Erik Quinn: The Heart of a Family: Voices Carry

Tuesday, April 17, 2007

Voices Carry

Hush hush
keep it down now
voices carry


-- "Voices Carry" Till Tuesday

Whatever this phase is I'm going through seems to involve a great deal of feeling geographically and emotionally isolated. I have definitely felt worse in my life, but this type of feeling seems to have no end these days. Today I allowed myself to vent in parent group about this new feeling of isolation. I talked about how I don't trust the medical professionals here, most of which have quite obviously never had a patient with Williams. I talked of how brutal having a special needs child is on a marriage. The strikingly loquacious speech pathologist was scheduled to give her monthly lesson today on promoting communication and language in our children but allowed the group to vent and talk for most of the session. Sometimes it seems the people who lead these sessions vent more about their own lives than we do sometimes, and I often find it unprofessional and highly annoying. There are mothers there with children with a variety of conditions, including Down syndrome, mild to severe learning disabilities, fetal alcohol/drug syndrome, and autism. We are all beginning long journeys with our children, and I suppose even if every mother had a kid with Williams, we would handle things very differently. However, there is no doubt that I get something from other WS mothers that I can't get anywhere else on the face of this planet. The people who are supposed to help me the most are by far the least helpful, and the people who are new at this are the most reassuring of them all. I only halfway regretted voicing my opinions this time. Part of why I feel so alone is that every time I try to let some of my feelings out, I'm generally extremely sorry I did and curse myself afterwards all the way to the car (stupid, stupid, stupid). Frankly, the response I get usually just makes me angry and sullen. I usually promise myself I will never discuss my feelings again except here in this blog. The only thing that made me start chewing my fingers until they bled to suppress any blossoming rage was that it was explained to me by the speech pathologist that I need to fight for my child because nobody else in the medical community will. No shit, Sherlock. So fighting for my child will magically guarantee more qualified, competent medical professionals will appear in this community? Color me unreasonable for being frustrated nobody seems to care or for wishing there was a Williams clinic within 1000 miles.

I think there is quite a bit of fight in me, thank you.

I was asked to hold an infant for a few minutes during the session while his mother temporarily left the room. Again, nothing in my blackened heart budged. As my biological clock begins to run out of time, I feel absolutely nothing at all. I actually felt guilty for a few seconds about feeling nothing but then found myself wondering if it was socially acceptable to hit the Taco Bell drive-through at that time of the morning. I couldn't help it. After all, this is the same baby who smells a little like a gordita supreme to me.

Overall, my blueness has improved. In part this is because I called the cardiology office, and the woman who answered the phone actually remembered Erik from last year, even though his cardiologist has moved into a different facility across the street (one of my fears was that he was lost to followup). They asked if they could call me back, and I agreed. I was soon informed that since Erik is doing so incredibly well, he would not need another echocardiogram until October when he turns 3. I very politely explained that it is because he is doing so well I have become more of a paranoid freak show than the mothers who are go in with their children every three to six months. The nurse very appropriately and genuinely laughed with me and said I was completely welcome to come in and get the study early to help alleviate any worries, but I declined and said I put all of my faith in this particular doctor and that we would see them in October. Wow. I'm so glad I called. For once I did not feel like I had been swept under the rug by the medical community. If only all of his medical care was of that same quality.

Tomorrow a phlebotomist comes to the house to take our blood and urine for our new life insurance policies. This means I'll go easy on the gorditas, margaritas, and cigars today.

After that, I'm not promising anyone a dang thing.

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13 Comments:

Blogger Every minute counts.... said...

I really wish that we lived closer right now! I am sorry that you are going through these emotions. They are all too familiar to me. Let me know what region n the WSA you live in, I will see what I can do if anything to help. There has GOT to be someone closer to you.I know that your mood will improve after Sophie's run. You will find the energy to carry on with the fight.
Noel

12:31 PM  
Blogger Lizard Eater said...

No advice, of course, just an ...

"mmmm. Gorditas and margaritas."

Hugs. The fact that the bitterness and frustration don't just eat you up shows what an amazing mama you are.

Me, I have my days.

2:38 PM  
Blogger Kerry said...

First, HAHAHAHA about the Taco Bell bit. How do you make me laugh in the middle of such a serious post??? :)

Secondly, to be quite frank, I don't know what I would do if I didn't live near Children's Hospital and all their expertise. Tom and I had talked about moving out of New England in the past and now with Brady, that has flown right out the window. I do know that it has probably made me lazy, knowing the WS professionals are close by and can combat Brady's problems without me second guessing their decisions. I don't think that's a good thing because it will leave me in the dark more or less.

