Monday, March 26, 2012

I love you...music to our ears

F's AT/AAC team was here a week ago. They updated his maestro for him. He had wanted some comments for family added to it. One being "I love you".

He's been using the maestro and learning the new format. We've got it set up so that he has a personal speaker for his prompts and then the loud speaker for us. This cuts down in the confusion about what he's saying.

While sitting in the family room with us. He was chatting away and more or less exploring the new comments and then finally it came R hears's "I love you". He checked f's screen to see what it was he said, but this comment didn't show on the screen (an adjustment is necessary). Upon being asked what he said within a few
minutes he repeated "I love you". We were overjoyed. It has taken f almost 19 years to have the ability to say I love you to us. His smile said it all. Our hearts were so full at that moment.

I was telling his speech therapist about it and he beamed from ear to ear with pride. This is a milestone we have all waited a very long time for.


Wednesday, March 21, 2012

To Leave or Not Leave When My Boy is Sick :(

Last Friday upon my return from swim practice, I walked in took one look at my boy and I knew he was getting sick.  Cough, cough, cough was all I heard him do that day... although not unusual for the spring season the amount of coughing was.  I asked if he felt like he was getting sick and a resounding "yes" response came from him.  I was torn.

The next day I was scheduled to get C up bright and early to be not he road for an out of town swim meet.  We were only traveling an hour away from home.  I knew I could return if needed.  I knew F would be in R's care (his dad)... but the pit in my stomach was there and it was all I could do to think about leaving.  R assured me he would be attentive and on the respiratory care.  R does a good job with almost everything for F, but there are times when he gets distracted or doesn't notice the little signs and signals F's been giving him that say "I need something" until it's too late.  And let's face it, it's a mom thing.

My anxiety was at an all new level after having F wake me up at 3:25 in the morning in full respiratory distress and fever.  He was panting.  Fever 101.6 axillary.  Respirations to many to count.  We have an O2 sat monitor he was at 89 and his HR was 150!!! I was freaking.  I immediately started albuteral. Stripped him down to a t-shirt.  Wiped him down with a cool cloth.  Within just a few minutes of the albuteral his numbers started to rise an fall.  By it's completion he was up to 94/95 and his heart rate was at 132.  I gave him a cup of water and some tylenol.  I got him calm and comfortable and went back to bed by 4:20 or so.  The alarm was set for 5 am!

R thankfully awoke at the early hour upon hearing about the crisis during the night.  He packed our ice chest and filled our thermoses.  He was already on my computer printing a med list.  Had it planned to call on-call doctor and get F to urgent care.  We both knew a prednisone burst would be necessary.  Much to my relief R was on it with a plan.  I was so torn to leave, but knew that R needed to be able to come through for us girls so that we could get away for the meet.  R also needed to show F that dad can come through and take care of business when it needs to be done.  The two of them have been bonding a lot while I'm gone with C at swim practice each night.  I think it's been good for the two guys to not only work on their communication, but for R to work on being a better partner and assistant to F.  It's been nice to see them grow closer.

But the truth is when F is sick... I HATE to be that far away from him. He's pretty stable with his health, but that asthma and respiratory piece combined can cause sudden crisis and I'd hate to not have my opportunity to be with him.  I know what a way to think the worst!  But most kids I've known like F didn't make it to adulthood they died in some state of respiratory illness or distress between 8 and 12.  I've... we've been so lucky to have F almost 19 years now.

To make a long story short... R handled the illness with flying colors.  He pulled night shift respiratory duty the night I was gone.  He did a really good job for F as his nurse/respiratory therapist this weekend.   I didn't worry too much while I was gone.  C and I enjoyed our weekend... only to return with colds ourselves. F hasn't quite returned to his baseline, but he'll get there.  How we all love that kid!

Wednesday, March 14, 2012

My Baby was Born with Cancer

It's come to that point where it's time to talk about Cienna, my first daughter.  The little sweet girl who came into our lives at just the right time to give our lives some new perspective.  I can remember being quite focused on F and all of his issues, baggage, complications... call it whatever you like he wasn't a normal healthy baby and I was in constant crisis mode with him.  Then this sweet baby girl came into our lives and we were introduced to a couple of things.  The first, what it was like to have a baby that had normal motor function.  The second, babies can be born with cancer.  Yes, born with cancer.

