Friday, July 13, 2012

On My Way "UP"

For about two weeks now, I have been in (what I refer to as) a 'funk'. After our vacation to the beach, the intensity of Evan's care and the obvious challenges he faces hit me like a ton of bricks. It wasn't the typical sadness I have felt before, where I would cry, 'get over it' and then continue on with my day. It was a sadness that wouldn't go away. No matter who I talked to or how many times I talked or thought about it, I was extremely emotional. My friend Courtney, another "Ichthy" Mom, mentioned that I may have, finally, hit my grieving period after being so strong for so long. I agree, since I had never felt this way before and had finally let the intensity of Evan's care take over my emotions. 

Not only have I been overwhelmed with Evan's care, but thinking about his future and the hurdles we face, was bringing me down. At the beach, it was obvious how many limits there were for Evan. We didn't get to have a real beach experience since the heat and sun kept us indoors most of the time. This made me realize how many things Evan will not get to do or as carefree as most do. It made me think about his future and how these limits are really for the safety of his life. Just to think about how worried or concerned I will be for Evan to play mini-golf someday makes me sad. He wont get to 'just go' and play but will have to with a cooling vest, lots of water, a hat, sunglasses, spray bottle, and will have sit in the shade and might not even be able to go if the temp is over 80 degrees. 

During the time I have been in this 'funk', I have become much more defensive and aggravated with strangers staring at my beautiful boy. While in a rest area on our way back from NC, I could not get over the stares, looks and dropped jaws as I walked past with Evan. Rather than ignoring them as I usually do, my emotions were building with anger and frustration. I still do not understand how some people could be so cruel and RUDE. I have NEVER been one to stare at someone who was 'different' and on the rare occasion that I may have, I would never be looking with a dropped jaw or have a disgusted look on my face. This is a challenge that I hope Evan does not have to worry about in his life but it unfortunately will occur at times.

I feel selfish for complaining when our challenges do not compare to others who may be living with a condition more severe or life threatening. So in a way I am still grateful for not having it the worst. I also feel guilty for even being sad or becoming emotional. I have always put on my happy face and have actually been very happy considering what is on my plate. But these last few weeks have been dragging for me. Fortunately I have been "On My Way UP". 

I recently inherited my grandmother's baby grand piano after the recent passing of my grandfather. My grandmother passed over 17 years ago and my aunt has been the owner of her piano since then. When I was told that my aunt was passing the piano on to me, I was thrilled especially since my middle name is my grandmother's name, Evalyn. My aunt was cleaning out the piano bench, which had not been done since my grandmother passed 17 years ago. Inside she found a newspaper article that my grandmother saved. It is obviously from the late 60's 70's based on the clothing being worn on the other side. The article is titled "Why Some Mothers Are Chosen by God"

The article found in my piano bench
circa 1970? 

"Why Some Mothers Are Chosen by God"
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.

"Forrest, Marjorie, daughter. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint...give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it.

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word." She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see....ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

I had to reread the article about 5 times since I was crying. This time it was not a sad cry but a happy one. I could not believe that my grandmother was sending me a sign and message which brought me clarity and optimism about being the mother of a special needs child. I was so amazed at the coincidence that my aunt, who had the piano for 17 years, had not gone through the piano bench until it was ready to be shipped to Connecticut. I feel so connected with my grandmother now. She always has a way of letting me know she is watching over and protecting my family. Just like when Evan was born and my grandfather's first response to hearing his name was "Evan for Evalyn". Which I didn't even realize when we named him.

This 'sign' has lifted my spirits and I'm on my way back "UP". I am glad to be over this spell which was thankfully broken by my grandmother's spirit. It's true that things happen for a reason. My husband and I were meant for each other and we were meant to be the loving and proud parents of our young warrior, Evan. Now the only place to go from here is "UP".



  1. Sheesh Dede.... tearjerker!!! You should be so proud... this story is amazing, as are you. You are certainly the 'patron saint' Evan needs in his life. xo CW

  2. New follower here! I have an 8 week old baby girl with some form of ichthyosis. I've been dealing with a lot of the same emotions as you and it is so reassuring knowing I'm not alone.

    That article is amazing! What a blessing to find it. I read it to my husband this afternoon and it made such an impact on us both. Thank you so much for posting it. We are praying for your family and sweet Evan!

  3. Wonderful post! I also have a son with with a rare skin disease as well. Stay strong! Sending positive thoughts your way!