Our Evan, Our Hero!
My husband and I learned, through a sonogram, that we were going to have a very “special” baby in our lives when I was only 22 weeks along. Our unborn baby was coming to us with underdeveloped arms. He might not even have any.
WOW… What a shocker! Oh my… why us? All these fear filled questions flowed thru our minds and souls as a river out of control… BUT, after a few days, reassurance set it, and it was going to be OK. We moved from fears to… “OK, how are we going to do this? The only way humanly possible: Taking one day at a time. God entrusted this child to us and now we have to learn how to be parents of a special angel! Evan came into our world on May 26, 2004.
Evan has brought so much joy to our family’s lives and all of those who know and love him. We can sense the determination in him to accomplish things that a typical child would with do with ease. Plus his older brother Derek is definitely a great, and loving role model to Evan. Although Evan has short upper limbs, with three fingers in each hand, he does most things with his feet, which is amazing to see and appreciate that he can’t miss something he never had. I read/researched a syndrome, called Holt-Oram Syndrome, or Heart-Hand Syndrome. Our geneticist suggested that although all manifestations of this syndrome are present in Evan, the most important attribute to cause this syndrome, is missing. The syndrome is inherited as an autosomal dominant trait, which means this syndrome is inherited by affected parents.
Evan is our true hero. After his birth, Evan spent five days in the NICU, because he was also born with a large VSD (Ventricular Septal Defect). In other words, he was born with a large whole in his heart that would have needed repair in the future if it presented side effects that would damage to his heart. Well, good news is that the whole has shrunk to half the size it was when Evan was born. It could be because the heart is growing, therefore, outgrowing the whole in Evan’s heart. We think that the whole is being filled up with all the love we have for that boy.
Evan is always smiling. He is a very happy child and we are so blessed to have him. The things that Evan is teaching us are without a doubt the most sublime form of determination and courage. We feel privileged that God chose us to be the parents of one of his angels. Every day we learn about parenthood in a special way.
My heart overflows joy every time my son looks up at me and give me one of his best semi toothless grins. We never knew we could love this much.
We thank God every day for Evan, and for the opportunity of being the parents of a very wonderful child. It just does not get any better than this… Just look at that smile!
Evan is our hero!
My dear folks,
If you have a few minutes, I'd like to share this with you.....
Yesterday, Evan and I went to a little birthday party for my friend's daughter, who turned one year old. The event was at the Wendy's on Malabar road.
I sat Evan on a high chair, and he was just having a grand old time... looking around, wiggling his feet, giggling, dribbling, and amazed at the pink-haired clown.
Anyhow, I was deep in conversation with the little girl's great grandma, when a little boy of about 5 or 6 years old, named Dakota, with big brown inquisitive eyes, walked by and stopped when he saw Evan.
This is how our conversation went.
Dakota: Is this party for him? (looking at Evan) Marisol: No it is not. The party it's for that little girl, sitting over there. Her name is Alondra. Dakota: How old is she today? (still looking at Evan) Marisol: She's a year old today. Dakota: Does she like Dora the Explorer? (still looking at Evan) Marisol: Um, I guess she does. Dakota: Does he like Dora the Explorer? (now referring to Evan)
Marisol: I think he likes Dora the Explorer.
Then, the inevitable question I was expecting from the moment Dakota stopped to talk to us...
Dakota: What happened to his arms? (now touching Evan's little hand). Evan was smiling and giggling at Dakota. Marisol: Well, he was born that way. Dakota: Why? Marisol: Ummm, well, God made him like that. Dakota: Did he have a problem? (I'm thinking he meant if Evan had a problem in the womb) Marisol: Well, yeah, a little one, but he's OK now. Dakota: His arms ever gonna grow? Marisol: Maybe a little, but his arms will forever be shorter than most kids. Dakota: See? (bringing his arms up above his head) I didn't have a problem. Marisol: I know.. I see. and what is your name? (and he answered...) Dakota: What is his name? (holding Evan's little hand again) Marisol: His name is Evan, and he is a special baby.
