A change of plans

A few weeks ago we found out that we will be having two boys, not the girl and boy we were initially expecting. After we were told the second baby was a boy, I went completely numb. I really don't remember anything else that happened during the ultrasound. I am still trying to process the fact that I will be having two boys. I cannot quite wrap my mind around the idea. I am still hoping that when I go to deliver my babies, I will pop out a girl.

Just to give you a glimpse into my mind, this is how I am processing things:
I have prayed from the very beginning of this whole process that I would get pregnant. After 2 failed attempts, we were successful. I prayed for twins. Again, my prayer was answered. I have prayed every day since the day we got pregnant that God would protect the little lives growing inside me. I prayed specifically for each of their developing hearts, brains, kidney, and please dear God no seizures. At our last ultrasound, we were told that we have two healthy babies. More answered prayers. I know I have no right to complain. I know I am truly blessed. I realize that it is a miracle that we are even pregnant to begin with. Everyday I am constantly reminding my myself that God is the only one that knows what I need. He has a knowledge of things way beyond my understanding. That is how I am processing things at the moment.

Anyways...

While nothing or no one will ever replace my sweet little Karissa, I had imagined that having another little girl would be like having a little taste of Karissa back in my life. But, maybe having a girl would be harder than I would expect. I had planned to use Karissa's things for her little sister. But, as I am slowly sifting through her things, I don't know if I could actually use them. I don't know if I could bring myself to wash her things for her little sister to use. So, maybe it is better this way. I don't know. My grieving heart is so full of emotions.

Anyhow, here are the long-awaited pictures.

~Baby A~

~Baby A~

~Baby A~
~Baby B~

~Baby B~

~Baby B~

~Both Babies~

The day before is the hardest. I don't know if it is the anticipation of the anniversary or what. Last year on the 8th, I don't think I shed a tear. I know that sounds just awful. It was the day before that I was an absolute mess, for both Mark and I. I never knew two years ago would be the last time I would give Karissa her bath, wash her hair and put her in her adorable pajamas. Or read her Goodnight Moon and rock her to sleep. Or tell her to turn off her light. I loved our nightly routine. That is partly why the day before is so hard. It is filled with memories of my little girl and things that I will never get to do with her again. It was the last day she was alive and full of life. Her last day on earth with us. The last day I would see her smile and hear her babble and play.

Today my stomach is in knots. I cannot eat. I cannot get a thing done. I am just aimlessly roaming around the house trying to figure out what to do. I thought I would sit down and write something but even that isn't working. So I thought I would just re-post an old blog entry.

Blog entry on July 7th, 2009

A year ago today was the day before Karissa passed away. I can recall most of what I did that day. Mark and Karissa left the house at around 7:30 that morning. Mark took Karissa to her special day class which she attended 3 times a week. She was usually there for about 4 hours. We had the option of having her there all day but I was uncomfortable with that. Honestly, I didn't want her to do the full-day thing because I missed her too much. That day she was there for about 7 hours...way too long for me. I went grocery shopping and bought a ton of food. We had just returned home from our vacation in La Quinta and we had nothing to eat in the house. I spent most of the day preparing meals for the week. The house was so quiet that day. It was weird. I missed Karissa and all her precious sounds and noises. At around 1:00 I realized that I forgot a few things at the store. I returned to the store, got what I needed and then drove through El Pollo Loco. I was sitting in the drive-thru and that is when, at 1:21, I called the school to see how Karissa's was doing. Actually, I called every day she was at school to get a report about her day. They said she was still napping. Shortly after that, Mark picked her up. Mark called me from the car and I remember talking to Karissa. She wasn't saying much and Mark said she seemed kind of tired. Anyways, I remember feeling sooooo excited that they were coming home. I actually waited on the front porch for them. I remember running out to the car to get Karissa. I was elated! I had missed her so much. When I got her from the car, I was appalled at what she was wearing. Apparently, they had water play at school and they had to change her clothes. Well, they put some other child's clothes on her by mistake. The outfit was mismatched and the clothes were like 2 sizes to big! Ughhhh! I gave her dinner and did the night-time routine: meds, bath, brushed teeth, bedtime stories and then lights out. We live in a 1906 house with the push button light switches. Every night I had her turn her light off. I was so proud of her when she turned the light off. Karissa had a hard time with her fine motor skills so pushing a button was a BIG deal. I always said "light off" and tried to get her to imitate me. I also read Goodnight Moon almost every night. However, a year later, I can't remember if I read it to her. That makes me so very sad. At around 10:30 that night, Karissa was up and about in her room. That was usually an indication that she was going to have seizures the following day. I still can't recall how we got her back to sleep. That makes my sad as well. I had such a hard time sleeping that night. I remember praying and asking the Lord to heal my baby girl. I prayed that He would heal her from her seizures. I also prayed that He would give me strength and patience to get through the days ahead. Having a child with special needs take A LOT of work. I loved it, but it was hard work! Only those that have special needs children can truly appreciate and understand what I am saying. At around 1:30 am, I went into her room. Sometimes I would go in her room and pray over her. I can't recall if I did that night. Anyways, Karissa had a big therapy pillow next to her bed. It was given to us by one of her therapists to help her improve her balance. We would put it in the middle of the doorway to her room so she would have to walk over it. I crashed on it for about 30 minutes. I was listening to her breathing. I ended up going to bed in the room next to Karissa's. I didn't wake up until around 7:30 the next morning. I thought it was strange that Karissa was not awake yet. That was my first clue that something was not right. I can still remember Mark standing right outside her room, just staring and then he said "oh no." I think he said, she's gone. She was cold to the touch and there was nothing we could do. I remember opening her eyes and looking at them. Don't know why I did that. It is all still very surreal to me.