Cienna was born on January 18, 1995.  I remember the morning very well.  R had a doctor's appointment prior to the scheduled Cesarean.  As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery.  She weighed 8 pounds 5 ounces.  She was so beautiful.

We took her home and everything seemed to be going well.  We adjusted to our new family.  My mother-in-law stayed to help me with F because I was unable to lift him.  I can remember this day as if it was yesterday.  My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw.  In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.

Monday morning I call the pediatricians office.  I made an appointment for the following day.  The next day is Valentines Day.  R and I take her to the pediatrician and I show her exactly what my mother-in-law saw.  Cienna's red reflex was normal, but the eye had that reflective glow.  Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career."  We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.

I can remember going to dinner and a movie with R that night.  I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning.  I just remember neither of us could or would be prepared to deal with what was to come.

The phone rang at about 9 am.  It was the ophthalmologist's office.  They were calling to find out how soon we could get Cienna into the office.  You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue.  R and I arrive at the appointment and we wait and wait.  They are literally squeezing us in.  The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more.  Eventually, we've been there long enough that R needs to leave for work.  Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE.  Cienna was crying and crying.  It was very unpleasant.  After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes.  The right eye's tumor is very large.  I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What?  My head is spinning.  I'm not really sure I'm grasping the situation at this moment.

I call R and his mom.  R leaves work early or his mom comes to get us.  I can't really remember.  We head to the local children's hospital for the MRI.  We run into my favorite doctor, Dr. Hutch.  F's neurologist.  He is shocked to see us.  We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results.  Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY!  We are told she will call us later in the evening to tell us which hospital we are going to be referred to.  Our heads are spinning!

The phone finally rings.  We are told that arrangements have been made with the Dr. in Los Angeles.  We need to leave the next morning.  It's Thursday.  The surgery is scheduled for Friday.  We are in shock.

We get up and leave the house as early as possible.  We arrive with the MRI films and we are waiting in the eye clinic.  The doctor comes in and tells us the procedure to remove the eye is very simple.  All aspects are covered and the recovery process.  Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY.  R and I look right at each other.

The room is spinning.  "What?  Chemotherapy You say?"

Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment.  My head is spinning and my heart is broken into a million pieces once again.

Me "You mean this is cancer."

Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes.  She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.

I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer.  Cancer grew in that right eye all through her in-utero development.

**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will.  For now here is the link:

Retinoblastoma International

Sunday, March 11, 2012

Some Things are Better Left Unsaid

So I recently found out that a former friend of mine (note the word "former") has recently announced that she's expecting. I'm super excited for her. Being a mom has been the best job of my life. I've tried to stay connected with this friend here and there. She was my training partner for a year or two and we logged tons of miles on our feet and on our bikes. Spending that much time together you become pretty good friends.

When I started having to cut back on training because my kids needed me things began to fizzle. She dropped me so fast and pretty much stopped contacting me. I was fairly hurt by te fact that I was pretty disposable since I thought we were pretty good friends.

So this past couple of weeks we've been communicating via email. We had scheduled on the calendar a time to meet up for coffee or go to lunch. We confirmed the day before and te next day she kind of left me hanging. She wasn't feeling well only to find out later it was due to the morning sickness.ok I'll give her that, but not even a call or text message to cancel?

Recently we were talking about a half-marathon in an email conversation. I mention who I planned on running. I get a reply that states the friend I plan on running with is riding in the limo with them to the race. Ok, I'm not looking for an invite or anything,  but really she has to tell me she's doing something fun and fabulous with a group of people and drive home the fact that I'm not invited.  Was it to make me feel bad? Was it to point out that my life is isolating or I suck as a friend so no one wants to include me.

I can remember early in our friendship. The whining and crying over one of her now best friends and how that individual treated her. How they made her feel badly about herself. Clearly she doesn't recall what that feels like.  I think I'm completely over this friend.

Shamrockin Half-Marathon

I got myself up this morning to do my first official half-marathon since the Nike Women's half in 2010. This is the first race that I've done without a friend to drive or run with. I was supposed to run with a friend. But I could never find her. So I ran my own race.

I hooked up with the 2:10 pacer thinking that would be the appropriate easy pace for me. The virtual half I did in January was around that time. Of course, I had my dogs with me and I didn't taper. When I awoke this morning I had slight calf cramps and I had started my period. So that also lead me to believe the 2:10 goal would be good.

