Needing Closure

We need closure.  Not the emotional type that one seeks after an unexpected break up, but the physical kind.   We literally need Harlow's sutures to pull her incision closed and heal. 

I'll start by saying that Dr Beale wasn't pleased with her stitches last week.  He said that the skin surrounding them looked compromised and he switched her to a stronger antibiotic.   We were worried but knew we had to remain calm and stay positive. A few days on her new medicine and the incision was looking better and appeared to be healing; not just to me, but to the doctor as well. Last night when I was changing her bandage, I noticed what appears to be a hole in her skin. The sutures are spread apart and her skin is split.  This is obviously not what we wanted or needed to happen.  The silver lining is that throughout this whole ordeal, Harlow has been comfortable and happy.  She never complains about pain or when we have to change her bandages. She's such a damn trooper. 

I sent a picture of the area to our family friend, who happens to also be a nurse who has worked on many of Harlow's surgeries.  Bonus:  she will one day be quasi family! She confirmed that it wasn't  supposed to look like that and she was kind enough to send that picture on to our doctor. He too, agreed that it was not ideal. 

I'm not sure why, but last night as Harlow was sleeping on my chest, I started having all these vivid memories of her in the hospital, getting respiratory therapy treatments.  I had not thought of those times in a while, so the clearness of the events was a bit shocking to me. I couldn't tell if it was the 32 lb toddler on me or anxiety that was making it hard to breathe. 

Maybe it was a little sign to let me know that things, although not how we hoped, still aren't as bad as how they were.   I know how lucky we are.  I hear and read stories almost daily that remind me of how easily things could have gone a different way. I will never stop being thankful for that. 

This morning when the doctor called to inform me that we needed to go back into surgery, I shouldn't have felt so defeated; but I did. He is hoping that if the implant isn't exposed, that he can just remove the compromised area and put a new incision on the front of her leg. I know this isn't life changing. I know this isn't life threatening.  I know everything will be ok. I'm just...sad.  And disappointed. I'm upset for Harlow. She had such a rough time coming out of surgery a few weeks ago and now we have to put her through all of that again. 

I'm thankful she is here.  I'm thankful she still has limbs that can be operated on.  I'm thankful that this child that I waited so very long for, is built with so much understanding and strength.  And bravery. And cuteness. And mounds of curls.  She's holding up her end of the deal and I'll be damned if I'm not going to hold up my end of it.

I cried. I wiped the tears away.  I say this is a setback. Not a permanent roadblock. Little by little I'm getting the closure I need to move forward and let go of what happened and what could have been.   Now we just need her body to continue working hard to better itself and finally reach the point where we can begin to put all of this behind us.  Closure.  

All Sippy Cups Are Not Created Equal

As many of you know, my parenting style won't be featured in any guidance books any time soon.  I don't think I'm doing anything particularly wrong, but I have a strong feeling that many moms would highly disagree.   That's ok.   Agree to disagree?  

I cherish every single day with my child and in those few rare moments where she isn't my most favorite person in the world, I quickly go back to her days in the hospital and just like that...she's top notch again. 

 People always warn you about the toddler years and how the terrible twos will challenge you...I thought for sure, not my Harlow.   She's so sweet. And quiet. And obedient. 

And then she turned two.  It was like clockwork.  Tantrums began.  Bawling over anything and everything.  Frequently losing the ability to fetch things on her own. Disagreeing with me at every turn and a sudden independence that I wasn't quite prepared for. 

I respect a girl who knows what she wants and I fully understand how certain things are simply superior to their  generic competitors, however, there are days when I can't tell if Harlow is selective or battling OCD.  

Case and point, the Sippy cup.  Like many moms, I bought a variety of brands and styles, as the second you assume your toddler will like one type, they sure as hell will refuse it. $200 later, we settled on the Nuk Sippy.  We all know I'm not a huge fan of the color pink, so I bought a few cups that were green with pink lady bugs and a few that were blue with turtles.   At first it was smooth sailing.   

Then came the urges    

Tell me I'm not alone on this one. 

Harlow gnaws down on the plastic nipple part super hard and grunts and grinds her teeth around.  

Please, for the love of God, tell me I'm not alone on this one. 

Said urges, cause additional holes and new leakage from the cup. This is not acceptable to Miss Priss. 

She must have taken her anger out on the lady bug cups in particular, because now they just won't do. In her crying fits of rage for "Milky," I have been dumb enough to offer her the pink cup.  

What the hell was I thinking?!  

