Reflections

It's Friday night. Haley and Jillian are asleep. My husband just called and Mikayla just texted me. I continue to be a football widow for one more week. The high school football team that Russ coaches won the 2nd round of play-offs tonight. One more week of football. Haley, Jilly and I sat this one out at home - too cold for these fans. 

I put up the Christmas tree today. So I sit here in the light of the tree - thinking ahead to some things I have to do this next week. Sign Jillian up for Kindergarden. Cardiologist visit. And now a championship football game to sit through. 

And a new year looms on the horizon. So many things to be thankful for. So many good things to look forward too. 

I know I have mentioned before that I try and define my use of this blog as a vehicle to educate others about life with Jilly. Life with a heart defect. Life after the three-staged surgery. Life as it is now after hospital stays, operations - my thoughts, reflections, hopes, frustrations. Not so much a daily chronicle of the Sommers - but more of a chronicle on how one navigates through life with a child that has a life threatening disease, the pain, the emotions, the doubts. But also to chronicle the happy, the fun, the brightness and to give some hope through these chronicles. I know I have also mentioned that what I am doing here is in response to something I couldn't find when Jilly was first born. 

Oh sure, do a google search and a bunch of stuff comes up for the three staged surgery. Lots of miserable, sad, discouraging stuff. And hardly anything came up for her particular set of defects, Tausig-Bing Anamoly - not very common. What I wanted was the stuff from a parents perspective. The feelings, the actions, the emotions, the outcomes. 

Blogs weren't in abundance 4 1/2 years ago. I can only remember coming across a handful. But then again I am computer challenged and technology is not my thing - so maybe I just didn't know how to look for what it was I was searching for. 

Do a search now and tons of blogs are out there on heart kids. It is truly amazing the network of families that has developed through the blogosphere. 

So it is amazing to me that people stumble upon Jilly's blog. I mean, it's what I want, for some random person, sitting alone at the computer. Dealing with a new diagnosis. Researching information. Looking for answers. Looking for hope. To find Jilly.

People have found her. And have found hope. Even some inspiration. 

A mom of a former student of mine emailed me the other day. Her daughter had graduated and went on to college. Her mom asked me a while back if I was ok with her daughter using Jilly's story and her blog for a college assignment. I said absolutely. The mom wanted me to know that her daughter recieved a perfect score on her assignment. She wanted me to know that Jilly's story inspired her daughter to write a perfect paper. That it inspired her to be thankful for her family. That Jilly touched her and her family in a profound way. 

And I thought, wow, more people are being educated on CHDs and that is a great thing. 

I have recently recieved a few emails from CHD moms who don't blog but who find a certain kind of comfort from Jilly's story. Have been quietly following her journey but have never commented. And I find comfort knowing they are out there, sharing the road with me. 

But the greatest.....compliment I guess you would call it........was from Johnny's dad, Dave - whose own story inspires me more than he knows. He recently left me a comment a few posts back that reduced me to a tearful mess. For many reasons. His gift with words being one. But that he expressed to me the same feelings that I was feeling 4 1/2 years ago, sitting alone in front of a computer screen. Feeling more alone than I have ever felt before in my entire lifetime. And he had found some hope and inspiration through Jilly's story.

Dave wrote (and I have Dave's permissions to share his gift of words) "On January 17, 2008, an ultrasound revealed that our 26 week old unborn son had a congenital heart defect. That night, after our daughter was asleep, I was on the Internet, trying to find out as much as I could about what we were facing. One particular random search on google, I can’t remember the word I was searching, led me to your blog, and for the first time I met Jillian. My spirits were lifted. Here was the story of this amazing and beautiful little girl, battling her way through a 3-stage heart surgery, similar to what Johnny was facing. There was hope. Your words conveyed to me that it would not be easy. Actually, it sounded as difficult as anything a family could go through. But at the same time, there was hope."

He wrote alot more. More that really, truly touched me. But that passage there brought the tears and the feelings right to the surface. I can remember so vividly those first few nights after Jilly was born. Nights sitting in front of the computer, tears clouding my eyes, just looking to find one person who could tell me it was going to be ok. Whether it was going to be or not. I just wanted some reassurance. See for myself a child, an older kid, who had gone through the surgeries and was living a "normal" life. For some reason, those nights have affected me so much. I think it was just the deep despair that I felt. That I was the only one going through this horrible nightmare. The nurses couldn't help. My friends and family couldn't help. And at the time, most of the other families at the hospital couldn't help because they were just starting on the journey as well. 

And I felt so alone. 

I don't anymore. 

I guess what this long, rambling post is trying to say is that I am humbled by Jillian's existence. I am grateful that her story has helped others. 

Jilly amazes me. Jilly inspires me.

