A Good Case of the Sickies

Jacoby got a good case of the sickies last weekend and was home last Monday and Tuesday.  He had a low grade fever and a terrible cough which of course always comes with wheezing as a package deal so we are back to the nebulizer.  As long as we have Despicable Me on, he seems to tolerate it.  He came home this Monday SUPER cranky, on the way to school he told me he was sick but I thought he just wanted to stay home.  Well as I was giving him his breathing treatment, he felt really hot and all he wanted to do was go to sleep so I took his temp...102.8.  Ugh...a good case of the sickies.  Guess who gets to stay at home with him again...moi!

If you have to sit and do the nebulizer, you might as well check out this year's Halloween costumes!

Checking out Riley playing on the playground and helping me carry her stuff!

Poor Little Dude doesn't feel well!

Things I Would Have Told My 29 Year Old Self

It's hard to believe that it's been 6 years, 6 years!, since that fateful day where we learned we'd be traveling along this clubfoot journey.  The day started out with excitement over finding out the gender of our first born but it was quickly deflated by a series of repetitive questions and over analyzing of each part of our baby's anatomy.  We'd later find out the baby was a girl, our sweet Riley, but I will never forget the Dr's words that there were "birth defects that had him concerned."  Those words and his voice still ring loud and clear in my ear, like it was yesterday.  The day ended with fear and a heavy weight on my shoulders that I've carried around for 6 years now and that I will continue to carry as the future seems so unknown for what Riley will face going forward and into adulthood.  We have no clue the limitations her defect will cause her (right now none but arthritis is a common side effect) or the pain she may experience (again right now none), the future seems so uncertain and what the future is for children treated with the Ponseti method is so unclear and each case is so different depending on the severity of the feet.  I wish for a crystal ball daily so that I can prepare myself and Riley for her future. 

But here are some things I would tell my 29 year old self, laying on the table, staring at two crooked feet, two bent pinkies on the ultrasound, learning her first baby had birth defects:

• Take pictures, lots of pictures and when you think you have enough, take some more!  I don't know if it was denial, shame, embarrassment or I just wanted to make it better but we have barely any pictures of her pre-treated feet.  I wish I had a time machine to go back and do newborn photos that included her feet.  I remember being so careful as to not get her pre-treated feet in the pictures and now I wish I had them, I wish I had them as a reminder for me of how perfect she was when she was born despite her imperfections but mostly for Riley.  I want her to see how her feet looked, embrace it, and move forward with the knowledge that she's already overcome so much in her 5 1/2 years of life!  I know in a few years, she will ask why we don't have more pictures of her feet and I won't have answers for her, only regrets of not having more pictures of her feet pre-treatment.
• Normal means different things.  Riley never knew any different from her casts or brace.  She was our first baby, so neither did we.  She was our normal.  When Jacob came around and he didn't have clubfeet, we needed to learn all over again how to change a diaper without a handle bar (brace).  Normal labels are lame, excuse my bluntness but they are.  For Riley, normal is casts and braces, we're lucky that she's never asked why she has all of this stuff and Jacob doesn't.  I hope she never does, she accepts herself as she is and rolls with it.  And to Jacob, it's normal for sister to have casts and an AFO. And Jacob is fiercely protective of her and to him, casts and AFOs are normal for Riley.  In fact, the other day she asked if she could go in the bouncy house at a party and Jacob asked about her AFO.  I was blown away by his comprehension of Riley's needs.   I remember when Riley came out of her AFO and we went for our first walk, Jacob yelled at Riley that she needed her AFO.  Just the other day he put her AFO on and said "I wear AFO like Wiwey!"  This is our normal - our normal is a closet full of casts, constant scruntinizing of positions of feet, braces, and AFOs. 
• Other kids, friends' babies will meet their milestones before your baby and it will be like a stab to the heart but she'll get there and when she does, it will be the best feeling because both of you worked so hard to get there.  No one wants their baby to be delayed, behind, slower than any other kid.  But your baby will do things on their own time and in their own way. 
• People are going to be rude and insensitive.  I remember when Riley went into her relapse and came out of her casts.  One of her friend's mom made a series of snarky comments about the new shoes Riley kept getting.  I had to buy her shoes to accommodate her AFO but she didn't think about that, just made a nasty comment about new shoes.  I get a pit in my stomach every time I take Riley shoe shopping, when I found out we were having a girl, I was excited about the endless pedicures and shoe shopping adventures for us.  None of that is fun for myself or Riley.  I want her to buy shoes she wants but they often don't fit her feet right.  I hope now that she has had her surgery that changes for her.  Or when I met a co-worker's wife and he explained that I had been out on leave because Riley had surgery.  She asked why, I gave my 30 second spiel and she responded with "Wow, that must have been hard knowing if the Dr messed up that her feet would be ruined forever."  But people are going to make rude and insensitive comments, and it's ok, because they haven't walked our shoes (pun intended).  Just remember that you are doing the best so that you can give Riley the best possible outcome and future.
• You will learn more from your child than you ever thought possible.  I learn many things from my kids daily, seeing the world through their eyes is amazing.  But Riley has taught me more than I could have ever imagine.  She taught me to roll with the punches, she faced each stage of her treatment, from casts as a newborn to surgery at 5 with a sense of acceptance, like I said, this is her normal.  When she got sick of answering the same questions about her AFO, she got up in front of 60 5 and 6 year olds and told them about her clubfeet, surgery, her AFO and her Dr.  I get nervous for presentations at work.  Now I feel silly, she faces everything with such a sense of bravery and confidence that I never thought possible from a child.
• This will be a roller-coaster of a journey, there will be ups and there will be downs but in the end you will learn who your support is, you will learn you have strength in the depths of you that you never knew you had.  And you will realize that maybe you were destined to do something with this.  It's so easy to ask "why us?" but in a few years you will ask "why not us?"  5 1/2 years later I have loved meeting beautiful families from all walks of life that I have created friendships with.  We all have the same worries, insecurities and experiences with newborns in casts, braces, and looking for the perfect PJs to work with a brace.  I have loved helping families in their darkest of times to see that there is a bright spot in their child and seeing their babies walk for the first time because I know that immense feeling of triumph when a clubbie walks for the first time.  So "why not us?" we're not special, we're just a family of four trying to make our way through this life that we were handed, and we were handed it for a reason.
• Finally, go with your heart.  You will have to make decisions that could make your daughter's life significantly better or worse depending on the outcome.  You need to go with your gut, with your heart, because otherwise you will lose a lot of sleep.  Fortunately I have never regretted the decisions we have made for Riley - we love her Dr, he's been treating her since she was a 4 1/2 lb newborn and she adores him and trusts him.  We had to decide on surgery, such a hard decision to send a 5 year old into surgery but looking at the results of her foot, I don't regret a thing.  And we made lemonade out of lemons, I was able to take a month off of work to spend with Riley while she recovered and it was an awesome month.  I learned how incredibly awesome my kids are, I learned that I REALLY wish I didn't have to work and I learned that my kids always, always, always deserve to come first.  Yes they may drive me crazy but they deserve more than an overworked, too busy momma!  So no regrets, go with your heart and it will all work out!

This isn't the journey we expected but Riley isn't the little girl we expected, she is much much more, she is stronger, older, more mature than I could have ever hoped for.  She can be trying but in the end, it's her fabulous temperament, her tenacity, and her fight that has helped guide us through this journey with such ease.  Riley is now a month into kindergarten and she's just like a typical 5 1/2 year old.  She's sassy, she talks back, she runs, she jumps, she loves school and her friends and she has faced more than anyone ever imagined and has strength well beyond her years.  I was talking to her teacher last week and mentioned she had surgery in February to correct a clubfoot and her teacher said she would have never, ever guessed.  On the outside, she's just a happy, typical 5 1/2 year old but on the inside, she's much, much more. 

Batter UP!

It's that time of year again.  We have Riley in tee-ball through the city again.  Not only is this her first activity since her surgery (hooray!) but this is her last year in this program before she will start the Pleasanton All Girls Softball League.  She's borderline too old for it but they focus on the fundamentals so we're keeping her in it for that and also just to have an activity because it's been so long. 