If I'm lucky enough to dodge the cup as it comes flying at my face, in return, I get to experience 5-20 minutes of pure unhappiness and frustration. (Sometimes from both of us). 

Super Nanny would tell me I'm crazy.  That if a child is really thirsty, they will drink from whatever cup is offered. That it is absolutely ridiculous that parents adhere to their child's behavior and exchange the "wrong" cup for the "right" one.  

And I would agree. However...

Some may call it laziness, but there are times when it is simply easier to give in and find that damn blue Sippy.   

Harlow has smartened up and now requests "blue Milky". She also let's me know that she wants it "heavy" which means full.  The repercussions of presenting a half full Sippy cup are dangerous.  

Other fun facts I'm quickly learning from my toddler:

She suddenly insists on wearing "big girl panties"... Over her diaper

Thomas the Train is her Número Uno, with Curious George running in at a close second. 

She agrees that big girls don't need Pacis, therefore she isn't a big girl yet. 

Time goes by at snail speed when I can't get the Apple TV to turn on quick enough 

The "quick wash" cycle actually takes 10 years when her Blankie is being washed. 

"Poo poo" also means "pee pee"

Coloring with her consists of her telling me where I can sit, what color I can use and where on the paper I'm allowed to draw.  Any alterations to this will result in fury. 

Harlow has two bedrooms. "Harlow's room" and "our room".  When I've asked her why she doesn't sleep in her bed, she says "because I sleep with you".  

Any article of clothing that has polka dots on it, resembles Minnie Mouse.  She loves to sleep in her Minnie pjs. 

Rain or shine.  Winter or summer.  Appropriate or not.  The red Hunter boots are 9 out of 10 times, the ONLY accepted footwear.  

Any food that she doesn't like is considered "too spicy".  

Her baby dolls MUST have real milk.   Pretending isn't acceptable and water is even worse.  And as you guessed it, her dolls only like "blue milky" too. 

When I do finally reprimand her and threaten to put her in the corner, she bats her eyes (on command) and compliments me.  Sometimes they are odd compliments.  The other day she said, "mommy, I like your arm. It's really pretty". 

I'm so screwed.  

I will try and fix you

Loss is experienced in so many different ways.  No experience is like another and no two people feel the same.   Many friends of mine have experienced the loss of babies.  I simply cannot imagine.  I still have heart wrenching flashbacks and thoughts of what could have been, but those are all they are.  Flashbacks and thoughts. They aren't my reality or daily struggle.   I believe I am a very sympathetic and empathetic person. I always try to put myself in others' shoes and help find a common ground.  I know this is going to sound so awful and selfish, but the loss of a child is just not something I can allow my mind to imagine. In dealing with my friends and their children passing, I automatically get this gut wrenching feeling and have major anxiety.  I know that most people share in those feelings, but mine still stem for the events of a year ago.  I still cannot hear certain songs without bawling like a baby. I feel so helpless in my attempts to comfort those who have experienced something that I was fortunate enough to dodge. I would never compare my journey to those who have lost a child, but I still know the agony and pure terror of believing you are watching your baby slip away. My heart breaks for anyone who has to continue on without their precious little one, as I know the dark moments I had, when I was told that would most likely be my outcome.   I pray for peace in their hearts.  I hope for brighter days, where they can smile and put one foot in front of the other.  I send love and energy as they begin this dreadful journey.  I hold my Harlow even tighter when things like this happen.   I have this sense of guilt as I sometimes feel like because so many of my own prayers were used and answered, that perhaps they no longer work for others.  I know that sounds silly, but I still say them and hope they are heard.  It's easy to get lost in the shuffle of day to day chaos and forget how quickly life can change and how suddenly people can be taken away.  

Sorry for this super depressing entry,  just have lots on my mind and needed to get it out.  

Landslide

"...I've been afraid of changing, cause I've built my life around you..."

So far this new, fresh year has held up to most of my expectations.  We swore to move forward, with our heads held high and face any new challenges with grace and optimism.   

I'd say I faltered a bit in March, as harlow's plastic surgeon informed us that he wanted to proceed with tissue and skin expansions on her leg; years sooner than we had anticipated. I tried to act okay with this new turn of events, but somewhere deep inside of me, the tears and anxieties started to release again. Harlow has come so far and is just such a good little girl.  She's happy and jumping and running the show in our house and we have been thankful for every single second. The mere thought of taking her down again and possibly tarnishing her spirit, left me with an unbearable aching. I've been told by others and by my own self, that this procedure is a good thing. It will help ensure that she continues to grow and move without any limitations. It will aide in much needed padding and physical scars, that we have slowly adjusted to.  I'm aware that the younger she is, the quicker her recovery will be and the less she will remember. We will start the process in the fall and will advance through the steps over 5-6 months.  I know it's the right thing and the very best thing for her, but that hasn't eased my nerves or my heart.