After the first mile and a half I decided I needed to ditch that 2:10 pace guy. That pace was too slow and since I never found my friend I might as well just leave all i had on the course. I put both headphones in and found a pace to settle into. I found a lady who was a good pace for me so I stuck with her until the last mile. She began pulling away at the last drink station and I just didn't have it in me to catch her.

I finished, according to my Garmin, at 2:02.66. My best half since 2008. I don't remember what I ran that year. My parkway half in the same year was 2:01 and my best half ever was 1:59. So not too shabby considering I rarely do speed work or run with a plan.

Signs held up along the way:

"Run like an angry Kenyan"
"Your running 13.1 because your only half crazy"
"Even if you walk it will still hurt"
"Forget everything you did before this point, you only have your best 10k to run"

I love spectators they really help keep you motivated.  The volunteers are so greatly appreciated too!

Saturday, March 10, 2012

The New Swim Cap

Changing swim teams is NEVER easy.  You build friendships among families and swimmers.  That's why I love swimming as a sport.  C has been swimming USA Swimming since she was eight years old.  During this time we've met some of the greatest families.  My very favorite thing about swimming is it's one of the few sports that you can spend an entire day, or two or three, with your child doing what they love to do.  Another great thing is if you are bored, they will always have a volunteer job for you.  Swimming needs a lot of support volunteers.

C just loves the water and USAS offered her the opportunity to swim longer distances and strokes that were her favorite.  We spent almost a year with our first USAS team.  Our current team would have been three years this July. After that much time with swim families they become just that swim families.  We encourage each other's swimmers.  We sit in the sun watching them swim back and forth.  We volunteer together.  We invest many hours in not only supporting our children, but also our teams.

When it came time to actually consider changing teams, it was hard... R was ready for C to leave the team in the fall and becoming more and more ready by the day.  C began being ready after the posters.  I was the holdout volunteer obligation, etc.  I ask many questions about their program.  At our last meet, the O mom and daughter came to see C and offer encouragement.  They gave C some really good advice.. and me to of course!

C is so upset by her performance she wants to quit.  Thankfully my friend was within reach she gave me some very wise words to share with her.  I had to wait until just the right moment to talk with her not only about her accountability for her performance, but what kind of a solution can she find for herself.  We arrive home quite deflated.  I start communicating with the new teams coaches.  We like the answers to our questions.  The ball is in motion...

As a parent you never want your child to rush into anything, especially if you have a child that is impulsive.  Kids like new things.  New things are bright and shiny.  New experiences always have a honeymoon period.  So you really want things to be right.  C had decided to wait until closer to the end of March, but I can see that she is clearly not doing well in her mental outlook on swim.  I finally ask the new coach point blank what are "your personal" recommendations in this specific situation.  I needed to know is it better to wait, come quickly, what? The coach gave me some really great advice and I took it.

C and I decided when she would go.  We contacted the coach and I took her Tuesday night. Not only did she see her two favorite senior swimmers from her old team.  One of them immediately jumped out of the water and gave her the biggest hug.  C's smile was a mile wide. She was in love the trial night..  She ended up swimming a practice with them.  C told me all of the things she loved about Coach C's style.  "She's strict.  She corrects you. She watches... closely." She went on to explain all the kids she met and how she new so many.  They were all very nice to her. The energy coming from this child was contagious.

I made her go back to her old team to swim a practice and tell her coach.  She didn't want to, but I made her. There were two reasons to go back.   The first, swim a practice and make sure she wasn't overly excited about the new one.  Second, she has to tell her coach and her team mates.  I had earlier in the day have her write a thank you card for Coach B. We went back and forth about when.  Should she before or after practice? I told her she could always come back if she changed her mind.  I am so glad I made her go..  Coach B was amazing to her.  He offered her encouragement and best wishes.  His actions made such a difference. He was mature and professional.  He couldn't have handled the situation any better.  I wish I could say the same for how the head coach handled the departure of some of the senior swimmers.

The last two practices with C's new coach have been nothing short of FUN!  She's having a great time.  She's working hard and she's focused on her goals. She wants to make Coach B proud when he sees her at the next meet.  She's confident and prideful again.  She's bubbly and energetic again.  We couldn't ask for a better result. But we still miss the days with Junior and our old team...


