Erik Quinn: The Heart of a Family: Combat

Thursday, August 17, 2006

Combat

Last night Brian and I finally sat down to watch the two DVDs I ordered from the Williams Syndrome Association. I made some tea, lit some candles, and tried to relax with an open mind. However, despite this, I felt like I was going into battle. The first DVD was Scientific American Frontiers: Growing Up Different. There were four segments, each on WS, autism, cerebral palsy, and deafness. The segment on WS was short, and I'm grateful for this, as it was my very first glimpse at older children and adults like Erik. In short, it was so painfully intense and telling, it took my breath away. It took place at a California WS picnic and in a laboratory. I was first struck by how profound some of the physical features of WS were. I recognized the familiar upturned noses, crooked teeth, and wide mouths, but in some cases, backs were horribly deformed and skin seemed cruelly tight, especially in some older individuals. I can hardly bear the thought of my son's features looking more like WS and less like us as he grows. I was also struck by how much older some of them looked than their true age. There were teenagers who looked and moved like little old people. The program repeatedly demonstrated how people with WS were often unable to copy a simple shape, add single digit numbers, or tie their shoes and yet easily recognize pictures of faces better than normal people in a laboratory setting or sometimes play multiple musical instruments by ear. I fell instantly in love with a few of the adults and kids featured, and I laughed through the tears that began to flow, especially as I recognized physical and emotional traits I see every day in my own child. What an extraordinary experience this was. The second video contained a 60 Minutes segment titled A Very Special Brain and some random news segments, presumably from the Midwest. In the 60 Minutes segment, Morley Safer visited a WS music camp in 1994 and followed up in 2004 on the children he had met who are now young adults. My heart broke into a million pieces as I heard stories of people who "know they are ill," some of whom asked their parents why they had no friends or why nobody asked to do things with them. When one parent explained how her daughter yearned for someone of her own to grow old with, even old Morley Safer's eyes began to water. I had to get up and get a Kleenex at this point. There was a story about a non-WS brother who was very angry for years because he had been cheated out of a "normal sibling." There was an interview with an older woman who expressed excellent insight as to what it is like to grow up with a disability, and she sparked the first glimmer of hope in my heart all evening for Erik. However, after we were through watching, I went to bed with a sense of dread.

After a day of looking at the big picture, I remember strange-looking human beings who were generally kind, caring, happy, and talented, yet profoundly lonely. What kind of a world is it when babies are born programmed to love other people so deeply and yet made to look and act so differently that they are often shunned? I honestly don't understand. When I stated in an earlier post that people talking to Erik probably won't think anything is wrong with him, I now understand that although that is possible, the reality is that he will likely look and act very differently from the people around him. That is a very bitter pill for me to swallow, but it is reality and precisely what I needed to see for myself. What I was not prepared for was that I knew many of the faces featured in these videos from photos in case studies I have here or from articles on line. Upon seeing these people on video, they were not even close to how I had imagined them. They were much more severe. There was simply no denying that they had a disability and were mentally retarded at various levels, and I would be lying if I said I was prepared to see this. That was a very unpleasant surprise. I envy the parents who were interviewed because they are light years ahead of me in this emotionally and have waded through much of the muck of mourning already. I wondered if they ever found themselves awake in bed at night wondering if they were being punished by God somehow or thinking what awful people they were for wishing that their child was normal. Truthfully, I think these things. I am a fairly rational, educated woman who knows better, but these thoughts torment me occasionally at this stage of the grieving process. In the dead of night, there is no escaping my nightmares, no matter how many years of school I have under my belt or how rational I am in the light of day. If there is someone else reading this who thinks the same things, and I am guessing that there is, for the love of God, just let me know somehow I'm not alone. I am sick to death of a society in which we don't talk about unpleasant things or the simple truth. In the end, it only makes a person feel isolated and like a freak show.

Oprah Winfrey talked about pain the other day. She said that being an adult simply means enduring pain that sometimes brings us to our knees, in whatever form it might manifest itself -- that's life. However, she said it was possible to take this pain and make something great and powerful from it. That really stuck with me and inspired me. I am hoping that sharing my highs and lows will give me power somehow and maybe even strengthen others. I am hoping to find other ways to do this as Erik grows. Would I change things if I could? In a heartbeat. Most of the grief I have isn't for me, although that is an undeniable part of what I am feeling. My heart breaks because of the pain and loneliness my forever vulnerable boy will endure in his lifetime, and it hardly seems fair to me that the innate sensitivity he was given genetically will make its sting that much worse. I love him even more for that and hope to provide him with the refuge and support he needs until I take my dying breath. He is my greatest love, and I would die for him without hesitation. It is my mission to ensure he has a happy life, knows he is loved every second of every day, and is safe and cared for, even when Brian and I are long gone.