Painful Process

Almost two years after losing Karissa, I am now starting the painful process of going through her stuff. It's a process, I guess. I am not sure if I am doing it because it just has to be done or because I am just ready. I have to wonder, if I wasn't pregnant, would I still be trying to tackle the emotional and heart-wrenching task? A task that floods the mind with so many memories, some that you want to hold on to for dear life and others that you would rather just forget.

I have had a few friends offer to come over and help me. While I truly appreciate them and am so thankful for friends that would be so willing go through this with me, I honestly would much rather face it alone. Maybe it is my introverted nature. Or the fact that I really don't show my emotional side to anyone except for Mark.

Karissa had two closets, one which had all of her clothes and shoes and the other which I refer to as "the toy chest." Over the past two years (well almost), I have stuffed things in both closets to the point that you could barely open the doors without everything crashing down.

Last Saturday, I started with the toy chest closet. I figured that would be the easier of the two. The first things I started sorting through were all her cups, plates, bowls and utensils. I started putting them in a storage container for later use with the twins. All of her cups still smelled of the liquids I use to put in them. A few even had her name on them, so that they wouldn't get mixed up with the other kids things at church or school. Not soon after did I find myself in tears. I went downstairs and said to Mark "I just can't do this." But, as hard as it was, I continued on with the task.

I am trying to figure out what to do with a lot of her things. It is unbearably heart-breaking to think of throwing anything away. Every item has some memory linked to it, some good, some bad. For instance, I was thinking about throwing away her bath toys. They are gross, especially the squirt ones that harbor so much bacteria...yuck!! But, I couldn't bring myself to do it. Some of her bath toys were put away in large ziploc bags the day she died by a close friend. When I went to grab one of the bags, I noticed a lot of strands of her hair along along with the toys. I couldn't imagine tossing that bag. I feel like I would be throwing away the memories of a daily routine, bath time, that Karissa loved so much.

Or, I came across a few bottles of her anti-seizures medicines. I still haven't thrown them away. Why I want to keep them is beyond me. Karissa's seizures were horrific and heart-breaking to watch, especially as she got older. Why do I want to hold on to a memory of the very thing that took her life?

Going through this process and losing a child has made me realize that people are so different in how they process their grief. One thing that I find interesting is that a lot of people would say this process is 'cleansing.' I have heard it said many time before after one has suffered a tragic loss. "It must have been so cleansing to let go" or whatever which is fine. While many people process their grief quite differently than others, this was in no way cleansing. I said to Mark later that day, "I don't know why the H*** people sometimes refer to this as cleansing, this was in no way cleansing to me!!" Anyways, just my thoughts.

~Before~

~After~

~Meds anyone?~

America's Got Talent - Connor Doran - Indoor Kite Flying

A very powerful reminder that people with epilepsy should never be underestimated or told that they cannot do something because of their condition. This video brought tears to my eyes. I loved seeing the reaction of his mom as he performed. She must have been so proud.

A heart full of emotions

Dear Karissa,

Today we found out that you are going to have a little sister and a little brother. It was so amazing to see both babies, your siblings. My heart is so full of emotions...joy, thankfulness, happiness and sadness...that you won't be able to meet your baby brother and sister.

What I want you to know is that even though you are not here with us, you will always be a part of our family. We are now a family of five. You will never be replaced. Never. We have not taken down any of your pictures. They will remain just as they are, only we will add to them. You will always be a part of this family. We will still remember the day you entered this world and the day you left.