The following were Dakota's words as best as I can remember, because by then, I was busy fighting back tears.
Dakota: Yeah, Evan is a special baby, because God made him special. So we have to be nice to him, and not call him ugly, um, because that will hurt his feelings. Yeah, and, and, we have to be nice to Evan and play with him and help him out if he falls because his little arms are short. Plus, God loves him anyways, and baby Jesus too.
Marisol: Yes, you are right Dakota, God loves him and so does baby Jesus.
Dakota looked at me and smiled, smiled at Evan, touched his arm once more, and ran off to continue playing with his friends.
A child, a stranger to us, was being curious, YET, kind and gentle, toward my special Evan. My heart turned to mush.
Dakota's innocent, genuine, curiosity took me for a loop. I studied Dakota's every expression as he was asking me questions. He never used the word "weird" or "funny" and I was expecting that, but it never came. I was thrilled that a child, a stranger to us, could be so sensitive toward another's unique condition! Dakota's loving approach was like Evan's big brother Derek's loving approach : totally and completely unconditional.
I pray that God continues to place kind people like Dakota (and you) in our lives, and the courage when we come across people not so kind.
Thanks for reading.
Have a blessed day!
Update March, 2006 - More great photos of our little SuperHands Kid!
Here I am playing with my singing elephant
Here I am helping Daddy work on the Mustang
Check out my cool "speedway" tank top. I want to be race car driver one day.
See? I can handle tools
Evan needed heart surgery after all. He underwent open heart surgery on January 19, 2006. He was sent home 48 hours later and on February 15, 2006 Evan was given a clean bill of health by his cardiologist and is no longer in need of his heart medication!!! YAY YAY!! Wooweeee!!! - We are smoooooth sailin' now baby!!
For those of you who do not know, on February 15th, Evan was given a clean bill of health by his cardiologist and is no longer in need of his heart medication!!! YAY YAY!! Wooweeee!!! - We are smoooooth sailin' now baby!! THANK YOU GOD!!!
Scott once told me... - I shot a straight arrow and I have been riding on it! - Many would raise a skeptical eyebrow to that comment, but I guess staying positive, the love of our family, and the love and prayers of caring folks is what has been our driving force to have a different perspective ... You know the saying "If life gives you lemons, then learn how to make lemonade"... That's exactly what we have been doing - although, I'll be honest, sometimes we would LOVE to have some iced tea, instead... HA HA!! Oh well... What can we do?
Someone dear to me - I'm going to call her Sally - a while back told me some people would say "Oh, I don't think I could go through all you've been through" - (true statement, I have had people say that to me) - and then she went on to saying something like -- "the truth is that if anyone was to go through something like that, he/she would have no other choice BUT to go through it... the person can go through it with the right attitude or with a bad attitude, but regardless, he/she would have go through it - you choose to always have the right attitude."
Do I? Really? Maybe, most of the times. I know for a fact that I could not have done this by myself - God and folks like Sally and the little things they say make all the difference. No offense, BUT, people like Sally have their own lives to live are not the ones going through my situation. I understand they are not obligated to say nice things, or say anything at all... BUT they do... out of love or compassion, they do and it makes all the difference. It gives us hope. I know then my family and I are still surrounded by good people who are willing to speak a kind word of encouragement and offer helping hand in any way they can, weather they mean it or not, still leaving a door open for us.
Guys, I am not all that strong. God is my sustainer and my strength. Although I have learned to recover rather fast and I do not dwell on the negative for too long, I still have had my meltdowns - they don't last very long though. Having "moments" and "meltdowns" and "tantrums" are all part of being human, right? Right.
We are blessed and we are SO very THANKFUL to God and to all the "Sallys" (both male and females) in mine and my family's lives. Your actions we have imprinted in our hearts.
May God continue to bless you always and in abundance. May you and your family always be in good health!!
