Before your baby is born you have all sorts of hopes and dreams for your child. For me, I had day dreams about my daughter running around, playing tee-ball, and being excited about getting her toe-nails painted. I wanted my daughter to be super smart. So I was going to buy her "my baby can read" off the TV. I was going to teach her, her ABC's and how to count. Give her a real head start before going to school.
When I was 34 weeks pregnant that all changed for me. I had a sonogram done and the tech noticed something wasn't quite right with Serenity's head and brain. Her head was measuring 39 weeks and her brain had more fluid in the ventricles then it should have. After having another sonogram done at a higher level and having it done by a specialist they sent me for an MRI and blood work.
The doctor had me come in after getting the results of the MRI. He said that she has Agensis of the Corpus Callosum. My first thought was "What is that?" The doctor explained to me that this meant the piece of the brain that connects the two sides of the brain was missing. In Serenity's case it was partially missing. The doctor handed me a packet of information and said "Do you have any questions?"
My thoughts were racing and I had a million questions. But my eyes were red and full of tears. All my brain could come up with to ask was "So how is she going to be? Is she just gonna have behavioral issues or is she going to be in a wheelchair drooling on herself?" He told me he couldn't answer that question and we would know more when she was born. My thought after that was "Then what the hell was the point of asking?"
For the next 3 weeks I tried to imagine having a child with special needs, but I really had no idea what to expect. Not to mention I was in total denial and really wanted to believe that my baby was going to be fine, "normal", and able.
When the day came to have Serenity my fear was overwhelming. I had no idea what to expect. My sister Danielle said (who was my savior in the delivery room), Serenity was not even fully out yet when they told me to look down. That's when I came out with "Are her eyes far apart?" Of course my sister told me not to worry about that and she was beautiful. When Serenity was born she was not breathing and had no color. The doctors cut her cord and rushed her away to another area of the room to work on her. I repeatedly asked why she wasn't crying. Of course not one of the 5 doctors or 6 nurses said a word. What felt like an eternity later my sister said "Did you hear that?" So I listened, everyone was silent. I swear my heart stopped in that moment. I heard this very faint not cry, but noise. It was my baby and she was alive.
Over the first year of her life I learned so much. We saw so many specialist, I spent a lot of time learning the ins and outs of her brain, her organ issues, and other issues that are present.
I saw a lot of those hopes and dreams I had for Serenity go into a much different direction. Instead of running, playing, tee-ball, toe-nail painting, ABC's, 123's, and reading. It was more like holding her head up, sitting on her own, saying "Momma", reaching for and picking up toys by herself, and an ultimate goal of walking.
Serenity is two, She does not sit on her own, she can not walk, she does not talk, she does not pick up toys and play. Does it upset me? OF COURSE! Not because she can't do those things, but I see other kids her age and I hate that she's so limited. Like any parent I want the best for my child.
It absolutely breaks my heart that instead of he crying from skinned knees, she's crying because she was just stuck with 5 needles and had too big of a catheter shoved up her pee hole. It breaks my heart that all I can do is hold her and cry right along with her and tell her I am so sorry.
When an able child is sick you get the medications your child needs, you make them rest and they get better. With a disabled child or at least in Serenity's case she won't ever get better. Her genetic syndrome is a progressive disorder that will only get worse. Her seizures will never end. Anti-seizure medications only work short term and you have to switch medications and gamble. Never the less, in the mean time I watch my child seize and all I can think of is.. "Is this going to be the last?" "Is this going to be the one that she doesn't come back from?"
A lot of people don't realize how dangerous seizures can be. During a seizure your heart rate sky rockets putting you at high risk for cardiac arrest. With all of the medications that usually need to be pumped in to get the seizure to stop, that also puts you at risk for cardiac arrest. Did I mention that if a person seizes too long they could potentially go brain dead? In a nutshell they are life threatening and extremely scary.
Serenity is at risk for so many things. Her seizures and her ever growing tumors are only the beginning. Her organs also have issues and she's at risk for pulmonary embolism.
Everyone says that I am such a good mother because I completely dedicate every second of my life to Serenity, but honestly how could I not with everything she has going on?
I won't say that Serenity's days are numbered, but she's certainly not promised tomorrow. Every moment that I have with her I am going to take it for everything that moment has.
Thank you for reading.. -Kara