I have had a few people ask me if we are going to tell your siblings about you. Absolutely! Your baby brother and sister will know that they have a big sister, only that you are up in heaven. They will know everything, every detail about you. We will share pictures and videos of you with them. They will know what a sweet big sister you would have been. And when the time is right, they will know how you left this earth.

I hope you don't mind, and I know for certain that you won't, but we have saved all your toys and books for your baby brother and sister. You were always such a kind and giving little girl and I know that if you were here, you would be more than happy to share. Your baby sister will be in your room and your baby brother in the room next to yours.

I know that you were smiling down from heaven today as you saw the joy and happiness on our faces. I only wish you could be here to share it with us. I cannot wait for the day when we will all be reunited again and you will finally get to meet you baby brother and sister.

I love you my sweet little angel.

Love, Momma

Looking for more answers vs. reassurance

A week ago, Mark and I had an appointment to see the genetic counselor. This individual works with the geneticist who saw Karissa a few months before she died. Anyways, the reason for this appointment was because I am considered advanced maternal age. Nice huh? Oh, and I am 35, just in case you were wondering how old I really am.

So, we get to the appointment and the counselor starts by asking us to tell her about our family history, previous pregnancies, children, ect. How did I start the conversation? Of course by telling her that our daughter died of epilepsy. I informed her that she had seen the geneticist who ran every genetic and metabolic test possible. That he had tested for syndromes that are characterized by seizures and developmental delay, such as angelmans syndrome and fragile X, two syndromes for which Karissa had displayed some characteristics. That he was unable to find anything to explain her severe global developmental delay and why she was starting to show signs of regression.

The counselor proceeded to bring up Karissa's chart and noted that everything was normal. Every test that was done from birth to the day she died was normal. A chromosome study was also done and Karissa had the correct number of chromosomes. They even looked at the tips of every single chromosome, called telomeres, and these were also normal. There was, however, a test that was done when Karissa was 2 weeks old that came up abnormal but when it was re-checked a year later, it was normal. Up until our appointment on Monday, I was never made aware that the test was re-checked and that is was normal. Kinda wished I had known, as it would have eased my mind of all the 'what-ifs' that went through my mind (and still do) following Karissa's death.

Karissa had elevated levels of 3-hydroxyisovalericacid which is associated with defects in biotin (a B-complex vitamin) metabolism. I remember the day the neurologist went over the results of that specific test with me. He said something like "her lab value is slightly elevated but it is nothing to worry about. Infants that have abnormal (elevated) lab values don't end up living very long and her lab value is close to the normal value. I am not worried." And that was it. Thanks.

So of course, you can understand when I tell you that after she died, that was all I kept thinking about. Was that how she died? Did the lab value progressively get worse? Did it increase even more? And the worst thought of all...could we have corrected it thereby preventing her death? The answer, according to my research, was probably so. Almost 2 years later, I can now put that thought to rest. I know that is not why she died.

I was going into this appointment with the understanding that we would be informed of all our options for prenatal screening: CVS, amnio, ect... We declined each one, not wanting to risk anything to our unborn babies. Besides, it would not in any way change our decision to have our baby/babies if something was wrong. What I didn't expect was to delve into Karissa's medical history. As hard as it was, I am glad we did. I was always looking for an answer to why Karissa died. Yes, she had a seizure that was so bad it took her life, but what else? What else caused her to regress in almost all areas of development.

After spending almost half of the appointment talking about Karissa, the counselor said that it is very unlikely that our babies will be sick like Karissa. She said that there is a 25% chance that one or both babies could have epilepsy, IF the epilepsy is genetic, which, as far as we know, is NOT! She even went as far to say that she feels as if both babies will be fine. Only time will tell. But at least I got some reassurance from that appointment. I am thankful.

Vivid. Crystal Clear. Memories.

Perfectly groomed grounds.
Bright flowers.
The smell of the air.
The many many trees that lined the walkways with their trunks painted white.
The waterfall.
Sounds of the maintenance people and housekeeping driving by on their carts.
Stillness of the desert nights.
The porch.
The way the air felt as I held you on the porch while you were sleeping.
Splashing in the pool.
The perfect words you spoke to me that I will cherish forever.
The starry nights.
Beautiful mountains.
Discovering your first two freckles on your perfect little face.
The cool tile of the bathroom floor.
The crickets.
Watching you hold daddy's hand as you walked across the street.
Feels like just yesterday you were here and we were enjoying our very last vacation with you.
I want those days back but all I have left are the sweet memories that I never, every want to forget.
I miss you.