Saturday, July 25, 2009

Today...

...is turning out to be a tough day. I don't know why. It just hits me from out of nowhere! It guess it is to be expected though. I just want to go back to bed and forget that my baby girl is gone. I am gonna try to make it to Mark's gig tonight. I think I will go after they play Karissa's song, a song that was written just after she died. I don't think I could make it through. I don't feel strong enough today.

Today is one of those days where I just want to close the door to her room and take down all of her pictures. It is one of those days where I would rather have her back, broken, then have her gone, healed and whole, with no pain.

Today I went into her room and opened her closet. I smelled some of her clothes. They don't smell like her any more. I looked at her shoes. Untouched since I put them away on July 7th, 2008. I thought I was almost ready to go through her room. Guess not. That's all for today.

Thursday, July 23, 2009

3 Places. Part 3

Number three: Church

This is the place that I referred to in Part 1 as the 'almost.' This is a hard one for me to talk about. My thoughts may be a little disjointed. I will try my best.

I have been to church probably about a half-a-dozen times since Karissa has been gone. I know people judge me for not going to church. I know people talk. I know people see Mark at church without me and make all sorts of speculations. I can imagine conversations going like this: "Pray for Adrianne, she's not going to church", or "Pray for Adrianne, she must be not be doing well because she is not involved in church."

I have tried to go to church. There have been several times where I have walked into the sanctuary right before the service is to start and turn around and walk right back out. I freak out. I don't know why. Mark and I have talked about it but I can't seem to figure it out.

The truth of the matter is, I don't feel that one needs to go to church to have a strong relationship with Christ. Being in church is not a reflection of your relationship with Christ or an indication of how strong your faith is. I don't think it is right for people to make assumptions about your faith based on your attendance at church. But that is just how I see it.

Since Karissa has been gone, I feel that my relationship with Christ has only gotten stronger. If I didn't have a relationship with Him I would probably be in a nut house. My faith is the only thing that sustains me. I can't even fathom going through such a tragic loss without Christ. The hope of spending eternity with Him and knowing the I will be reunited with Karissa one day is what keeps going.

I will be back, eventually. I know that for certain. Just don't know when.

Wednesday, July 22, 2009

3 Places. Part 2


Number two: Albertsons

The one in Redlands on the corner of Cypress and Fern. Can't go in there. Unlike Target, I can, however, go into an Alberstons at any other location in the world. I know, it is just a silly little grocery store. Just a place where you go to buy groceries. I guess it just goes back to the idea of routine. I miss my girl. I miss our routine. I miss what life used to be like before she was gone.

As I sit here writing this, I can recall all the times when I would literally run down the aisles, pushing Karissa in the shopping cart and then suddenly stop! STOP. GO. STOP. GO. She loved it! She would just giggle and smile. Her perfect crooked little smile. I miss her smile. Sometimes pictures just don't do justice.

I would also try to get her to make choices at the store. Karissa had difficulty with her fine motor skills so pointing at objects was quite a challenge for her. I would hold two objects out in front of me and she would just hit the item she was interested in. Hitting was her way to show interest in things. She never hit hard though. But, I was always so proud of her in how she expressed, in her own unique way, what she wanted.

Anyways, I guess I don't really expect anyone to understand what I am trying to say in this post. For you, it is just another building, Another place. It probably may seem silly to you that I can't walk into a silly building. For me, it is a place that memories were made during every visit. A place that hurts to much to go back to without my girl.

Monday, July 20, 2009

3 Places. Part 1

It has been a little over a year and there are 3 places, well almost, that I have not returned to since Karissa has been gone. Each place was part of our weekly routine. Sometimes we would visit 2-3 times a week if needed.

Number one: Target

Karissa and I went to Target (I know, who doesn't go there) on a weekly basis. Sometimes we would go even twice a week. I LOVED going to Target. I loved going with Karissa. We would always go in the morning to avoid the crowds. It was part of our little routine. I made my list and we were off. Karissa was my little shopping buddy. She was always so good when we shopped. Never made a fuss. Just liked to hang out with me. Content and happy. I was so blessed.

