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".

Rockhill's Triathlon Inspiration

A very good friend of ours, Tom Rockhill, has become quite the athlete these past few years. Rockhill has trained and participated in many road races and a few triathlons. Now he will be competing in the Sandy Beach Triathlon, in Evan's honor, here in CT next month. He is on a mission to earn donations which will be given to the FIRST Foundation in Evan's name.

I was so touched that Tom wanted to run in Evan's honor. It will be so wonderful to be standing at the finish line with Evan rooting him on. Not only are we very excited and proud of Rockhill for his dedication and willingness to help earn donations for FIRST, but it will also be the first time we have seen him in years. We all grew up together in CT but Tom has been living in Florida for years and we unfortunately have never made it down that far south. It will be quite the party once Tom gets back and we will not only reminisce of the 'olden' days but will create new memories and OF COURSE introduce him to our little warrior.

Rockhill has a blog to promote his Triathlon. Feel free to check it out. Rockhill's Triathlon Blog
It is hard for me not to giggle at some of his posts... I guess you need to know Rockhill to understand his humor.. or maybe not!!!!

The Tri-Athlete

Our First Family Vacation

We traveled to Ocean Isle Beach, North Carolina this past week for our annual vacation with my side of the family. This was the first time my husband and I went on a vacation together with Evan. The flight down to NC was very smooth other than the AC not working properly on the layover flight. At least we had time to get a bag of ice from the flight attendant before take off, since the spray bottle wasn’t doing a justice! Evan did well otherwise and we were so excited to arrive and start our vacation.

Giving the pool a try..

In the beginning of the week, we lucked out with some cooler and cloudy weather. This gave us the opportunity to do more things outside with Evan. We tried the pool first but he was not happy with the temperature of the water (even with all of the distractions from his cousins). Then we walked down to the beach to give the ocean experience a test drive. I think it was a little intense for Evan since the wind was whipping and the water had cooled down significantly. He was not the happiest camper when we stuck his feet in but at least we tried.

Unfortunately my husband had to head back home in the middle of the week for work. I was definitely bummed since he rarely gets a real vacation and now I would be taking care of Evan without him.  Luckily, we were able to go out to dinner alone before he left, which was a nice treat. My sister was watching Evan for the first time ‘alone’ and initially I was nervous but then actually was impressed at how well she did. (I have the tendency to tease her about her lack of babysitting experience)

The typical NC heat returned pretty much the day my husband left, so hanging out outside was limited. We managed to get outside here and there since all Evan did was reach for the door when we were stuck inside. But Evan was definitely entertained by his 6 cousins ranging from ages 1-12 years old. All he seemed to want to do was be around them and watch them play. Hopefully sooner than later he will be playing with them too.

Best time of day to be out with Ev

As the week wrapped up I was becoming exhausted with Evan’s out of sort routine. I had a ‘sad’ day the last day we were there especially since it was the hottest day of them all. It finally hit me how challenging life is going to be for Evan to do the simplest and most exciting things in life, a beach vacation. That day it was so sad for me to see all of my siblings and Evan’s cousins get to enjoy the beach so carefree. Once Evan is walking and talking, Im sure it will be ‘easier’. I was also hesitant to even bring him down to the beach (when the temp was right) after an uncomfortable encounter with some strangers a few days earlier.

I was offered a lot of help, from family members, to take care of Evan but didn’t take much of it. I was too nervous to let anyone else bring him outside and be the judge of his temperature. I got a few hours here and there to get down to the beach and jump in the pool. It was definitely a different experience being on vacation with my child. Never mind a child who is 2 and still cannot walk, talk, sit or eat well. I think if I had my husband with me for the entire week I would not have felt so overwhelmed.

Having fun with Uncle Matty's drumsticks

Hopefully next year Evan will be begging me to go to the pool and go down to the beach. I can’t wait to hear his little voice ask me questions and have a conversation with me. A lot of what I took from this vacation is that I hope others do not take their life for granted and appreciate how ‘easy’ the simplest things in life are (like going outside, flying a kite, swimming in the ocean, going out for ice cream, or even sitting in the sun). All of these are things we either struggled to do or did with a lot of preparing and planning.

All in all, it was so great to have my entire family together. Evan definitely learned a lot watching his cousins and he had so much social interaction. He experimented with new types of crackers and snacks that his little cousins were eating and has a new thing for straws thanks to his cousin Aaron. Now home, I think he is wondering “Where did all the kids go?” Soon enough they will all be together again.

The 'Clan'