Barrier

The past few days have ended with Ian walking through the door and me saying:

"please! please put her in the stroller and take Luca and Tessa for a walk for 15 minutes!"

To which Ian responded, "but it's raining"

And I returned with "I don't care!"

Off he went with the two of them into the rain.  What a trooper my husband is.

I threw my body onto the floor, closed my eyes, and focused on breathing, in, out.  The feel of my lungs filling.  Counting the seconds it took to fill my lungs.  Then releasing all of that air and counting as I did so.  Repeat.  Thinking of breathing in cool, calm air.  Breathing out hot stress.  Release.

You know those days where everything is going wrong and you cannot figure out why your child is screaming for the umpteenth time?  Yes, we've had a few days in a row like that.  With Luca's communication issues, I sometimes just get exhausted trying to figure out what she wants.  It's like playing 20-questions just to understand that she wants the blanket corner turned this way, or her dinner on a different plate, or a different kind of hummus for snack.  Now think of all the peculiar things toddlers ask for or what and how precise things are, and imagine playing the 20 question game to get there every single time.

It is tiring.  I feel like we are constantly playing a game of charades - her giving me clues that I have to guess.  I jump around the room pointing to various things trying desperately to make the whining stop.  This? That? How bout this?  A diaper?  You don't need a diaper!  Oh a diaper for Elmo?  OK!  Oh, no.   I must have put it on wrong.  She wanted to be the one to put it on.  Oh a cloth diaper?  I am so confused!

Sometimes, I am good at it.  But some days, I just cannot figure things out and the whining turns to screaming with real tears streaming down Luca's face.

I end up breathless, exhausted, exasperated, desperate to figure out what her quick brain is trying to tell me.  When the whining turns to screaming, I sometimes end up in tears, scooping her up and rocking her back and forth saying "I am so sorry I don't understand.  I'm trying."

Sweet girl.  My heart breaks on these days.  And not just for how frustrating it is for you, but how frustrating it is to be your mama and not be able to figure out what my child wants or needs.  I feel so in sync with you the majority of the time.  But this communication is a barrier that needs to be broken down.

Every single day, I pray for Luca's speech.  I pray to please allow me to understand what she wants and needs.  But on these days, I want to shout at God and say, "hasn't she been through enough?  Please let her be understood."

In that same prayer, I am so grateful that her brain is working beautifully.  She clearly has these high thoughts and problem solving and pretend play ideas in there.  The communication part is where she is struggling.

I am told her speech is improving and we certainly hear it here and there.  But the process is slow and I find myself overwhelmed by the homework involved to keep the improvement coming.  God, please give me the patience I need.  The power to get through this.  The grace to get through this period with respect and understanding for what this is like for Luca.  And please, dear God, let the speech come!

And thank God for Ian - even on rainy days he takes her off my hands so I can sit in the quiet and regroup.  Allow things to become more clear.  And when they walk back through the door, I can look at my child with clarity and be grateful.

Other moms, help!

This post is for other moms out there.  About 1.5 months ago, I wrote about my adjustment to returning to law school.  I mentioned that Luca was handling it beautifully, and she was.  Until about 2 weeks ago.

People, I am losing my mind on the two days I go to school because this little girl freaks out until I leave.  From the moment she wakes up, she can sense that it is a school day for me.  I am typically running around getting ready, attempting to eat a little breakfast and drink some coffee while I pack my bag, make my lunch, and get ready.  And the entire time, she cries her eyes out.  Huge, massive, real tears.  And today, she even head-butted my legs while I blow-dried my hair, then proceeded to slap my legs repeatedly all while stomping her feet angrily.  By the time I am dressed and my hair is dry I am exhausted and anxious and irritated and she is so worked up that she even gagged and threw-up this morning.

How do you moms get ready for the day with your kids around you?  I have tried putting one of her shows on TV while I blow-dry my hair near her.  I put the ipad in the bathroom while I shower.  I have tried providing toys for her to play with, and leaving the bathroom door open so she can come in and out of the bathroom freely.  Fail.

I started getting up earlier to shower and blow-dry my hair before she wakes up.  That worked a little better except now it almost seems like she senses it and wakes up right before I do on school days.  She woke up today 6 minutes before my alarm went off - a full hour before her normal wake-up time.  Fail.

I wish I could shower and do my hair the night before, and even pack my lunch then too.  But typically I am up late finishing school work after everyone goes to bed.

How do you occupy your tot while you get things done in the morning?

A little confession

I had grand plans to write about our weekend, and share how Ian and I met 8 years ago on St. Patrick's day.  This happens sometimes, where I have plans to share something, and then as good as my intentions may be, something intervenes and I do not have the energy to finish the post yet.

I am having one of those days.  Where the unknown about L's health overwhelms me.  Where I end up curled up on the couch sobbing uncontrollably while L naps.  These days do not happen as much as they used to, but it knocks the breath out of me when they do happen.