Maybe I am going into battle after all.


THROUGH THE RAIN
song by Mariah Carey

When you get caught in the rain with nowhere to run
When you're distraught and in pain without anyone
When you keep crying out to be saved
But nobody comes and you feel so far away
That you just can't find your way home
You can get there alone
It's okay, what you say is

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

And if you keep falling down don't you dare give in
You will arise safe and sound, so keep pressing on steadfastly
And you'll find what you need to prevail
What you say is

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

And when the rain blows, as shadows grow close don't be afraid
There's nothing you can't face
And should they tell you you'll never pull through
Don't hesitate, stand tall and say

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

I can make it through the rain
And I live once again
And I live one more day
And I can make it through the rain

You will make it through the rain

11 Comments:

Blogger Kati said...

Nancy, you are not alone!!!!! I feel the same way as you do.... Sometimes I can hardly imagine why I am not able to get through this, but one day is better, the other is worse... Everybody said that the time'll solve these problems, but it seems it doesn't work in my case. When I think everything is okay, a simple word of somebody's mouth or a picture, an advertisement in the TV or sg. little thing recalls all my misery. I love Szabi very much, but unlike those mums who said they won't change their ws-child, I'd do it if it'd be possible... but it is not possible.... So I try to live day by day, not to imagine what will be a few years later... It 's so hard to me, because I was a big planner, I was full of ideas, projects, but I feel my ex-world collapsed, I have to build a new world for us, but I don't know where can I start it. I didn't really beleive in God, but after the diagnosis, I said that if he is exists, please snuff out... Sorry if you beleives in him, and I apologize from the others, who beleives in God, but it is only my opinion.
Sometimes I feel that I'll be bitterer from day by day, I try to fight against this feeling.
The words get new senses, now I can intercept the real meaning of NEVER, ALWAYS etc. My husband doesn't know this, I tried a million times to explain the whole ws-thing, but he doesn't want to understand it, I think he is luckier than me, he is only locked his head and just see a loveable little boy. Maybe he doesn't want to show me how he is despondent. So I gave up and there is a few time only when we mention ws.
To be honest, now I am not happy in my life, but I try to make my best, I try to smile and laugh a lot, but sometimes it is hard for me. And I don't know what the future holds for us...

12:18 AM  
Blogger Lisa R said...

Nance,
Great Post and Poem...You are so not alone.

I watched the 60min thing with Chris shortly after we received Tate's Dx, Aspen sent it to us, and it was hard. The young girl going to college with no friends broke my heart and made me cry as well. I just keep thinking that my baby girl was going to be lonely.

I also have a big fear that Emma well someday resent not having a normal sibling. There is nothing that I can do about that anymore even if I wanted to. All I can say to her is this is not what my plan was for either of my girls.

I always say that I would not change a thing about Tatum but actually face with the opportunity I would fix her in a second. I do not mean this in a bad way I love both my girls with every fiber inside me but who doesn't want the perfect little family. I am sure it makes life that much easier.

So remember you are not alone or crazy and I love you very much. xoxo









Lisa

6:34 AM  
Blogger Amy K said...

On so many levels I cannot comment, I am in such denial of the future and know these things you write are true, but don't want to know either. However, I also understand that cruelty and ridicule WILL be a part of our lives. And it makes me vehemently sick the level of intolerance that our society accepts and exhibits on a daily basis. Society’s value system is way whacked out. We admire sports figures that are rapists and actors and actresses that are adulterers, bigots, addicts, and liars. The only hope I can hold onto that is in the next couple of decades society becomes more tolerant of others that are not like us. We can show respect and interest, wow, maybe even become the friend of a person that is different and encourage our friends and family to do the same. INTOLERANCE IS CRUELTY (remember Adolf Hitler?) and you can help by teaching others around you that different isn’t only ok, you can be enriched as a human being by mentoring or befriending a special needs person.

6:35 AM  
Blogger Kerry said...

You are not alone. I definitely have the same fears, ideals and dreams that you do too.