When I push that situation out of my mind, it's easy for me to get wrapped up in life, work, family etc.  Although I know that change is good, I have been hoping for a little boring normalcy. No major events, as we had more than our share last year. 

And then Dr. Sue let us know that she was retiring.  If you read my blog, you'll remember I wrote about Harlow's pediatrician and just how much she means to me and my family.   She took on so much more than a doctor's role while Harlow was sick. I had always loved her, but after seeing her true colors, I couldn't imagine life without her. I remember when my neighbor told me the bad news...we were at the zoo. I cried at the zoo. Right there in front of the elephants. I just wanted and needed everything to be the same this year and now, a huge part of Harlow's life (and mine) was abruptly changing. I'm trying to accept that we will be ok and with any bribing, perhaps we can get her to care for Harlow somewhere else. 

The questions have started again on if or when Blake and I will have another baby.  This always boggles my mind.  If people asked if we "wanted" more children, I would get it.  It's that they always ask if or when we are having more kids.  Newsflash: we didn't get pregnant easily the first go around. I know people do get pregnant naturally after IVF, but that's not a guarantee.  How could I possibly know if or when I'll get pregnant?.  I may never.   This isn't me being a pessimist, as I would love another baby. Harlow would shine as a big sister and I love having siblings. But I'm done putting that type of pressure on myself.  Would I love another child?  Yes.  But am I slowly becoming at peace if Harlow is my one and only?   Yes.  I've read several articles about why people only have one child and while it wouldn't necessarily be my choice, it was a really good read.  Lots of the points made sense to me.  Could I love another baby the way I love Harlow?  I hope so.  I'm just not making any real plans as far as that goes.  Our main focus is Harlow and getting her in the best place possible.  This next procedure will take at least 6 months and I think that will take up most of our year.  She's so worth it.  

Again, I know change is enviable, but for now, I just want to focus on the present and what I've been lucky enough to be given already.   

2014: i love you, goodbye

Dear 2014,

I have such mixed emotions about you and feel we have had a love/hate relationship these last 365 days. You began with such promise and high hopes.  In early February, we celebrated the beautiful first year of Harlow's life.  A candy themed birthday party seemed only appropriate, as she has brought so much sweetness to our everyday life. I still couldn't thank everyone for sharing in her special day, without choking up.   I'm not sure if or when I'll ever be able to speak about my daughter without getting emotional. It's a strength and a weakness. We watched as Harlow began to gain confidence and the ability to pull up on furniture and walk along side of things. After struggling for years to become a family, everything was finally the way I had always dreamt it to be. 

Apparently you had other plans for us.  On my dad's birthday, the April Fool's joke that unfolded was more than we could have handled or imagined. Harlow went into septic shock from the flu and strep throat and nearly died.  We spent 5 weeks in the hospital, not knowing if we would walk out with our family of 3 in tact or as a man and woman in mourning.   Thank God it wasn't the latter. You scarred my heart and eyes with what I felt and saw. I held my breath as I insanely stared at my baby's breathing monitor, trying to will her to take her own oxygen in and not depend on a machine.  I learned to sleep to the rhythm of beeping from life supporting systems and nurses moving about.  I sang to my child while surgeons stripped her delicate legs of their skin. I found comfort in clinging to my husband in a twin bed at the hospital.  I learned to pray harder and deeper than I knew possible.  I was shaken to my core and scared to death of what my year and entire life would end up being.   We were robbed of the Spring months and all the optimism the new blooms usually mean to me.  You left wounds to heal in my soul and all over my baby girl. 

 But you let us keep her. You showed me real fear and anguish, but from that nightmare, you also opened my eyes to something more precious than I can ever fully describe.  I witnessed the good in people and true, raw beauty and love. My ears heard some of the most powerful prayers ever said, all in the name of Harlow. I was touched emotionally and physically from family and friends, to mere acquaintances and strangers. I made connections and lifelong relationships with nurses and doctors. I learned the importance of patience and waiting on things we value most. 

I watched in awe as my baby learned to walk, without a portion of one heel. I played with my family in the sand and experienced the beach through my daughter's giggles and squeals. 