I have a little confession.  Last year, I took a couple months off from blogging.  When I came back to my blog, I never explained why the break was needed.  The truth is that mentally I was in a bad place at the beginning of 2012.  L was finally somewhat stable.  She had just had her PICC line removed at the end of January 2012 and we were spending more time at home.  That time allowed us to have some breathing room, some down time, and with that time meant I was all the sudden flooded with the bottled up emotions of the last 1.5 years.  That was confusing - she was finally stable and yet here I was not even appreciating it because I was so in over my head with the hows and whats and whys of where we were.

I found myself angry at the world.  Irritated the second I woke up.  My patience was non-existent and I took it out on Ian mostly, and felt overwhelmed taking care of L.  I knew something had to change. So I started seeing a therapist.  Best decision I could have made.

I have been with the same therapist for about a year now.  It gives me a place to let go of all of these fears.  While Ian and I share our fears and joys with each other, having a medically fragile child means very extreme fears and anxiety sometimes.  For us, we often have different fears at different times.  Is it fair to share some fear or thought about her future if the other person has not reached that fear yet?  I tend to jump ahead with fears more quickly than Ian - probably because I am the one that goes to her appointments and also researchers more than is probably helpful sometimes.  Ian tries to stay in the present as much as possible.  Seeing a therapist has allowed me to put those fears on someone else's shoulders and I am able to come home feeling refreshed.

The next few months as I was seeing my therapist, I could feel myself healing a bit.  The days where I felt overwhelmed became fewer and more spread out.  I suddenly started appreciating my everyday with Ian and L.  I started feeling more comfortable getting together with friends again.  And a year later, I am in such a better place.  I am happy every single day.  I have so much love and respect for my husband, and my heart swells with happiness watching L grow into a beautiful little lady.

But then something like today happens, and I have another one of those days.  Sadly, being in the transplant community means we witness some stories that make my heart ache.  Another transplant family lost their loved one.  Sometimes hearing of such stories makes my heart ache and I can keep moving forward.  Then, like today, my fears come out to haunt me after hearing such details.

I allow myself this short amount of time to let go of these tears, accept the fears.  They are normal and rational fears when you have a transplant child.  Something I have learned is that if I try to push the fears aside, it just hurts even more days later when they come creeping back up.  If I think about them, give myself a time limit to accept those fears as valid feelings, then I can typically move on more quickly from such a debbie downer episode.

And then when I hear L wake up, I brush the tears away, take a deep calming breath, and go in a swoop her up and soak her in.  I wrap my arms around her, touch our noses together, breathe in the scent of her sweet curls, and memorize every feature of her face as she smiles at me.  Life is good, even on a day that leaves me emotionally exhausted.

Adjusting?

Going back to law school has been an adjustment.  In the beginning, I told myself it would feel like normal in no time.  Deep breath.

But I'm a month in now, and it has not gotten easier.  It does not feel normal.  I realized that being in school while being a wife and mom is just plain hard.  I constantly have to balance which role comes first at that moment.  I know it will be worth it and I have no regrets about doing this, and doing it right now, but I think it will just be plain hard from here on out.

Luca, thank God, is totally fine with me having other things to do.  Ian has had to take on more alone time with Luca on the weekends.  And I spend a full weekend day doing work.

But it made me think that this feeling, of feeling like I am being pulled in different directions, is likely what it is like for any working mom (stay-at-home-moms of course have extremely important, hard work so please do not think that I am saying any differently).  Working moms have different hats to wear.  They have to focus and be 100% on at work, while also taking care of being mom 100% too.  Yet somehow, I think even at work all moms leave a piece of their hearts at home.  That is what I find difficult - when I am doing schoolwork, I worry about what Luca is up to, even just wondering what she is doing, and when I spend time with her, my mind is constantly going through everything I need to get done for school.

Do we ever really fully adjust or find a happy balance?  Or do we just learn to balance in a way that does not leave us feeling miserable?  Guilt.  Worry.  Two feelings I think come with the territory of being a parent. Is there a way to ever let go of these feelings?

I attended a workshop at my previous job.  It was all about work-life balance.  And the speaker said something like, "in what universe did we get the impression that we can be 100% at every single thing we do?  Mom, wife, businesswomen, fit, daughter, sister, friend.  This 'have it all' mentality is dangerous and sets us up to constantly feel overwhelmed.  We cannot be 100% in each area, all the time.  Balance is about divvying up our time and energy to equal 100%."

That speaker left a big impact on me.  It is true that when I let go of this need to be perfect in all areas of my life, it is freeing.  It allows me to focus on each task better.  For me, my top priorities are my marriage and Luca - everything else will have to be behind that.  If that means less time on school work, then so be it.

I am making sure to keep a good fiction book next to the bed to read before I go to sleep at night.  It relaxes me, and keeps my mind from wondering to that massive list of to-do's.  I know that if I let myself start worrying, my mind starts racing and before I know it, it will be 2am and I will still be awake, worrying.

Breathe.  One day at a time.  This is just a phase.  It will all be worth it.  At least that's what I keep telling myself.

Today

2013 started out a bit more adventurous than I would have liked.  Luca was diagnosed with a complication from her transplant.  Right now, we just need to learn to live with it.  Luckily, the complication does not cause any discomfort for her - but it causes some worry for Ian and I.  Last night, we ordered a fancy video monitor to keep a closer eye on her while she sleeps.  That should help us all get some more restful sleep so I don't have to keep checking on her if she coughs or sneezes in the middle of the night.