With much love,
(Enjoy the pictures! :))
Marisol & Scott Wilke
"For better or for worse"
Update July 2006
Another milestone for Evan... Silly as it will sound, to us is a HUGE deal... Evan is now able to hold a zippy cup and drink from a straw. This awesome zippy cup is spill proof AND the straw is part of the cup ... He can also hold a 'poon' (Evan's enunciation for "spoon", but it really is a fork, ....... a plastic fork) and somewhat feed himself.... Please note, that in order for me to have him eat string beans, I had to take approximately 30 pictures.... Hey, whatever works!! :)
Why is this such a big deal for us? Evan is two years old, and until a week ago, we were still assisting him with his drinks, so every time he would say "wawa" (water) or "yuyu" (juice), we would drop whatever we were doing - except while driving, then he had to wait- and give him a drink... A few days ago, I was washing some dishes, and Evan came to me and asked for me for his juice; without even noticing, I just handed him his cup.... he grabbed the straw with his teeth and walked off with his zippy cup in hand.... I stood there, and I felt a twinge in my heart... "oh man.. he is not needing my help anymore in that area." I was overjoyed .... again he showed me that he is and will continue to figure things out at his own pace and within his abilities. I was so proud and thankful!! ~~THANK YOU GOD~~ :)
One thing I still I haven't stopped doing is... at night, when is time for bed, I sit on the couch with Evan and give him his milk.... It is the time, when he is all mellowed out... Ah, and his hair smells like lavender... :)
I know I may be making a big deal out of this, but it's OK. Because you have shown an interest in Evan's progress, I am sharing these little, yet BIG milestones, with you all.
Thank you for your time... Enjoy the pictures...!!
May God continue to bless you and your family always and abundantly!!
Update January 2008 - Sweet Bitterness
Just like Chicken Little said “The sky is falling, the sky is falling”, so did Evan on New Years Eve 2007 at my sister’s and her family’s home. “Mommy, mommy, uncle Randy is blowing up the fireworks” – Evan exclaimed in his pitchy three year old voice. Now let me explain, Evan does not like fireworks up close and personal- but at one point uncle Randy lit up one of the rockets boosters or whatever you call them … you know the ones that go up in the air and blow up in the sky to a gazillion little starts… pretty cool stuff, huh? Anyways, watching from Titi’s bedroom window, Evan saw the sky lit up with red, white and blue… Or was it just red? Oh well, I don’t know because I wasn’t there at that very moment… but Evan was there and saw the sky falling.
It just amazes me how “aware” Evan is becoming, which indicates that he is growing to fast for my liking… HA! (I know, I know. It isn’t about me…)
So yesterday, Evan and I went to our favorite grocery store – Publix on Bayside. The associates there know our family and are very fond of Evan, even though sometimes he acts like a total stinky bear, especially when folks try to give him the red “Publix loves kids” stickers… I am the one who ends up wearing the stickers most of the times…
Anyhow, Evan and I are waiting on our order at the deli department – after a few minutes go by, I see Evan looking at someone that was standing sort of behind me. Then in a very, and I say it again, VERY, loud and annoyed voice, Evan shouted… “SSSSSTOP LOOKING AT ME”. The urgency in his voice brought me back to reality as I was just daydreaming about something … again he yells, “STOP LOOKING AT MEEEEEEEE… STOP IT, STOP IT”… Then I asked Evan what was wrong, and he said clearly and very loud… “Mommy, that boy is looking at me”… I turned around to see, in fact, a boy and also his parents standing about, waiting for their order to be processed. The boy seemed to be 10 or 11 years old.