This blog. Jilly's story. They are so not about me. 

Jilly's story has meaning. I am so glad that I am able to share it. 

Thankful

There's this amazing video floating around out there. This singer, Mark O'Shea, had heart surgery as a baby. He made a video for Vanderbilt Children's Hospital. The song is called Look at You Know.

If I could figure out how to upload video from YouTube I would - but sadly, I can't seem to do it right.

So.......... watch the video

And then I have my own THEN and NOW to share.....................

THEN....

LOOK AT HER NOW.................

Shorty, It's your Birthday

My beautiful first born Mikayla, turned 15 yesterday................heavy sigh............. She's just so gorgeous and wonderful and honest and real and down to earth and trusting and childlike and womanly and intelligent and confused and loving...and did I say beautiful?
This is basically what she likes to do......shop, shop, shop and spend time with her best friends
I love this teenager

Wow!

The advancements in the field of cardiology - specifically for pediatrics - is truly amazing.

"As she was being released Wednesday from a Miami hospital, the shy teen seemed in awe of what she's endured. Since July, she's had two heart transplants and survived with artificial heart pumps — but no heart — for four months between the transplants"

Read the rest of the article here:
http://news.yahoo.com/s/ap/20081119/ap_on_he_me/med_artificial_heart#full

Waiting

It's Saturday night. It's getting late. I'm an old married woman, I'm tired and want to go to sleep. But I'm waiting up because I need to go pick up Mikayla from a "sweet sixteen" party at midnight. 

So I'm playing on the computer trying to stay awake. And thinking about Jilly. She's asleep. Has a slight fever. Says her throat hurts. Hopefully it's just a quick little illness. 

But I've been thinking about a conversation Jilly and I continue to have. It's a conversation that keeps occuring, she's intent on having her way, and it's one of those minefields that I'll have to keep navigating through as long as she is alive.

Several months ago while at one of Mikayla's soccer games she saw a bunch of tiny 5 year old girls playing a soccer game. She wanted to go watch that game instead. So we stopped for a few minutes to watch. She asked me how old those little girls were. I told her they were 5. She turned to me with a gleam in her eye and said "When I am 5 I want a birthday party at Chuckie Cheese's, I'll go to kindergarden and I want to play soccer ball like those little girls." 

We moved  on. I probably said "ok". Didn't give it another thought. 

Since then Jilly says on almost a daily basis: "When I turn 5 I want a birthday party at Chuckie Cheese's, I'll go to kindergarden and I want to play little girl soccer ball."

She stopped one day because she sensed that I was blowing her off and not really taking her statement seriously. 

"Mom?" 

"yes, Jilly"

"Can I play soccer ball like those little girls?"

"yes, Jilly you play soccer ball all the time with me"

"no mom. Can I play soccer ball like those little girls were playing soccer ball?"

Well, technically....no you can't. But I didn't say that. At her last cardiology appointment Haley was with us. Her and Dr. H struck up a conversation and the topic of soccer came up. Haley told her about her soccer travels. And Jilly said something to the extent of when she grows up she wants to play soccer ball like her sisters. Which then prompted a conversation between Dr. H and me. She told me that no, Jilly won't be able to play competetive soccer like her sister's do. Won't be able to keep up and would tax her heart tooo much. I asked about the rec soccer ball that the little kids play. She was worried about that. She said unless I wanted to be the coach and monitor Jilly closely. Otherwise she would be afraid of overzealous coaches not having the awareness of her limitations pushing her too much. Sure Jilly will obviously monitor herself, but the possible risk to her heart would be too much in her opinion.

I am so ok with that. I actually look forward to quiet Saturdays not rushing to one soccer game or another. She can golf, go fishing with her dad, learn to play the piano, become a much better cook than her mom, paint...the possibilities are endless. 

Except the possibilities having exceptions.

So Jilly brought the subject up again. Like really mom, take me seriously. She's too young to understand the why's. Why she can't keep up, why she gets tired when we play extreme frisbee outside and has to rest. My thought with her is to encourage her to do whatever she wants to do, not put limitations on her, let her reach for the stars. But the reality is there are limitations. There are things that she can not do. There are activities that I will have to tell her no. No, you can't do that. 

Jilly is starting to have some knowledge that she has a "special" heart. When she asks we have simple conversations. Why she had surgeries. Why she has a "zipper". She'll tell you she has a "broken heart". She obviously doesn't understand all of that. 

I don't want to keep blowing her off. She's perceptive. She wants a YES! You can do it! We'll sign you up tomorrow! But I can't lie to her. 

I am sure that I could sign her up for one year. Work with the coach to make sure she's not overworked. But I can't. I don't think my heart could handle it. I know with soccer, at any age, there's a lot of running. Is that fair to her? To have her play knowing that she'll have to sit out a lot, not play as much as the other kids, not be able to keep up. 