But we are moving forward.  After getting that news yesterday, it was hard to leave her today to attend my first day back in law school.  This is a wonderful opportunity and it kind of forces me to move forward and not dwell on her diagnosis, but still, she's my baby and I feel more comfortable being with her, just in case.

But here I sit, in the cafe at school, writing a few words here to record this momentous day.  I was not sure if I would ever be able to come back to school.  Or if Luca would ever be at a point where she could be left for the day.  Here we are.  Arms wide open for all of the possibilities given to us.  Keeping our fears to the side.  Trying to push forward and live.  It is certainly a process, but we are getting there.  And along the way, we are so grateful for everyone in our life helping to make this opportunity a reality.  Thank you.

Change is here

I hinted awhile ago that I have been busy taking care of some things in life that will lead to some changes around here.  Well, here it is.

I am starting back to school in January.

Most of you know that prior to Luca's birth, I was in law school.  In fact, she was due in July and I was scheduled to start my 3rd and final year of school just a few weeks after her birth.  Then, she was 2.5 weeks overdue, and then, well, we all know what happened next.

Since then, life has been on hold.  I knew that I wanted to finish my degree, but I also knew that we cannot afford to take out anymore student loans, as my current student loans for my first two years of law school will be difficult to pay down now that we can anticipate lots of medical expenses in our lifetime.

I met with some of my favorite mentors at my school, and talked openly about my desire to return to school, but also about the financial issue.  Then, one of these mentors stepped up and advocated for me.  Then, another one did.  Then, the financial committee got involved and wanted more information about our situation.  I also mentioned that I have done a few things to give back to Children's during my time away from school.  They wanted more information again, so one of Luca's doctors stepped up and wrote a letter on my behalf.

And then, I got a call that made me jump up and down and do a happy dance with tears coming down my face.  **My school has agreed to cover the cost of tuition for the remainder of my credits.**  Can you believe that?!  That prayer has been answered.  I still have to worry about money for books, and for the small amount in fees per semester, but I have faith that somehow, some way, that money will come to us.  The hard part, the tuition, is being covered.  For that, thank God.

I am officially registered.  I plan on taking 7 credits during the spring, summer, and fall semesters of next year, and then I will be done.  I do not plan on taking the bar.  [EDITED:  At least not take the bar at this time in my life.  The hours of studying required would be impossible while also managing Luca's appointments and being a mom to her.  Maybe once she is in school full-time it will be an option.]  Instead, I plan on looking for a job that allows me to help our family financially, and allows me to do some good for kids.

My schedule for the Spring semester is flexible enough to be home most of the time, and on the days that I am at school, Ian's parents will be taking care of Luca.  Both families have been more than supportive these past couple years, and once again they all are doing everything in their power to help us move onto a better stage in our lives.  We are so lucky.

I have so many people who helped make this happen.  I am putting it out in the universe that I want the means to pay this forward one day.  It won't be tomorrow, but one day, I want to ensure that someone else in a similar situation has the opportunities that I have been given.

The time away from Luca will be good for both of us.  We have been attached to each other for over two years, and she has been giving us every sign that she is ready for some change.  I am so grateful for this time home - it was necessary and we were fortunate to have family around us that enabled me to stay home.  And I never know when something else will happen in Luca's medical situation that will require more intervention - so for right now, when our life is beginning to take on more normalcy, I am taking advantage of it and finishing this degree.

It won't be easy balancing school on top of everything else in this crazy life of ours, but I have high hopes that it will all be worth it.

Day 29: Croup, again

My sweet girl was up a couple times overnight needing some snuggling in order to sleep.  I was suspicious that maybe she was getting sick because she does not normally wake overnight.  Then in the wee hours this morning I heard her coughing while sleeping.

We woke up to her cough sounding croupy...again.  We made a trip to her pediatrician's office this morning to get on top of this so we do not end up in the ER again.  This round of croup has not brought a fever with it like last time...but her poor voice sounds so mechanical it is pitiful.

I did not want her napping alone so I brought her into our bed to lay down.  If you know Luca at all, you know she only sleeps in her bed and that all attempts to have her sleep with us have failed (we do not want her sleeping with us, but it would make sick nights a bit easier to have her in our bed).  I guess she was feeling pretty crappy because after a little bit, I looked down and found this...

I gently moved her to the middle of our bed and watched her chest rise and fall.  There is something about watching your child sleep that brings such joy.  It is often in those quiet moments that I am overwhelmed with gratitude and my heart swells with love.  It was so peaceful watching her today that I dozed off for a little bit with her.

Hopefully this round of croup passes quickly.  In the meantime, I am enjoying these cuddly moments with my baby.

Day 28: Letting go

After my crazy Monday, I felt the need to take a breather and focus on Luca for a couple days.  I know this time at home with her is precious and I will long for these days together when she is older.  There will be more exhausting days like Monday, but those days are all a part of parenting.  After a day like that, I decided to step away from the computer and email and just appreciate my time with her.