After a few seconds I realized that the boy wasn’t just looking at Evan, but he was staring at him. Oh yes my friends, I’m sure you know that it is the norm for our family to have that reaction from folks – for us to be stared up and down when we go places. Right before I walk in to any store, doctor’s office, or what have you, I pray “God allow me to be able to rise above the stares and the eyeing scrutiny and assume my responsibility lovingly and even love the person that hurts me or us today”. God has provided a thick skin for our family when it comes to staring eyes, at least for me it has. I understood very early on that not every one will show dignity toward Evan. I had not choice but to make myself understand, or at least accept that fact. I have always said that I do not want the world to show pity toward Evan, however, for him, I will always demand respect and to be treated in a dignified way. That is, until Evan can do that on his own and yesterday Evan showed me that he will do just that. You know, at the beginning for me it was (and sometimes it still is) difficult and sad, to be the center of attention because of Evan’s imperfection when folks look at us and I can sense that they are either feeling sorry, or even worse, horrified, like if it was contagious. Hey, Mom, it is what it is and that is the nature of the beast… Just continue to look forward and focus on the sky.
Sometimes it is even comical to see how folks react… you can see the discomfort in their faces and body language as they rush their children away before they blurb something innocent like “Mommy, Daddy, LOOK! That little boy has little arms”… Some parents are totally indifferent, which to me, it’s totally OK!
So I as realized how bothered Evan was for being the center of attention and not in a good way, I did and said what I always do…. “Evan say ‘hello’”… and tried to engage Evan and the other folks as well. I guess to try to make an uncomfortable situation a little less, well, uncomfortable for them – not for us. I try doing this by engaging in salutations and conversation. Most people sense our, or should I say MY, approachability (is this a word?), and then they return the salutations and we exchange a few small pleasantries and move one with our lives... Sometimes it works, sometimes it doesn’t. When it doesn’t work, I just continue on my merry way… What made it so different this time that I had to write about it? Evan was a step ahead of me this time …. He caught on before I did and that just stabbed me. Now THAT is something that I will have to learn to cope with and ask God for wisdom and guidance and like with everything else… just move on and look forward.
I wasn’t disappointed at the boy for staring. How could I be? He didn’t know any better and perhaps the boy may have wanted to approach Evan and say “hey little buddy, what’s up” – but that I will or may never know that. However, I was unfairly disappointed with the parents because they made it known that they weren’t interested in small talk. C’mon Marisol… silly me. How can I make someone do something they don’t feel comfortable or just plain simple, do not want to do? But honestly I wanted to yell at them… “Helloooooooooooo…. Now may be the right time to teach a lesson to your child about sensitivity”…. But what do I know what goes on in their own lives, what values they have, or if they even have a special needs person in their own lives. Folks will never know or understand what it is to have a special needs person -- until they have one of their own. So shame on me for being disappointed on people I don’t even know.
So that night (last night), I went to the gym… I needed to blow some steam about my afternoon event. I headed to the treadmill closest to the western wall. I was undecided weather I wanted to just power walk or run… run nowhere fast! (Runnnn Forrest ruuuuunnnnnn!!) I stepped on the one treadmill before the last. There I was in between two empty machines… As I am setting my pace, two big guys (they were obviously buddies) stepped on each of the empty treadmills, and they were talking, but I couldn’t hear because I had my MP3 on and I was jamming to Casting Crowns… I thought to myself “here I am, Mrs. Marisol, between Mr. Bod and Mr. Axe and if they think they are going to take me on, the have a rude awakening coming … Please note: I was already heated for what had happened earlier… Man, I pushed up the speed on that treadmill and it was on! Mr. Bod and Mr. Axe kept giggling about something and I saw them checking out my stats on the LCD screen, but I didn’t care my MP3 was now rocking Amazing Grace by Todd Agnew... I OUT RAN THEM BOTH!!! Oh YES I DID!!! I was your true Forrest Gump…”I just felt like runnin’…..”
Thank you for letting me share these little moments with you all. May God continue to bless each and every one of you with much health and abundance!!
Thank you for reading!
Happy New Year! Marisol
January 3, 2008
To communicate with Evan, you may contact his parents via email.
If you want to be a SuperHands Kid or Hero, or know any inspiring stories that would be a benefit to this site's viewers, please send me an email.