When we had difficulty having our second child after wanting at least three kids, I felt like my life was not going down the path I had envisioned. Now my kids are seven years apart and I'm not sure if a third is in the cards for us.

I do see things a bit differently in some ways. I think I am definitely more sad for me, I am embarrassed to say. I am more sorry I won't have my "perfect" little family. When I watched the Morley Safer video, I instantly felt better because I think as a whole they were happier people, even with some of the sad times, than other adults. This made me think that it will be more of MY problem in some ways than theirs (acceptance).

More importantly I think the advancements in Early Education and other medicine will result in our children having more benefits than those previously. Brdy started EI at four months old -- I think that will be a huge difference from someone who didn't get a diagnosis until they were 42, as was the case of one of the individuals in the show. I have to hold onto that belief that it will make a difference. I would be interested to see the progression of a child with WS from about 2000 or later who have most likely received services in a more advanced state.

I also hope, as Amy pointed out, that tolerance will be more widespread, and I think it should be. Although we hear of cruelty, tolerance is definitely more widespread than when we were kids. They actually TEACH that stuff at school now.

It's hard for me to sit and think constantly about how different Brady is from others. I tend to focus more on what he brings to us, and how he has changed our lives for the better. I feel like if I start to get into that mode about what he isn't I will miss out on why he is here.

Our kids will always have each other too :) We should start a yearly get-together soon.

7:28 AM  
Blogger Aspen said...

My dearest Nancy,

I have been searching for the words to say for almost 30 minutes now. And frankly, I have come up short. I can only simply say that you are not alone. There is nothing you could say to me (and to most of the WS moms) that we wouldn’t be able to relate with in some way. I have found a cherished confidant in you and I hope you feel the same about me.

The things we feel and think and dread on a daily basis can be exhausting. I too remember watching that video with pure despair in my heart. When the doctor said “they are normal enough to know they aren’t normal” I completely lost it!

I know that my words seem so insignificant, but I wanted to let you know that no matter what your thoughts and fears might be…we all have each other. And that to me, is one of the only comforts I have some days.

I love you dearly!

Aspen

9:05 AM  
Anonymous Lisa Reynolds said...

I have to say that I have not seen the video and I'm not sure I want to. I pray so bad for my baby to be more than a ws child. I keep telling myself that he's better than what I've been reading about the other children.

I fear I am really in denial, but all I can do is hope for the best. My Matthew truly is a blessing but I do wish that he did not have ws.

3:46 PM  
Anonymous Kim Monahan said...

Nancy, I have been holding on to a can of worms that I just haven't wanted to open. Ava's mom had an aunt with Williams Syndrome. I knew her before Ava came along, but no one told me what was "wrong" with her. They would say "she has the mind of a child". He name was Paula, and she recently passed away (May '06) due to a bowel obstruction. Paula could not tie her shoes, cross the street by herself, or even write her name. HOWEVER, she could speak Spanish and play the piano. She read the entire newspaper every day. She talked to the toaster, loved Teen Bop magazine, and absolutely loved her church family. She lived with her parents all her life. She had two siblings. One couldn't deal with her and the other, Ava's grandpa, adored her and spent a great deal of time with her. Physically, Paula was very tiny. She had a very long philtrum, the classic WS nose, starry irides, and her hair turned grey very prematurely. She looked older than her 80-year-old mom when she died. She suffered from digestive issues, hypercalcemia, and kidney problems. She was on dialysis several times, but always bounced back. She had very poor dentition. Her teeth were literally gold in color. Her favorite foods were pudding and pbj sandwiches. One time my son, Justin (Ava's daddy) told her she looked pretty and she giggled like a schoolgirl. You simply could not dislike Paula. She loved everyone! At her funeral the pastor announced "Paula never met a stranger". I cried like a baby, because I knew in my heart that my beautiful Ava will be just like Aunt Paula. There are still times when I just get furious that this happened twice in one family! Wouldn't the geneticists have had a field day with us??? The bright side is that this woman was loved by many people, no matter that she was "different". I often wonder how her life would have turned out had she had the benefit of a diagnosis (no one had heard of WS in her day) and early intervention and therapy. Other times I worry that all the therapy in the world isn't going to change a thing. Damn it. What I do know is I love Ava, probably even more because of her syndrome. Yeah, it hurts to think about her future. I cry alot, both for her and her parents. I guess one day at a time is all any of us can do. Know what? I think you and the other blogger moms are amazing women and I truly treasure reading your messages. Hang in there, girl.