I realized that she is acting out and is more whiny on the days that she has no outside stimulation from other people or kids.  She is ready to have more toddler interaction and life outside of just mama.  She desperately needs more stimulation that I can solely provide at home.  I am going to make an effort to get her out and about and plan to take her somewhere each weekday.  Of course, we do typical errands outside of the house, go to playgrounds, and play outside, but she needs more than that.  These fussy days are clearly showing me that.

Yesterday we went to a nature center where she colored, saw snakes, turtles and an owl, and ran around exploring. (Pictures are terrible because they keep the lighting very dim for the animals.)

Today, I decided to check out a My Little Gym class.  I know what you are thinking - she is over two and has not been to one of these classes yet?  I am so worried about germs that I am often hesitant to take her to such classes.  It is easier to do classes when I know the teacher and they know that she is immuno-suppressed.  So she had never been to one of these classes.  But then, I remind myself that we transplanted her to give LIFE.  She is not living a quality life if I isolate her.  This idea is so much easier to say than do, because we have seen her at her worst and want to keep her healthy.  But we are trying to learn to let go a little bit.  Baby steps.  Deep breath.

So I took her to the class and she loved it.  I also took a bottle of purell like always, and periodically had her purell her hands.  And I purposely did not tell anyone that she has any medical complications.  I do not want her always to be seen as that kid.  I want her to be able to define herself outside of her medical situation.  While we are still absolutely careful about what types of classes, events and places we expose her to, we are trying to give her regular toddler activities that provide her the stimulation she is so desperate for.  This will just be another balancing act that we have to master - giving her the room to grow and explore while also being cautious and keeping her safe.

Deep breath.  Let go.  Let her live.  Much easier said than done.

Day 3 - Alone time

For several months, Ian and I had been making alone time a priority.  We arranged for a grandparent to watch L for the day at their house, or to run errands alone, or to go out for a meal just the two of us.  This fall we kind of got out of the habit while we caught up with friends and did lots of fall activities.

It was time for another day.  Today we dropped her off at one of the grandparents and then took the day to ourselves.  We had a long lunch that absolutely hit the spot - we had beers and burgers.  Then we ran some errands and did a quick grocery run.

I am embarrassed to even admit how lazy I was after that.  We came home where I took a long nap and a hot shower (how I love showering without holding a little miss on my hip).  Ian listened to music and cleaned.

It was totally silly the way we spent some of our time home - but it was totally needed.  Some peace and quiet was just what we both needed to relax.

Hopefully we can plan more date nights or days together soon!

The guilt that comes along with parenting

Over the past several months, I have been reading a ton.  I am currently reading Bringing Up Bebe by Pamela Druckerman.  I was intrigued by it and wanted to see if I could take away anything useful for my situation.  While a lot of it seems like common sense, one particular section of it keeps coming back into my head.  The author writes about how many of  her American friends feel guilty for wanting time and space away from their children.

I think here, there is pressure to give up our lives to raise our children.  And personally, I can think of a couple of friends or friends of friends who seem to have no identity outside of being a parent.  All of their children's accomplishments are their own.  While I certainly believe that I play a huge role in Luca's life and feel that I contribute to how well she is doing, I do not want her successes or failures to control all of me. 

Why do we feel such guilt as mothers/parents?  I think that we are so afraid of what our actions look like to other parents.  I find that as parents, we are so quick to judge others, or throw in our opinions when they are not asked for.  Parenting is hard.  The best thing we can do as parents is support one another.  Sure we will all screw up.  But we need to learn things on our own and be respected for doing so. 

Parenting is hard for anyone.  Parenting a child with special needs is even harder.  There are fewer opportunities to get away from the job of being a parent, and sometimes I feel like a manager - managing all of her appointments, specialists, therapies, homework, medicines, etc.  The need for personal space/time is even more important to balance the chaos.

I am not quite finished reading the book, but if I have taken one lesson from it, it is that we need to let go of the guilt that so often accompanies our taking time for ourselves.  So I am going to make it a priority to actively let go of that guilt.  Every time I take time away from Luca to regroup, I am going to remind myself that I am my own individual and that I not only need this break, I deserve it.

How do you manage your feelings of guilt as a parent?

Once again, I have gone astray from this little blog.  I wish I had some great excuse...but life gets busy around here and time just kind of slips by.  I mean to blog and have so many things I want to put down here.  But the days go by and I have to choose those free moments of quiet carefully.

I feel like Luca's assistant many days - managing her doctor appointments, phone calls to insurance companies, filing all of her paper work, doing her therapy exercises, chauffeuring her to and from her appointments.

And it seems like her little immune system is very sensitive.  While none of these issues have warranted hospital admissions (thank God), I sincerely hope and pray that we can have some better stability soon.  Since November, it has been one pesky little thing after another.  Colds, 3 ear infections, multiple teeth coming in, constipation issues, and currently, a pretty bad infection around her g-tube.  Last week for example, between hospital visits and pediatrician visits, we spent three days visiting doctors.  That excludes days of therapy at home.  And on the days we were not at the doctor's office, I spoke with her pediatrician every single day.

