I can’t help but starting off this post with..
This time last year I NEVER thought we would see this day.
The day before Daphne’s 1st Birthday we were in San Diego visiting one of the ‘IT’ doctors in Mito who delivered crushing and heartbreaking news to us.
As hard as it was I was determined to celebrate Daphne’s 1st Birthday, not knowing if she would live to see another one.
This year has been the hardest year of my life. I have been through a lot in my 34 years, more than most and trust me that is not bragging I wish it was less but it has made me who I am now and has taught me many valuable lessons, the most important for our current life, is how to fight for what you believe in, speak the truth and the facts and the rest will fall in line. A saying that I have been saying for years now in my job (a world of disbelieving men that I constantly have to battle with) “Prove me wrong, it will only benefit you if I am wrong.” My intuition and knowledge is usually spot on.
Back to the Birthday Girl.
Her day looked like this:
She woke, in bed with Rich and I angry because she missed her 1:30am feed so she took 6 ounces.
Got dressed in her Unicorn 🦄 outfit and headed to PT (I made her skirt)
Then breakfast in the car with me, a mini photo sesh waiting for her doctor’s appointment (the light was just beautiful, no filters here).
Can you see the 2 year old behavior 😂
Then at the doctors office hopefully we got the answer to all the sleepless nights….Sinus Infection.
Poor kid but hopefully the meds work and she gets back to her. She has been running a low grade temp almost everyday, fussy, not eating well, NOT sleeping well at night and congested but not in her lungs for weeks so this is the next step. It has been over 2 months since she was on an antibiotic and that is a pretty big deal!
Then Daphne went to her babysitter who greeted her singing Happy Birthday, she was all smiles.
In the afternoon she had a followup at her Neuro-Opthamologist, poor kid got dilated.
We rounded out the evening with dinner at IHOP and presents. Her favorite is her Mini mouse 4 wheeler from Adelaide.
As I write this I remember we forgot to sing Happy Birthday, light her candles, eat cake and give her, her trampoline. Tomorrow will be a little continuation and a picture in front of the Unicorn photo wall I made from Pinterest (forgot that too and it’s been up since last week 🤦🏼♀️)
A friend helped decorate this cake which she did great but it still was a Pinterest fail and moments after I put it back in the fridge it fell over! I tried!
What it was supposed to look like:
What it looked like 🙃
She gets to start tomorrow morning off with bloodwork😢.
The life of a Mito baby 🙁
This sweet and spicy girl is loved more than she will ever know. I spent most of the day crying yesterday and cried myself to sleep, not sure if it was over the thought of her turning 2, that she has lived to see 2, that she is getting closer to being identified as special needs/not ignorantly identified as a baby that is much younger than what she is or the thought of not having her one day (something that haunts me daily 😔), I am pretty sure it was all of the above.
I keep telling myself to live in the moment and take it all in. I do, I really do but it’s time when I am rocking her and she stares up at me and just gives me that sweet little rotten look but also that look of being so pleased to hear me singing or humming that I just fall apart. I will never regret one tear I shed over her or Adelaide but geesh I thought a year later things would be a little easier, a little less painful but it seems like just yesterday it all happened.
xoxo from one grateful but heartbroken mama