I know it doesn't need some big explanation that she won't understand. It's just another bridge I am crossing in this new journey with Jilly. I'm probably putting way too much thought into it. It's just the excitement that comes from her when she sees these little girls playing soccer. It's hard to know that at some point I have to tell her that she can't. That I have to cross this new bridge.

The bridge of how to tell my daughter she can't without breaking her spirit.

Long Awaited Pictures

Here are some recent pics of Jilly

Jilly painted a picture of a heart for me

Jilly didn't want to cut up her pumpkin so she painted instead, her sisters were only allowed to watch

Here are Jilly and Haley getting ready to go trick or treating - Jilly is Dorothy and Haley is an Olympian soccer player - complete with all of her soccer medals

And here is the most beautiful Dorothy ever - with some leftover spagettios on her face

Jilly was doing some art work yesterday and was very proud of her drawing - I was too

Honesty

As you can see I am playing around with the blog. I'm computer challenged (hence no new pictures) so it might take me awhile to figure out what I am doing.

One of my students where I work, who is a fabulous senior, started teaching at the gym where Jilly takes gymnastics. He saw me on Monday and waved. He worked a little bit with Jilly.

Yesterday I was sitting out on the quad at my school soaking up the sunshine, talking to students. He stopped to say hello and we chatted about his job at the gym. He asked if my daughter was the one in the gold leotard. I said no, she was in the black and white leopard one. And he very innocently said, oh the one whose leg and arm movements are so stiff. I said yeah, that's the one. And he very innocently asked me - why does she move like that? So I explained why she moves like that to him. After my explanation he sheepishly said - yeah, I guess having all those surgeries and stuff would make me move like that too. I told him that I was glad he asked.

I am glad. I am glad he is young enough to just plow ahead and ask questions. I know there are many people on a regular basis that we come into contact with who want to ask questions. Whether it be to ask why she moves so tentatively, why she can't keep up with other kids or to ask about the obvious scar. I'm ok with that. I would rather the questions than the glances, the stares.

Honesty goes a long way. I have resisted in being honest regarding some very strong emotions I have been feeling lately regarding mankind and the things my kids have witnessed lately and the conversations I have had to have with them regarding religion and politics. Discussions that I am glad we are having but angry in the way topics have been presented to them. Mine is a household that welcomes many views and allows my kids to formulate their own thoughts and opinions. So I am continuing to digest these feelings, let the dust settle. My kids are still young enough that I hope they continue to plow ahead, ask questions and not be swayed by fear and hate. There's already too much of that in the world.

Cool

My sister works at Comcast. They organized a toiletry drive for UCSF. She sent me the following this morning. It is personal for me since there were many times during our long 3 month stay at UCSF that I needed shampoo or toothpast or deodarant. What a very cool thing:


Comcast Donates 30,000 Toiletry Units to
UCSF Children’s Hospital

What started out as a competitive
contest between Comcast California
offices- turned out to be a record
breaking donation to University of
San Francisco’s Children Hospital.
Comcast California’s UCSF Children’s Hospital toiletry drive resulted in a donation of 30,000 units of items such as shampoo,soap, toothbrushes and other amenities to help families in need.

Comcasters from Sacramento, South Valley, Concord, Livermore and Morgan Hill participated in the contest and many who
donated came together on September 24th before sunrise to load Comcast vehicles to transport our contribution to the “Children’s Hospital by the sea”.

Founded in 1992, UCSF Children’s Hospital cares for children in territories from California to Oregon.

Operating on a tight budget allocated by the state, UCSF Children’s Hospital does not have funding to provide such amenities to families who have unexpectedly had to stay with their ill child. Comcast’s donation was the first time in UCSF Children’s Hospital history where they received a donation of toiletry items in this magnitude.

Slacker

I'm sorry - I'm a slacker. Can't get Russ to download my pictures (Hi honey!)
Maybe tonight.

Halloween was fun. Jilly, Haley and I crashed a neighborhood to trick or treat. Jilly was so cute. This is really the first Halloween I have taken her out. She got tired after about 45 minutes of walking though. That's ok. I'm not big on the candy. We got home just as it started raining.

Things are mellow. Enjoying the change in weather. I can't believe it's November already. I'll be glad when the election is over tomorrow because I'm really tired of the people on the street corners with their signs. Sad display of acceptance of all people that this country was built on. But only one more day of the madness.

Jilly is doing great. She's doing so many funny things lately. She's fiesty, opinionated, loving, gentle.....I just love that little girl.

The older ones are doing great as well. Haley has straight A's and still loves middle school. Mikayla is Mikayla - a teenager. But I love her.

All is well here. I will try again tonight to get pictures up.