I want my little happy girl to be just that.  And while we get a good day or two here and there, inevitably one of the above sparks up and causes her discomfort.  And as a mama, it is incredibly hard to watch your sweet babe in pain or discomfort.  On days where she is happy, she is independent and wants to play and run around all day.  On the happy days, I am able to accomplish some things like laundry and phone calls.  On days where one of the above is bothering her, she is whiny and clingy and it leaves me another day of getting nothing done, and I lay my head down at night exhausted, both mentally and physically.

I am hoping with the spring weather around the corner, that it will bring with it some stability.  I want my happy girl back!  If nothing else, it will allow us to get out in the sunshine and provide some new distractions and adventures.

On having more kids

One of the hardest things for me personally about Luca's medical issues (besides the actual heartache of seeing her go through so much) is that the culprit is genetic.  To be a carrier for a urea cycle disorder is extremely rare.  For two to end up together is even rarer.  How in the world did Ian and I choose each other, both carriers of a deadly disorder?  (And by the way, did you know most people have several genetic mutations?  Genetic testing needs to be more affordable so that people can be tested prior to having kids - then people are at least prepared for the possibilities!)

I had always imagined having multiple kids.  But personally, Ian and I decided very early on after Luca's diagnosis that we would not intentionally have kids in the natural sense.  We would not ever want to put another child through what Luca has been through.  (Note that many other urea cycle parents choose to take the chance.  It is a 25% chance with each pregnancy that the child will be affected.  We made this decision for us, and every couple must make the same decision.  Please do not read my words as judgments towards others who make a different decision.  This is simply what we feel most comfortable with.)

One of the things I was worried about what seeing our friends start having baby #2, #3...etc.  And recently, I have had to experience exactly that.  I thought that I would be upset or jealous.

But instead, I find myself so incredibly happy for them.  I feel like all parents should rejoice when having more children.  You do not have a genetic disorder and your child is healthy - have more!  The more the better!  (Okay but maybe not as many as the Duggars).  

And I actually feel sad when a couple, who has a perfectly healthy child and the financial means to support more children, decides not to have anymore children. 

I hope one day we have more children.  We may go about it differently (we can do genetic IVF to avoid having another child with UCD, or we may adopt).  I look at this face and know how in love with her I am, and think, I want to eventually have a sibling for her.

Priorities

First, hi!  It has been 2.5 weeks since I last updated.  I feel like I have been neglecting so much in my life.  I have doctors appointments for myself that I need to arrange, calls to make, blog and caringbridge site to update, exercise to make time for.

The other day I was trying to get some stuff done online.  I put Luca on the floor with some toys and quickly turned to my computer.  I heard a loud bang and knew immediately she had slipped on the hardwood floors and hit her head (she was crawling - not standing when it happened).  My first response was to get to her and pick her up...I knew she was fine but obviously wanted to comfort her.  Then, I was mad.  Mad that she couldn't sit still with toys for less than two minutes while I printed a form I needed to fill out for one of her medical appointments.

Then, I felt immediate remorse for being mad.  Mad at her for what?  Being a baby?  Doing exactly what she should be doing at her age?  I was taken aback at the anger.  And knew immediately I was taking it out on the wrong person.

Really, I cannot take it out on anyone.  This is our life.  It is crazy and busy and not always the most organized.

I am trying to learn to accept that with an active little girl in the house, who naps very little, things have to go to the backburner.  There will never be enough time in the day to get done what I need to.  I actually think back to pre-Luca days and laugh.  I laugh because I used to think life, at times, was super busy.  How my days now mock those days!  And I also laugh because I am so busy these days, but look back at the end of each day and think, "what the hell did I even accomplish today?"  I used to be able to write a list of to-do's for a busy day, and tackle most of them.  Now, I have a never ending list of to-do's and I get done less each day than the items I add each day.  I say I am trying this acceptance thing because truly, it is tough for me to put things aside.  I do not feel comfortable procrastinating or having a long to-do list.  But I need to learn to accept it because this is the way things are going to be for awhile.

While I feel stressed out by having this long list hanging over my head, I remind myself how blessed I am to have this growing little girl keeping me on my feet, distracting me.  She is my reminder as to what is important in life.  These other things can wait.  I do not want to miss any moment with this precious girl.

(I wrote today's post while wrestling Luca in my arm.  As I finish this sentence, she is busy occupying herself with slobbering all over her foot.)

And to leave you with a photo.  Taken by my sister over the weekend.  We asked her to take some family pictures of us so I can send a holiday card this year...and Luca, she refused to smile for most of the photos, including this one.

Raising a daughter

I was sitting on our front steps with Luca.  She was in her stroller, babbling, playing with a couple toys, looking up at the sky periodically, smiling when the wind would hit her face and make her hair stand up straight. 

I heard kids from down the street.  As they got closer, I saw that they were about high school age.  And one of the guys was yelling at the girl he was with.  Luca noticed them too, very curious about anyone who she can see.  They walked by, and with complete disregard for me sitting with my curious baby, the boy yelled at the girl to "go f*$# yourself, bitch", to which she responded for him to "go f*$#" himself.  Luca looked back and forth from me, to the kids several times.  She is looking at me for reassurance when new people are nearby.  I just smiled at her and distracted her with one of her toys.