Having said all that, I have every confidence in you and your abilities to get the best and know what's best for your child. It's frustrating, I know. (I often ask Tom why can't they just put the price tag on the car that's for sale instead of making you haggle and work for the sale price?) Why does it all have to be so difficult? You are an incredibly smart woman and it never crossed my mind that Erik would be at a disadvantage. I think it's because he has done so well.

Thirdly, don;t ever second guess talking about your feelings. It does you a world of good, plus without even realizing it, you are probably helping someone else too. (That is the selfish part of me talking - you always help me :) )

I am so psyched about your echo being pushed back - they don't do that unless they are sure about it, so that is AWESOME!!!

BTW, it's my birthday so I DEMAND you have a drink tonight to celebrate! I'll be having mine too early for you (I'm Eastern Standard Time)at least I think it will be too early... I love you!

2:55 PM  
Blogger Kim, Grandma to Ava,ws said...

One word: MASSAGE.

Or alcohol. I think both would work.

Feel better, Nancy.

6:43 PM  
Blogger Nancy said...

Noel -- I'm going to be a little more visible through WSA (we are Northwest, but everybody seems to be in Washington and I'm far from there) and see what happens. I just found a profile I forgot to fill out, so I'm probably not even listed. You are the best.

LE -- You are all that and a bag of Kettle Chips. Thank you for your friendship.

Kerry -- Thank you, thank you, thank you. And HBTY! It's on my calendar now. I had a 4-oz glass of red wine in your honor. Maybe tomorrow after my blood test I'll toast you again.

Kim -- I am kicking myself for not visiting the hut on the beach in Hawaii in December where a tiny lady with very strong hands worked her magic. And the rum runners were only a few yards away. Dangit! I'll keep my eyes open for a licensed masseuse who can come to me perhaps and save me some time. Good idea!

8:36 PM  
Anonymous Shaena said...

I have nothing intelligent to say nor any profound advice to give. I am not a WS Mom, so I can't begin to understand what you go through on a daily basis, but as your friend of nearly two decades I just want you to know that I am here for you and the cigars, alcohol and Taco Bell at any given time.

9:50 PM  
Blogger kathi said...

I can't begin to imagine what you're feeling day to day, but I'm glad that you're able to share and vent here.
I think that when you try to fake what you're feeling to make it more 'nice' than you're actually feeling, it just makes matters worse for you on the inside. So you don't march to a biological clock, why should you? And so that baby made you consider taco bell in the morning...(okay, that's got some levels to it, lol).
What's important is that you're dealing with it instead of repressing it and it's what makes you better rather than bitter.

Oh, I loved the video by the verve...I've watched it a dozen times and I've downloaded it. Perfect for how you're feeling and how we all feel time to time. Perfect for me, right now, right here. Thanks for it.

5:26 AM  
Blogger Amy K said...

Nancy,
Trust in yourself... you are the greatest medical advocate for your child and you are doing a super job. Continue to seek balance and find those you can trust. A trusted friend told me to take a shower (in place of a beer) when feeling overwhelmed and scared, it works wonders. Wow, I would hate to see your water bill after a month of shower therapy.
XOXO and you can call me anytime!
Amy

6:07 AM  
Blogger Lisa said...

No brilliant words today...I wish I could make it better...

HUGS

10:53 AM  
Anonymous Aspen said...

I have nothing profound to say nothing that will take your pain away nothing that will make you smile. I can only say that I love you and am thinking of you. Virtual hugs and kisses are being sent in your direction!

1:47 PM  
Blogger Rosemarie said...

Sometimes...as I just read over the weekend...we get weary from the sameness in our lives. How true is that?

I hope that shortly for you this fog will lift and you'll see the sun on the horizon.

Hey, it's good to be back in your space again. ;)

PS About having a closer facility for Erik. It’s seems “you” could be the one to get that to happen. Be part of the solution to the problem!

7:50 PM  
Blogger Lisa R said...

WHAT NO CIGARS are you going ot make it????? And to own a margertta mechine and no use it is a CRIM...do not make me come there to kick some ass!!!!

Screw you adult theropy class sit in the car on your cell with me during that time I am sure it would be way more entertaining...LOL

I think that being Geographically changelled would suck...I ma in a good area but was so feeling that remembers... I hope you can resolve this soon because it really did make all the differnece in the world. Sure I saw a million Docs and I am sure most think that I am a bit crazy but who care I am now confident with my daughters care givers...it really makes a big difference...

I did come up with a new life rule I though you may like...Happy Hour starts at 5pm EST no matter where you are :)

9:11 AM  
Blogger Teresa & Shawn said...

I've been thinking of you. I do consider us lucky that we live so close to Boston and all it has to offer. At the same time, it's still isolating that WS is so rare, there is no one else around me who truly understands. (Okay, Kerry does, but we have to get our butts in gear and get together!)

10:23 AM  

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