Then you took Frank.  And I was so angry.  Why would you put us through so much in such a short time?  Why wouldn't you give us a freaking break?!  

You were kind to many and cruel to others. 

 

You gave people I adore happiness, success, love and babies and yet you took them away from others. You ripped life from us and gave it back. You lifted my spirits higher than they've ever been and drug me down to the darkest depths.  I was hopeful. I was hopeless. I lost my faith. My faith was strengthened. I worked hard. I slacked off. I was angry. I was thankful. I was cursed. I was blessed. I was lost. I was found. 

   I'm ready to say goodbye to you.   I thank you for keeping me whole. For keeping me humble. For letting me remain a mommy.   For weakening and strengthening my faith and marriage. For showing me I can make it through and still smile back at you. I hate moving forward without our Frankles, but have to.  He is the only thing I hate leaving behind with you.  I fear you. I love you.  I appreciate you. I will not miss you. I needed you.  But now you and I must part ways.  Goodbye 2014.  Please tell 2015 to continue to beautify all things in my life and be kind to us all.  

Bah Bye....

Things that could disappear forever and I'd be totally cool:

1.  Acronyms.  All of them!  No exceptions. No "well, this one is okay".   I mean it.  Are we so busy that we can't spell out the actual words or phrase? Are our phone bills charging for every single letter we type, so we are just being financially savvy?  Or is it a mix between trying to hip and laziness?  Either way, I would love for all the "LOLs, IDKs, SMHs, TIAs, LMAOs" and all the others that I'm positive I don't know what they actually mean, to vanish into thin air.   My sister is a literature teacher for 7/8 grade.  She receives papers that contain acronyms, explanation points at the end of EVERY sentence, and wait for it...smiley faces.  I fear that the younger generations will be illiterate, due to all of this.  My daughter is a part of the "younger" generation. What if she only speaks to me in acronyms?  It'll be a huge language barrier. FML.  (I kid, I kid).

2.  Smocked clothing for babies/toddlers/anyone.  I know this look is very popular amongst the Southern states.  I was born in Berkeley, so my parents probably dressed me in bell bottoms and fringe vests....but I will happily take that.  I guess I just don't get all the rage around everything smocked and monogrammed. Is it precious to have some things with your baby's initials on it?  Sure. I admittedly have at least one blanket and a couple of head wraps with "Harlow" or "HTJ" on them.  I am just confused by those wanting to sew it on EVERYTHING!   When Harlow was about 5 months old, I bought a smocked 4th of July dress. I had a weak moment.  It happens to the best of us. Of course she looked adorable in it, but I think she could wear a burlap sack well. Looking back at pictures of that holiday, although she was clearly dressed for the occasion, I'm puzzled as to why I wanted that for her in the first place.  I'm not Southern or preppy. I swear I'm not some judgmental asshole, so please find the humor in this and don't get offended. I have friends who only dress their kids in smocked outfits.  It's not like I hate them. (The children not the outfits). Maybe it's just an overwhelming look for me, personally. To each their own.  I dress my daughter in mostly gray and black and buy lots of her stuff from the boys' section. I'm sure some people don't particularly like her wardrobe.  Perhaps it's more of the boys in those John John overall/apron things that make my skin itch.  And there is one for every season, holiday, and sport. Nothing says, " I love the NFL" quite like a baby blue John John with footballs sewn on it.   But as I said before, to each their own. At least now you know what NOT to buy Harlow for her birthday. 

3. Ebola.  I know, I know. You're probably just as sick of hearing that word as I am. Is it rare?  Yes. Is it scary? Of course. Do we wish it had never been brought into the United States, specifically Dallas?  No doubt about it. However, I guarantee that with the exception of those who think vaccinations are the devil, if an Ebola vaccine came out tomorrow, nearly everyone would get it.  However, there ARE vaccines available for other sicknesses...like the flu and people have no interest in getting them. People don't seem to understand how dangerous and life threatening the Flu can really be. Someone made a joke that more people have been married to Kim Kardashian than have died from Ebola in the U.S.  I rest my case.  Take precautions, wash your hands...but please don't go buy a hazmat suit.  Hey Ebola, thanks for the panic.  You may now exit stage left. 

4.  Selfies.  I'm sure I'll get a lot of hell over this one, but it's just got to be said. Enough already.  Especially the ones with you in your car.  Although I'm proud of you for wearing your seatbelt, I'm miffed by all the duck faced, personal phone pictures that are taken and posted on the daily. Maybe I'm just unlucky, but I have never felt obligated to snap a picture of myself while driving. I'm just not that hot.  Unless I'm sending a photo to a friend to show her my new hairdo or the fact that I chipped my tooth, I just don't understand. 