After they were out of earshot range, she looked up at me, and while I know she cannot comprehend what I said next, I felt it was necessary to say, "do not ever let a boy say that to you."

It got me thinking about raising a daughter.  I want her to know that boys should be gentlemen, and always treat her with respect.  I want her to know how to stand up for herself to put a boy in his place, but then know better than to ever hang out with him again.  I want her to know, too, that she should treat guys with respect.

I did not always date or hang around the best of guys growing up.  But ultimately, the man I chose to spend my life with, is the epitome of being a gentleman.  I hope she learns from us, and especially from Ian, how she should be treated.  I think it also helps that I was raised to be a strong girl.  I think it partly explains why I have a sharp tongue sometimes.  And it helps that I had a brother who was super overprotective.

But raising a girl to be a strong, independent, classy girl is a tough job today.  And while I know she didn't understand what I told her, I felt it was appropriate to start explaining things to her the second she witnessed that. 

How do you help raise your girls to demand respect?  And how do you teach your sons the same?

Curiosity

(I will start this post with the good news that we are home!  Ok, onto today's post.)

Luca is at the age where she is into everything.  If it is near her vicinity, you can count on her seeing it, and trying to get it.  If she does get it, she wants to pull/bang/examine it.  She is curious, for sure.

This is normally a fun things to watch.  As long as you surround her with kid-friendly items, it is like seeing new objects for the first time through her eyes.  An empty shoe box, how amazing!  A plastic spoon, wow this is the most cool thing I have ever seen.  Ohhh, and the way my hand sounds when I pat the box, the most beautiful sound I have ever heard!

But things are a little different with Luca.  There are TONS of not kid-friendly items near her, and even on her.  Like the two long tubes that stick out of her onesies that go into her liver and bile ducts.  It would be really horrifically bad if she ever pulled those and yanked them even partially out.  And her g-tube sticks out the bottom of her onesie as well.  She has yanked that out a couple times, and it never ceases to startle me when I see the hole in her belly and have to reinsert the tube into her belly. (Here is a post I did about the specifics of her g-tube, and comparing it to a piercing.)

And she also has a PICC line, which is like a permanent IV into her upper arm.  I dangles down long enough for the hand on the arm that it is placed to reach it.  So we keep the PICC tucked under a bandage to prevent her from being curious.

So Luca is learning very early on what my scolding tone sounds like.  I will sometimes turn around for a second to pick up my drink and turn back around to see she is yanking on one of her drains.  I do not mean to scold but I know the consequences of that tube being pulled and the thought of it being pulled sends such alarm and panic through me that I cannot hide it from her.

I normally pry whatever off-limit item from her hands and tell her "no, we leave our tubes alone."  She normally reaches for it again while I find an okay item to hand to her in place of the off-limit item.

This age is also quite challenging for Ian and I to empty the bile drains (the bags that attach to the drains have to be emptied twice a day, and yes it is as disgusting as it sounds).  Or to change her PICC line dressing (the site where her PICC line goes in is sterile and has to have a specific dressing on it, and is done with a specific technique that it require both of us to work together to do.  Only the person who is wearing sterile gloves can touch any of the dressing items).  Or to change the bile duct dressing where the drains go into her abdomen.  This dressing is done the same as her PICC dressing and is a pain to say the least. 

And let's not forget about the fact that Luca has IV meds run 4 times per day, so the IV tubing hangs.  For this, she has to wear a restraint on that arm so that she does not play with the line the entire time.  She really enjoys wearing the arm restraint.  Or not.

Ian keeps saying he cannot wait for Luca to walk.  Easy says it for the person who is not alone with this maniac angel all day.  If she is this into all of the stuff around her now, and she is not mobile, God help me when she is mobile!  Of course I am excited for any new milestone of hers, but I do not mind that we still have some time until she is walking.

Guilt

I was driving home last night, or rather, to our home away from home, lost in thought about our life (as usual).  I was getting close, anxious to get back to eat and see Ian.  He left work so late that by the time he called to say he was leaving, Luca was falling asleep.  So he went directly home instead of meeting me at the hospital.

I felt down, as I normally do when I leave the hospital.  So I was singing along to music that was turned up too loud.  I was in the left hand lane of the busy road where people drive over 50 mph.  I happened to see something move in the middle of the grassy median.

A baby deer.  I glanced around to see if any mama was with the baby.  But the deer was all alone, eating at a shrub.  Clearly much too young to be alone.

The next thought in my mind "just like Luca."

Instantly, the guilt washed through me.  What a horrible mother I am every time I leave her at the hospital.  Logically, I know I cannot be with her all the time.  And I know she is not really alone since she knows every nurse so well.

But the emotional part of me, the mama in me, thinks that because I do not sleep there, maybe she does not even feel like I am her mom.  Maybe she thinks I am just the person that comes to keep her company everyday.  Will she suffer and not be capable of having true emotional bonds because I am not with her overnight?  Is she suffering already?