Tuesday, March 6, 2012

3 Bad Apples and 1 Queen Bee

Upon returning from swim practice this evening, I inquire with C about her evening.  She informed me there is no dry land practice again! The reason four of the girls arrive in jeans.  This is like showing up for PE in school without your PE clothes.  She then proceeds to describe and explain to me the conversation she has with one Queen Bee. Who in C's words "gets away with anything she wants!"

Dry land workouts are the swimmer's cross and strength training.  In my opinion, it helps prevent injuries.  Injuries, something that my daughter seems to get very easily this past year.  Perhaps it's merely coincidence or perhaps there is some stock to the fact that they are not as conditioned and strong as they used to be under the former coach.  This coach inspired those kids to work hard.  When they were not participating or showed poor team spirit he sent them home.  He would also tell the parents.  In his opinion, why should parents waste their hard earned money if their child isn't going to participate. This coach was fired suddenly last May or June by the club management.  We should have parted ways then, but we wanted to give the new coach a chance.

I had a discussion with the my daughter's coach  about what's going on at practice.  We spoke about dry land, my daughter's fear of injuries, her bad habits, lack of motivation, and other issues.  I was informed that she didn't participate well in dry land. The coach would have to stand in front of her to get her to do the exercises.  She will say it's because of injuries.  He also mentioned how swimmers in his group show up with cell phones and dressed inappropriately for this portion of the work outs. C and the other kids,  show up  dressed appropriately and ready to participate (even if C's participating halfheartedly or crappy she's ready).  Yet, workouts get cancelled because of this Queen Bee and her three bad apples that follow her.

The queen bee and her three friends... don't care.  Not only do they not care or respect the other swimmers, they obviously don't care about the program.  I'm really at  loss for words as to how this is acceptable behavior to be exhibited and modeled for the younger children who look up and aspire to be like the older  children.  Did I mention I pay money for my daughter to participate in this program?  Last I checked I wasn't paying money for four bratty 13-year old girls to run the program.

Let's talk about sportsmanship and team spirit.  There is NONE!  It's every swimmer for themselves.  There's no cheering for anyone outside your clique.  It's acceptable to write  inappropriate things on some one's motivating poster.  It's acceptable to behave badly.  The coach told me that they are all respectful of him.  Really?  This is respectful behavior?

After this weekend's swim meet when we talked about other teams. C tells me all of the things she noticed about other teams regarding team spirit and camaraderie. It was like a rock to the head, I realized she's missing those things from her team a tremendous amount.  I knew it after the poster incident, but didn't realize to what degree. When she can tell me which teams cheered for one another at the end of the swimmer's lanes I knew she was paying attention to the other teams.  She also took note of which groups stayed together and had a team cheer. She's noticing what she no longer has at her team and she longs for it.  I suppose she is telling me that it's time for a change and I suppose I really need to listen.


Sunday, March 4, 2012

Being 12 is so Hard!

After this weekend's swimming,  I am finally to the root of what bothers my girl.  She swam "horrible" in her words today. She was ready to quit and throw in the towel.  This is not an option. I told her you can't quit.  You have to redefine your goals and focus on your training.  Quitting is like giving up and that is just not possible.

I talked with her coach about this.  He also mentioned that she's swimming much less than the other girls. That due to illness and injury he thinks she's lost her drive.  I talked with her about this.  She admitted she's afraid to get injured again and has taken on some bad habits out of fear.  He also mentioned that he has a lot of girls in his group.  That she's used to it being just her and one other girl and that C just needs to get in there with them and make friends.

C and I talked about this information from her coach.  I think it was very helpful to know how her practices were going to have a conversation about where she can be accountable for her swimming. The changes she can make to swim better.  She said she's ready to work hard and try to get to her goals.  So now quitting is off the table.  Such a relief!  She loves the water.

I also inquired further with my daughter about the "getting in there" and making to work it with the other girls.  To this I was informed that she's not really interested in a lot of the same things as they are.  That she doesn't like to hear them talk about other people badly.  Preteen and early teen girls are tough.  They aren't old enough to be big, and they aren't young enough to be small.  Some want to grow up way too fast.  I asked her point blank if she felt too immature to be doing that cliquey stuff and she said yes.  She just wants to have fun.  I also know that C doesn't want to grow up.  She wants to stay young.  Puberty is not a welcomed friend to her.

Being 12 is so hard... will it get easier at 13?