so well. Be gently with yourself. You are doing an amazing job.
I have no words of wisdom for you, but I wanted to let you know that you're in my thoughts and prayers. If I lived near you, I'd come give you a hug (you know, if it wasn't weird for some complete stranger to come up and hug you).
Tari Reph said…
Shannon, I pray that the Lord will take this time when you feel as you cannont walk, to carry you through. You are an amazing woman.
Ditto to all of the above.

Praying for you today.
Anonymous said…
Shannon,
I have not met you and do not know you but through your writing I have come to love you and your children. I know you are a wonderful mother who cares deeply for your children. What you are going through ~ not many of us could bare. You are doing the best you can and God WILL reward you for that! Trust and rely on him. Only He can lift you up. Know that many are praying for you today!
Cheryl Ezell TU '81
Laura said…
Shannon, I'll miss your writing but totally understand why it's too much right now. I check your blog every day looking for insight and always find some. Let's keep in touch. Call me sometime.
Laura Thorsrud
Jen said…
I'm so sorry. I wish I could take this from you.

You are in my prayers.
Katie said…
This post immediately brought me to tears because my two year old son loves the Wiggles, and he refers to Elmo as "Melmo," which we find so cute. You are right, I can only begin to even scratch the surface of what you must be feeling. Your children are beautiful and you provide them with so many special experiences. I am so impressed with your ability to live in the moment. Know that you are and will continue to be in my prayers.

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