Opening Day!

This girl is hardcore!

Slugger

Riley's cheering section, we traded shades, just cause it was funny to the 2 year old!

 

Shameless Brag Post

So I'm going to straight up admit that this is a shameless brag post but I just can't help it, I'm a proud Mommy, what can I say!  I had a super crappy week at work last week.  I have a new boss who does nothing but cut me down and thinks that ending emails in three-?s will garner a quicker response (he does this to the whole team so he's not singling me out, he's just a straight nasty person).  Let's just say I have never felt worse about myself in my entire career and on top of that, I have major mommy guilt because I have had 0 interaction with Riley's teacher, which I am so not ok with but I now feel as if I have no flexibility in my job, which is ironic because I took the job because it originally offered a ton of flexibility. 

Last week was such a bad week that I went to bed one night at the same time as my kids and before you think, "well, that's not that early," my kids go to bed freakishly early at 7:30.  Thursday I had a meeting at Safeway from 3-4 and decided to just pick the kids up early and take them to the Farmer's Market because they have been begging me for weeks.  I needed some quality time with them and needed to clear my head from the week.  At this point, you're probably thinking, how is this a brag post??? (Three ? in honor of my jerk of a boss).  Well here it comes...

I came home to a message that I could have only dreamed of. I wish I could somehow post it to save it forever but Riley's teacher called and left us a message, it started with "Hi this is Riley's teacher, don't worry there is nothing wrong..."  Ha! She must know parents.  It went on to tell us that she just wanted to check in and let us know what a delight Riley is in class and how well she is doing.  Suddenly all my anxiety from the week was gone, they may think I'm and idiot and incompetent but at least my kid is doing well in school and really in that moment, I realized that really, that's all that is important in life.  I am SO incredibly proud of Riley, she's matured so much in the last two weeks, it's truly amazing.  And what makes me even prouder, is the way she takes her brother under her wing and takes care of him and protects him.  We were at a park party today and she heard a toddler crying and she yelled out to make sure it wasn't Jacob and to see if he was ok. 

I was so proud of her I even treated her to a new Lego!  I refuse to erase her teacher's message.  (And have I mentioned how impressed I am that her teacher reached out to contact us!  We got super lucky getting her, Riley's love for learning just keeps growing and growing.)  

Homework Central

Riley gets monthly homework packets which is nice because we can plan and adjust what is done when according to our schedule (which is why her teacher does it this way).  She has certain assignments due each week including, worksheets, a reading log, and a monthly calendar of things to do.  She has homework every day of the week on the calendar, including Saturdays and Sundays.  This week's Sunday homework was 10 sit-ups which was pretty funny to watch!  With all of these moving parts, I need an organizational system and somewhere where I could put her homework so little two year old hands can't reach it.  So I crafted this,  I also would love to have a file box for school papers but this will do for now!

She has online math and reading programs and she looked so old working on it by herself the other day

Long Weekends

I'm a firm believer that every weekend should be a long weekend, the thought of going to work tomorrow is actually making me ill, I hate all the time that I miss with the kids when I am at work.  My work environment isn't all that great but I also feel like I am missing so much with Riley with her going to the before and after school program, I haven't seen her teacher since the first week of school and that doesn't seem right nor does it sit well with me.  And Jacob's daily "I don't want momma go to work, I want momma stay and play with me" on the way to school doesn't help my feelings either.  We took advantage of last weekend and had a good old fashioned family fun day on Sunday. 

We took a ride up to Fairfield and surprised the kids with a visit to the Jelly Belly Factory.  Jelly Bellys are a family favorite so the fact that they could have them at 9AM was even a bigger treat!  After the Jelly Belly Factory, we headed to Napa for some wine and to check out the earthquake damage, the damage was unreal!  I have grown up with earthquakes my whole life but have never seen anything like the damage seen in Napa.  My picture don't do it justice, we passed a church and the whole façade of the church was separated from the rest of the building.  The kids got cranky so we had some lunch and then headed home before full meltdown ensued.