All of these thoughts played on repeat once I saw that deer, all alone.  Stupid I know.  But real.

The logical part of my brain kicks in, reminding me that every night nurse reports that she falls asleep within 10 minutes of me leaving, and that she sleeps through until the next morning.  She does not wake up for her diaper to be changed.  She does not wake up to her IV beeping.  To does not wake up to her monitor monitoring her vitals beeping occasionally.  She does not wake up every 4 hours for vitals.  She sleeps through almost all of it.  And if she does wake up, she goes back to sleep almost immediately.  I would not stay asleep for all of that.  I would be awake.  I would actually probably disturb her sleeping MORE because of tossing and turning on a creaky chair while I try to sleep, or when I have to pump, or go to the bathroom.  She associates me leaving with it being night-time, time to go to sleep (much like she would at home when we turn off the lights in her room, place her in her crib, and leave her to sleep).

But no matter how much I try to justify that to keep going and being put-together and continuing to love and care for her during this crazy journey that I need to sleep, I cannot wash away the guilt that aches through every muscle in my body.  The guilt that aches in me every time I am not with her.  It does not go away.  It is ever present.

I had never experienced that type of guilt until I had Luca.  Sure I feel guilty for various things in my life - but this type of guilt is something that never escapes.  Guilt that she has this disorder.  Guilt that she has to endure so much.  Guilt that she may never have siblings.  Guilt that she will never have a "normal" life.  Guilt that I cannot make things better.  Guilt that I cannot be with her all the time.

Stupid deer.

Welcome

Hi there!

I know I am getting some new readers so I thought I would take a moment to show you around.  First, welcome!  You should know that I try my hardest to post often, but with our lives being kind of insane right now, I go missing sometimes.  But I always come back!

Let me tell you a little bit about me, and this blog!  I am Katie (although I go by several different names).  I am wife to Ian.  Mama to Luca.  This blog started (in 2007) as a way to document the planning of our wedding after Ian proposed, but has evolved into a place where I document funny stories, some sad stories, - basically all of the adventures of our life together. 

We had an amazing wedding in Washington, DC, a spectacular honeymoon in Greece, and then moved to Baltimore just a few weeks later for me to enter law school.  Our first year of marriage was full of joy and adventures, especially with my nose burried in the books for most of that time.

We were shocked to learn we were going to expand our family.  Just a few months later, we learned that our lives would be filled with pink, and that Ian would be surrounded by his three girls (me, Tessa, and baby girl).  I was blessed with a smooth, happy pregnancy.  I went way past my due date (and yes my dates were accurate, and yes the waiting game was freaking awful).  Then, finally, baby girl debuted 2 weeks, 3 days past her due date.  Giving birth was one of the most wonderful and wild things I have ever done.  I still wonder how she ever fit in my belly, or fit coming out of me!  (You can read her birth story: Part I here and Part II here.) 

The night before we were discharged from the hospital, Luca got sick.  I spoke about that day here.  She was diagnosed with a rare metabolic disorder called Urea Cycle Disorder (specifically, CPS-I).  Once she was released from the NICU over one month later, I talk about the transformation.  Until December 14th, our life was busy keeping Luca healthy!

Then, Luca had a liver transplant (thanks to my hubs, Ian!) on December 14th, 2010, to act as a cure for the metabolic disorder.  Luca's story even made it into the paper.  We have been in and out of the hospital since then.  All the while, I am still pumping (even though it is a big pain in the butt)!

Browse around in the archives to read more.  Some months that had some big events were June 2008, July 2008, August 2008, January 2010, March 2010, August 2010, December 2010, January 2011.  Feel free to post comments or questions or you can even email me at frommagerkstoidos@gmail.com.  If you want to continue reading our journey, please follow the blog (or follow me on twitter).  Thanks so much for stopping by:)

Happy reading,
Katie

Some other posts that I either like, or think are helpful:
A picture I've been waiting to capture
Should
Some things don't change
When someone has a loved one hospitalized: Part I
When someone has a loved one hospitalized: Part II
Feeding Tubes
Feeding tube questions answered
The ugly side
Here
A typical day in the hospital
My first mother's day
Picture post

A break

Since Luca entered our world over 9 months ago, I have not taken much time for me.  Sure, I spend time away from her when she is in the hospital.  But it is normally to just go and sleep.

One thing that I have been needing was a haircut.  I got one about a month before Luca arrived...and had not had one since then.  It had been a whole TEN MONTHS!  Craziness.

My hair desperately needed a good conditioning, cut, and I wanted to brighten things up a bit.  So Saturday I took time to get it all done (thanks to my sister who treated me).  I got it majorly cut (about 5 inches off) and got highlights.  You would think it was enjoyable but honestly, I do not find getting my hair done a relaxing time.  I stress out and pick out anything that does not look quite right.  The highlights came out way too light so we fixed that (although I think I might have to go back again to get them toned down even more).  But it is done - and it needed to be.  Maybe I won't wait another 10 months to go back.