5.  People that don't wave when you let them into your lane in traffic.

6.  People that don't thank you for holding the door open for them. 

7. People that jaywalk and then take their sweet ass time.  

8. Terms like "bestie" "whatevs" "obvs" etc.   

9.  People who lack elevator etiquette. It's an unsaid rule that you allow people to exit the elevator before you try to get in.

10.  On that note, people who must push the elevator button after its clearly lit up. I don't make it a habit of just standing in front of the elevator and guessing when it will finally come down to me. 

11.  Ungrateful people. I feel I have always be thankful and well aware of the many blessings in my life. Those who feel they are simply entitled to everything, make me sad. 

12.  Being rude to waitstaff, nurses, clerks, basically anyone who is helping you. How you treat someone says so much about your character. 

13.  The traffic and construction on 635.

14. April 1st and the 7-8 weeks or more that followed. 

15.  People that don't put their shopping cart back. It's not that far. 

16.  Overly loud phone talkers. Not everyone needs or wants to hear about how your date last night sucked. 

To be continued. Please add on to this list with me. 

Just A Dream

I swear that at some point, my posts will go back to being the random, funny ones they used to be...but for now, I just write whatever pops into my head.  I feel lots has been weighing heavy on my mind as of late.

Through the wonderful world of Facebook, I was introduced to a book.  You know those creepy, stalker type ads that suddenly show up on the side of your Facebook page?  Clearly we are being monitored, as the second I buy tampons, I receive ads about Essure or Midol. This particular ad caught my interest, as it was about a book a mother wrote, regarding the loss of her child.  The title is, "Rare Bird" and for some reason,  I felt drawn to read it.  Now I know I am fortunate and did not lose my child, but that didn't take away the strong urge I had to buy it and peruse it's pages.

Once it arrived, I quickly began reading it. As expected, it was loaded with religious information and yet contained so much raw emotion and real ness. I haven't even finished it yet, but I instantly felt a connection with this woman and her story.

Then the dreams started.  For several weeks now, I have had several similar dreams at night.  Some at nearly faded memories of our time in the hospital, but there is one in particular that has been scaring the hell out of me.   In this dream, all the days and time since we were discharged from the hospital on May 8th, up until today, have been a dream.  I've made it all up.  I have simply imagined what our life would look like and how the next few months would have played out.  In this dream, Harlow did not beat the odds. I wake up and none do these past 6 months has really happened. I'm still in the hospital and the news of her passing is still fresh and intense.

I hate this dream.  I hate it because it scares the living shit out of me.  It makes the alternative and possible outcomes too real for me. It makes me feel guilty for thinking I am allowed to be relieved that my daughter dying was just a dream, when so many other parents cannot wake up from their nightmares. It makes me question why I was spared such tragedy, but not for one second willing to give it back.

I'm not sure if I'm entitled to feel some sort of PTSD from the whole Harlow deal.  So many others have faced far worse and never admit to their suffering.  Who am I to think that what I am now experiencing deserves such a strong aftermath diagnosis?!  Maybe what is happening. To me is simply the grief seeping out.  Finally.

Last night, Blake and I made the very unwise decision to watch the movie, "Fault In Our Stars."   WARNING:  if you are having a crappy year, do NOT watch this!  If you are having a fantastic year, do NOT watch this.   The story is based on a teenage girl who is dying from cancer.  Not at all my situation, I know, but so many parts of the movie touched too close to home. The mother crying, saying how if her daughter died, she wouldn't be a mother anymore.  Gulp.  I said those same words in the hospital and felt the same feeling.  Different circumstances, but the same fear and anguish of that possibility. Again, I am not putting myself in the same category as those who have lost their child.  I don't want to. The days and weeks of uncertainty were plenty for me and although we got off easy, it was enough to make me fully aware of the consequences.

Harlow has been taking steps on her own. Not full on walking yet, but every day she is getting more confident.  Some days she will try over and over again. Other days, she doesn't even entertain the idea. But it's progress. I'm so sorry for all those parents out there who never get to witness the aftermath.  Who never get to relish in the second chance.  Who never get to wake up from the reoccurring nightmare of  losing a child. Is my life a dream life?  No way. But I am humbled, afraid and very thankful that when my sleep shakes me to my core, I get to wake up and realize, it was just a dream.