July 23rd - The day our dream died

I hope that this is indeed the hardest post I have to write. This day was by far the worst day of our lives, to date.

I have had a few panic attacks over re-living this doctor’s appointment. Now when I say panic attack I mean I start to feel tight chested and can’t breathe, that feeling takes a while to go away. I tear up and sob. And I just feel totally out of sorts and shitty afterwards. I am in tears re-living this as I write but so far after I have written the other blog posts I have felt better and almost like they are in the past now and I can move forward. I really hope that it is the same case with this post.

In a nutshell to get you up to speed - C suffered from HIE, which means before, during, or after birth she was deprived of oxygen/blood to her brain. She was in the NICU for two weeks. To read the details check out the March 9th post.

On Thursday July 23^rd I woke up and took conference calls with China from home. C had her big appointment today and I had told my manager I may or may not be in the office later that day depending on the results. We had  a list of topics written on a post it to ask the doctor 1. Could she have microcephaly? 2. Can we start to try and wean off the Keppra since we didn't see any seizures, she seemed more alert when the dose was late or lessened. 3. Could the “mastoid blah blah” have affected the hearing tests and can be treated therefore helping her hearing. 

We expected the MRI results to be the same as before, something generic like oh there is damage but it is what was expected and we don’t know anything. So up until our 10am appointment we thought C would be behind but could be somewhat “normal”, she might have a smaller head but lots of kids do and are fine in the end. She might need physical therapy but she would walk and play with the other kids. She might need the hearing aids but she would enjoy music and family singalongs. She might not go to a fancy school but she could go to a community college and get a minimum wage job and live by herself.

At about 10:15am our dream for our daughter died. Our world was hit with a nuclear bomb. Nothing we could have ever imagined. The neurologist even said he was shocked with the results.

He came into the room and asked us how she had been doing. We told him of her progress and how she had been doing awesome with Nora for Developmental Therapy. That she still doesn’t look at toys or socially but she definitely locks eyes and looks at things sometimes. He then asked if we were visual people and wanted to see the MRI scans because sometimes it helps people to understand, we said sure as we held our breath.

He came back into the room with the laptop, Scott was holding C and I was holding the note with our questions. He showed us the brain scan from the bottom to the top. Starting at the bottom the brain stem was in-tact. The cerebellum was in-tact but there were a couple areas of damage that he pointed out as being the dark areas, they were filled with fluid. He said from here it is all the same, dead matter that has been filled with fluid. The temporal lobe, gone. The Occipital lobe, gone. The Parietal lobe, gone. The Frontal Lobe, gone. Here is a diagram to show the lobes and what functions they have for a normal person.

We were in utter shock. I am also still shocked that he can give this type of news without a counselor or someone in the room. He said C will never walk. She will never crawl. She will never sit. She will never talk. She probably can’t see or hear because the part of her brain that would process that information is gone. So she might see darks and lights and startle to sound but that is it. She may smile one day but probably not.  We can’t tell but she most likely does not have a consciousness. After what felt like forever in silence not knowing what to say or do I asked well what do we do next? And he said that all we can do is make her comfortable. Scott asked if it was even worth using the hearing aids, Dr. Z said well they can’t hurt but if they are a bother then just stop. She would have severe cerebral palsy and he officially diagnosed her with that.

So basically she would be a vegetable and it is pointless to do anything other than make her comfortable?!?! The doctor said I’m sorry, please schedule an appointment in 3 months, patted us awkwardly on the shoulders, walked out and left the fucking door open to try and get us to leave sooner than later! Scott shut the door and said what are we going to do? What the fuck are we going to do? What are we going to do? I told him that we needed to go home and offered to drive but he said he was fine. I was not going to lose it in a doctor’s office because I knew it would be hard to gather myself once I let go. We had to go to the front and wait in line to schedule her next appointment. Scott drove and when we got to a stop light he started to sob. I told him if he was going to cry to pull over and let me drive because we have to get home, we can’t get in an accident. Again, blows my mind that they have not been sued from telling parents their kid is going to be a vegetable and that all that can be done is to make them comfortable and then just having them leave and drive!

We got home and started a bottle for C and both lost it. Our daughter wasn’t going to play with kids, have friends, go to dances, I wouldn’t be able to play dress-up and teach her about makeup. I wouldn’t stay up worrying about what she was out doing or about boys. I wouldn’t be able to teach her to be a strong woman who didn’t put up with bullshit and spoke her mind. Scott wouldn’t be able to walk her down the aisle and dance with her at her wedding. She wouldn’t have babies and need our help like we needed our mom’s help. I lost my future best friend who would always be there and would help to take care of us when we were old. What was E going to think? He's not going to have a playmate or a sibling really. How are we going to explain this to him? Essentially, C had just died. Our baby girl died. I know that is not true, but that is what it feels like.  We were just told she would be a lifeless vegetable, we would have a roommate and need to take care of her for as long as she lived.

We are not religious people, and it actually makes us angry when people tell us about it being god's plan. But my mom said something that really hit me and Scott. My mom is a special education teacher and has been one for years. She said “maybe god put me on this path, to be in special education for all these years, to be there and help take care of C”. My mom was supposed to come the following week to visit but she changed her flight and came down the next day. By then we were a little better but still in shock.

E couldn't sleep that night so I let him sleep in bed with me. I am also now terrified for his safety one million times more than the day before. I laid in bed choking back tears, thinking about the future, as he laid next to me sleeping.

C is still the same C as she was before 10:15am on Thursday July 23^rd. She is still progressing with therapy and we see improvements. She definitely can hear, her vision seems bad but she seems like she can see sometimes. We almost think she can’t see and hear at the same time, like her brain cannot process both. I didn’t go to work that afternoon and worked from home on Friday, I didn’t want to lose it in the office when someone asked how the MRI went. I asked my manager to tell the few people I told about the MRI not to bring it up to me. I told my manager everything, I think he needs to know what is going on, the full extent and he has been very supportive. I told friends and people who have been following C’s progress who I know will be my support system and there for me.

A now dear friend L sent me this poem. http://www.our-kids.org/archives/Holland.html

I have read it almost every day since  and I get choked up at the 2^nd to last line  every single time. “And the pain will never, ever, ever, ever go away…. Because the loss of that dream is a very very significant loss.  But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland”

 Both Scott and I plan to get Holland theme'd tattoos someday. For me, a tulip, probably on my wrist so I can be reminded each day. For him a windmill next to E's owl tattoo.

Oh this same day, our house in Austin finally went on the market after weeks or very stressful work. Scott's dad was a hero and helped us tremendously to get things done and the house on the market.

I took this picture that day, she is so perfect.