Goalie

Haley reaching high to block a goal

Why yes, our lives do revolve around our daughter's soccer games/practices/tournaments. As I think back to when Mikayla was 5 and we signed her up for the local rec. soccer league, never in my wildest dreams would I have imagined that our life would become a constant to and fro from soccer practice to soccer games to home. And not just for one girl but for two. They both have been blessed with athleticism that allows them to play soccer at a level that is very competetive. They have tried other sports and have done well with them too, but soccer is the sport they both seem to love. So we indulge them and cart them to practice, travel around the state on weekends for games and tournaments, juggle our own schedules to fit in these games and within this crazy, hectic schedule we find time to be a family. I don't know if either one will go on to play soccer, or any other sport, in college. So why do we sacrifice all the time and money? Simple, it keeps them busy and out of trouble. And if this is the price I have to pay to keep my girls happy, healthy, and free from all the pressures they might face if they had idle time then so be it.

Jilly has shown some leaning toward being athletically inclined too. She loves to dribble the ball around while her sisters are playing. Russ and I are both active too and played sports in high school and college. We have jokingly told the girls they must play sports, no girlie stuff like cheerleading (although they both know that I was a cheerleader my senior year as a form of protest to my basketball coach). Jilly's PC has already told us that there will be no soccer in Jilly's future. No contact sports that might injure her heart, no long distant running, no gymnastics. Her suggestion is golf, low impact sports, maybe some mellow dancing. But we should keep her active, keep her aerobically fit.

So as we enter this next phase on our heart journey, how do we do that? I know, I know....she'll pace herself, she'll learn to compensate for her weak heart, stop when she gets tired. But I wonder how to encourage her without pushing her, push her to be active without putting her at risk. I don't want her to feel that she can only play golf, or only walk for exercise, or only dance half-heartedly if she feels like boogying on down. It seems like a fine line between encouraging her to be "normal" and worrying about her doing too much, pushing her heart too far. And when she wants to keep up with her sisters? When she wants to be like them and play soccer - how do I explain to her that she can't. Or maybe I don't use the word can't. Maybe I let her and see how she does. But the PC said no soccer. See the dilemma - letting her be "normal" but setting limits on what she can do according to the recommendations of her doctor.

I guess it really lies with her. As she gets older letting her do things that obviously do not put her at risk. And letting her listen to her body, become attuned to what she physically can and can not do - and letting her navigate her own unchartered territory. And leading me instead of me feeling as though I need to lead her.

Happy Thanksgiving

Happy Thanksgiving from San Diego! Here I sit in a hotel by myself in San Diego. Ok, I'm not by myself, Mikayla is with me, but she and her soccer teammates are off doing whatever it is 14 year old girls do. We drove down here today for a soccer tournament and Russ and the other girls stayed at home. Russ' high school football team that he coaches made the play-offs so he needed to be home to do the coach thing. Haley and Jilly stayed with him. So I just had myself my thanksgiving pumpkin pie by myself and am going to curl up with my book and an episode of Grey's Anatomy and call it a night. And I will never drive to Southern CA. on Thanksgiving again - these people are crazy down here.

I hope everyone had a quiet and uneventful Thanksgiving. I for one had 9 hours to think of all the things I am thankful for - there are many - but mostly I am just thankful for every day that I am allowed to wake up to my wonderful family. Everything else is just gravy.......or maybe whip cream....speaking of whip cream I think I'll go have another piece of pie.

She's 14!

Holy wow! Tomorrow my baby will be 14!

Elephants

Allow me to vent.

I was reading an article in a magazine yesterday about a woman who received a heart transplant at 25. She wrote about how she pretended to be better although the majority of the time she felt like crap. She felt that she traded one set of problems for another set. She pretended to be better for those around her. Because they wanted to believe that she was better and when she complained or led them to believe she felt worse at times, they didn't want to hear that. Her circle of support wanted to believe since she didn't die, wasn't in the hospital, didn't "look" like a sick person then everything was fine. She should be happy, should be grateful. So she kept her mouth shut and allowed them to live in their little happy world, believing what they wanted to make themselves feel better.

I can't do that. If there is an elephant sitting in the middle of the room I can't walk around it and pretend that it is not there. When people in our "circle of support" fall away because they want to pretend that everything is fine to make themselves feel better, I can't go along with the charade. Sorry. Don't blame us. Don't stay away because now you feel guilty. Just asking "how is Jilly" goes a long way. I'm not going to bore you with all of the little details. I'm not going to throw her reality in your face. I'll probably tell you that now, today, right this very minute, she is doing fantastic. But hey, thanks for asking.

And ask, people do. Random people, co-workers, neighbors, sometimes even strangers, people that I would not expect to ask because they are not involved in our lives on an everyday basis. And it's ok if they don't ask, but it feels nice when they do. And it hurts when the people who should be asking aren't.

Life goes on. I understand that. Our life has gone on. It's a good life. I don't dwell on the negatives. But I haven't gotten over it. I haven't gotten over the fact that Jillian has major heart defects. I haven't gotten over the fact that she has had to have 3 open heart surgeries, takes medicines ever day, has to see a cardiologist the rest of her life, may have more surgeries in the future, that I may not see her graduate, walk down the aisle, produce grandchildren. I'm not over it. I'm not going to monopolize every conversation I have with someone about it. I'm not going to be depressed about it and make our lives miserable. But I feel sometimes that people think my window of opportunity for self pity is closed - she's healed - she looks great - she's happy - now shut the hell up. If only it were that easy.

So it's especially maddening when "supporters", those that are supposed to be intertwined in our lives on a whole other level, have moved on with their lives, seemingly forgetful of this new life experience we are adjusting to, dance around the elephant in the middle of the room and expect us to do the same. But we can't. And we won't.

Thanks for listening.

And just stopping by here lets me know you are asking "how's Jilly?" She's great, thanks for asking.

A Letter

Someone sent me the following essay. The reason I posted it here is that it really struck a chord with me. I still grapple, even 3 years later, with why Jilly? How did this happen to us? I secretly wished for another baby girl, maybe I should have just wished for a healthy baby. I guess reading this today was especially poignant when just this morning, Jilly woke up, rubbed the back of my arm and said "Mommy, never leave me". I hugged her tight, a tear slipped out and I thought "No Jilly, never leave ME".

Some Mothers Get Babies with Something More
Written by: Lori Borgman

My Friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at sometime or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated wtih trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diets and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one - saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes".

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubborness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

Happy Fall

My favorite time of year



And I added this because I just love watching Haley ride her horse

Halloween

Halloween is a pretty mellow affair in our neck of the woods. We don't have trick-or-treaters since we live in a rural community. So Jilly and I hung out with the pumpkins. She kept a close eye out for any goblins and ghosts. The other girls were invited to friends' houses and by the time I picked them up they had already changed out of their costumes so no pictures of their scary selves. Jilly did hit up a house or two when we picked up Haley and used her charms to get some candy. She was probably the cutest cat anyone has ever seen!

Not sure what the basketball was about but she would not put it down to let me take her picture.