Sunday, I went bra shopping!  I had been dying to go to this specialty store who are supposed to be the bra experts.  One of my friends met me there and I am not kidding when I tell you that I felt like a new woman when I left that bra shop.  My ladies were lifted and my posture was better.  I was measured at the same size I had been wearing - but apparently I was wearing the straps incorrectly and it was making my ladies sag.  I walked into where we stay when Luca's in the hospital, and everyone commented on how different I looked.  A new woman, I tell you!  And if you are in the DC area, this is the store.

As nice as it was to take time for myself, it was back to reality when I walked into the hospital afterwards and stepped into my mom role, reviewing Luca's labs for the day and getting a daily report.  But, that's life.  Little moments of normalcy mixed into our crazy life!

Incubated

It is no fun for anyone to get sick. You feel crappy, you want to curl up in bed. We have learned that as a parent, it is even worse because you cannot just lay in bed and sleep all day.

It tends to be more scary for Ian or I to get sick because then we have to go through major disinfecting (more than usual) to keep Luca healthy.

Ian woke up with the stomach bug yesterday.  Queue major freak-out.  If you know me, you know my biggest fear is vomiting.  So the fact that he had sickness coming from all areas makes me panic.

Luca is in the hospital so in a way it is good that she is not at home at the moment.  I literally followed him around bleaching everything.  I confined him to one room and one bathroom to make it easier to keep things clean.

But my big worry is not that Luca will catch it since she is not here...but that I will catch it.  Therefore, it means I cannot go see Luca in the hospital. I am literally confined to the house, waiting to see if this horrific bug will get me too.

And...I miss my baby. Today will be day 2 of not seeing her. But, we cannot take a chance since her immune system is compromised.  Her poor nurses will have to deal with lots of phone calls from me today. 

8 Months

Today marks 8 months since Luca entered this world.  And, she woke up in her own crib today.  Unlike months 4, 5, 6, and 7, we are home celebrating her 8 months.  To say I am happy would be an understatement.  I've been floating around the house since we woke up this morning, on cloud nine.

Luca has been rolling from back to front for awhile now.  She is able to roll onto her stomach, but she stops  herself on her side because she absolutely hates being on her stomach.  So imagine our surprise when we checked on her last night, and she was sleeping partially on her stomach.  But we were not surprised when less than a half hour later we heard screaming: she had woken up on her belly and was angry.  She has the strength to roll over back onto her back, but gets so annoyed with being on her belly that she screams and bangs her arms and legs against whatever surface she is on.  We are not sure whether being on her belly is uncomfortable in terms of her scar, gtube, or bile duct drain. 

Every time we get her home for a few days, she progresses developmentally so quickly.  In the hospital, she kind of slows down.  Then we get her home, and she wants to catch up for lost time.  She is desperately trying to sit without any assistance and does for a few seconds at a time - but you can tell that her core muscles still have a way to go to catch up completely.  She has been talking nonstop since we came home.  She was babbling before, but now she is chatting away while we're driving, while I am doing the dishes, even in her crib.

Yesterday, I started the task of trying to feed her by mouth again.  I tried rice cereal and she did better.  I think we will stick to that for now until she actually makes some progress with it before we try anything with a stronger taste.

She loves standing.  She needs assistance staying up, but she locks her legs and moves her tush back and forward to bounce a bit, with a huge smile across her face.  Then, after about 10-15 seconds, her legs get tired and she does not know how to sit, so she whines until I help lower her to the ground.

She sleeps pretty well so long as we put 4-5 pacifiers around her in the crib.  That way, when she wakes up to move positions or stirs, she can feel around and find a binky to hold.  She does not even necessarily put it in her mouth (although she normally does), but so long as she is holding one, she falls back to sleep on her own.

She is obsessed with laying on her back, bending her knees, planting her feet flat on the ground, and bouncing her tush on and off the ground.  She normally squeals with delight when she does this.  It's hilarious to watch (but not so hilarious if she has a dirty diaper that has then been smashed from her bouncing on the floor).  Like this:

She weighs about 8.5 kg.  She wears a size 2 or 3 diaper.  She wears almost all 6-9 month clothes (some 9-12, and can squeeze into some bigger 3-6 month stuff).  She tends to outgrow things in length before she outgrows them in width.

Her hair is super long up top, short on the sides, and pretty much nothing in the back.  Party up top, business in the back.  It's a dirty blond type color, but either shows up in pictures dark, or bright red.  Very weird.

People are split as to who she looks like.  A lot of people say she looks like Ian.  But she looks super similar to how I looked in my baby pictures.  And unfortunately Ian's baby pictures got lost somewhere so we have no idea what he looked like as a baby so we cannot compare.  But I will at some point post my baby pictures so you can see for yourself.  And honestly, it sounds weird to hear that my manly husband looks like my feminine baby girl.  Most of the time, I see a little bit of each of us in her.

It's hard to believe all we have been through in 8 months time.  When she entered the world and was placed on my chest, I never knew what God had lined up for us.  But I knew in that moment, that I loved this precious baby girl more than anything or anyone.  I knew in that moment that I was a mama - and a proud one to say the least.  Although the life we had imagined we'd have as a family of three is not what we had expected, there are some things that did not change: the love we have for her and the goal we have to give her a happy life.