8:28 PM  
Blogger PASLAY'S FROM IDAHO said...

THIS MORNING I WOKE-UP AND KNEW THAT IT WAS FRIDAY AND MY CRAZY WEEK WAS ABOUT TO END! I WAS SO EXCITED THAT I GRABBED A CUP OF JOE AND SAT AT THE COMPUTER HOPING YOU HAD WROTE A NEW ENTRY FOR TODAY ALL ABOUT MY FAVORITE ERIK! AS I READ IT... MY HEART BECAME HEAVY AND I HAVE NEVER CRIED SO HARD READING ONE OF YOUR ENTRIES AS I DID TODAY!

FIRST I WANT TO SAY HOW I AM SO THANKFUL THAT YOU HAVE NEW GIRLFRIENDS... ASPEN, LISA, TERESA, KERRY, KATI AND I AM SURE THE LIST OF NEW GIRLFRIENDS GOES ON! WHAT A BLESSING THAT THESE PRECIOUS NEW FRIENDS CAN BE THE PILLARS IN YOUR NEW WORLD AND GIVE YOU COMFORT, ADVICE, FRIENDSHIP, HOPE, LOVE, CHUCKLES, STRENGTH, BE ABLE TO TRULY SAY "I HAVE BEEN THERE" AND JUST TO BRING LIGHT INTO THE DAYS WHEN YOU FEEL THAT DARKNESS SURROUNDS YOU AND WHEN YOU FEEL DESPAIR THEY CAN BRING YOU HOPE AND ENCOURAGEMENT!

AS AN "OUTSIDER" LOOKING IN... PERHAPS WS CHILDREN FROM YEARS PAST HAVE BEEN SHARING THEIR STORIES "LIKE THE ONES IN THE VIDEOS", HOPING AND PRAYING FOR THE GENERATIONS TO COME AFTER THEM THAT THEY WILL HAVE WARRIOR MOMMIES TO BRING NEW LIGHT TO WS AND TO PLOW A NEW ROAD OF HOPE AND THAT THINGS WILL BE BETTER, EASIER AND SIMPLER FOR THE CHILDREN OF THE FUTURE... LIKE FOR ERIK AND HIS NEW FRIENDS... DAVEN, CLARE, BRADY, TATUM AND SZABI AND ALL THE OTHER CHILDREN OUT THERE! I THINK OF YOU AS A WARRIOR FIGHTING FOR ERIK AND HIS FUTURE! PERHAPS YOU ARE AN ANSWER TO SOMEONES PRAYER!

NANCE... YOU CAN MAKE IT THROUGH THE RAIN AND IF YOU EVER NEED AN UMBRELLA... I AM ALWAYS HERE!

I LOVE YOU GIRL!!
DAWNITA

9:00 PM  
Anonymous Anonymous said...

Nancy - You do not know me, but I have a niece with WS. I am also the mother of 3 (grown) "normal" kids. I understand your concerns about the future and how the world 'sees' your beautiful son. However, please do not think that everyone blessed to have only "normal" kids are cruel. We are all different, and noone is perfect. So, please cherish every day with that beautiful boy, and know that God will watch over you and he, too. Love, an aunt

10:42 PM  
Blogger Teresa & Shawn said...

I missed a couple days of reading and wow. Nancy, first of all, I think you are very brave to watch those videos. I know you were dreading it. I had seen those videos almost a year ago now and have met other "kids", ranging in all ages from my sweet Clare to an 80-year old woman, with WS. It's not easy coming face-to-face with the reality of what the future may hold. It's much nicer to live in your bubble sometimes. But unfortunately THAT's not reality.

There is pain and suffering and heartache and struggle. I know there is. And my heart cries for Clare to know she may face all this in the future. But there is hope, too. There is always hope. Don't ever forget that. Our children are a blessing and a gift. And, of course, we would make life easier for them - we are their mothers and that's what we do. But I believe we ARE making life easier for them by giving them the greatest foundation of love and support. And I know you and Brian are doing that for Erik. Just look at those huge smiles in his photos!

6:28 PM  
Anonymous Sally Reynolds said...

When I was read my daughers bolg I often check in with all of you to see what is going on. I just finished reading Combat. You been blessed with the ability to share your your thoughts in such an honest way that you give permission for others to voice what is in their hearts. Thank you so much.
Lisa R's Mom

8:17 AM  

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