Mark and I went to Target right after Karissa was born. I think she was 3 days old. I remember how proud I was to carry my new baby in the sling/peanut shell. I never bothered with carrying her in the car seat or putting it in the shopping cart. I think I did that once. I hated having her in the car seat when we shopped. I was always 'wearing' her. I wouldn't have it any other way!! That day we bought 'The Boppy.' I wanted it to make nursing more comfortable.

A week before Karissa was to start in her special day class, my sister, her Aunt Chelsea, took her shopping for some clothes. Karissa had just turned 3 years old. My sister spoiled her that day. So special. Shortly after that, my mom-in-law and I went back to buy Karissa a few (ok, more than a few) more clothes. I wanted to stock up for the summer!

The very last time we went to Target with Karissa was when we were on our vacation in La Quinta. It was 8 days before she died. It was a Monday. We were with Mark's parents. I still have the receipt from our last outing.

A year later, I still have not set foot in Target. I have such good memories but yet I cannot bring myself to go back.

Up's & Down's

Since a year has passed since Karissa went to heaven, I have had many more up days than down days. It is quite surprising to me and really just hard for me to explain. I know Mark gets it though. I don't even have to explain it to him. He just gets it.

Mark asked me just yesterday why I haven't been writing on my blog lately. My response was that I haven't been as sad lately. Thinking more about it, I tend to write when I am sad or missing Karissa more than usual. It helps. A lot.

So now you must be thinking that I am probably having a rough day today because here I am, spending time on my blog. But really, I am not doing too bad. I just want to write, for Karissa. I want to write for Epilepsy Awareness. I want to write so that maybe someone else may be encouraged through my words.

Saturday, July 11, 2009

No IV's. No Tubes.

Sometimes, when I think back to the morning of July 8th, 2008, I think about how it could have been much worse. Of course there is nothing worse than finding that your child has passed away in her sleep. However, there are a variety of scenarios that play out in my mind, scenarios that make me thankful that everything happened the way it did. Here are my thoughts...

Shortly after Karissa passed away, I started working part-time. Some of the patients I worked with would come to the clinic every other week. There were a few that I really enjoyed talking with and getting to know.

It was right before Christmas and one of my patients asked me what my plans were. I struggled with whether or not I should mention that I was dreading the idea of Christmas without my daughter. I just mentioned that my husband and I were going to be spending Christmas in Manhattan and that this year was going to be quite different for us. For whatever reason, my patient could sense there was something wrong.

I ended up telling her all about Karissa. She was crying. That is when she told me that her grandson had recently passed away at the age of seven. He was mentally retarded and had seizures. She said he was hospitalized and had a breathing tube, ect. She told me it was heart-breaking to see her daughter and son-in-law go through so much pain. That the decision to let him go was agonizing.

I remember her taking my hand and telling me that she was glad that I didn't have to go through the same thing that her daughter had to go through with her son. That is was a blessing that Karissa had passed away peacefully. No tubes, no IV's, no decisions, ect... Then she prayed for me.

Sometimes I wonder why, on the morning of July 8th 2008, I didn't wake up out of a sound sleep like I usually did and run into Karissa's room when her seizures started. It is all clear to me now. I am so thankful that I was spared from the possibility of having to call 911 and having the paramedics 'work' on my daughter. I am thankful that my last memory of Karissa was not one where she was hooked up to IV's and breathing tubes.

Other scenarios that I have thought about are what if I had found Karissa after Mark had left for work? What if we had to give her CPR? Or even worse, what if I was alone and had to give her CPR? What if Mark and I were on a vacation without Karissa? What if it had happened at school?

I will always remember how she looked when we said our last goodbyes. She was beautiful. She looked angelic. I wouldn't have wanted it any other way.

Wednesday, July 8, 2009

July 8th, 2008

I know I have already posted this blog but I wanted to post it again because it captures the feelings and emotions of July 8th, 2008 so well.

The past few days have been very emotional for me. I figure it is because the year anniversary of Karissa's passing is rapidly approaching. As I think back on that day, there are so many things that run through my mind, like a quickly moving film. Everything is still so very vivid in my mind. There are things that I would much rather forget and things that give me so much peace and hope.

One of the things that sticks out in my mind is the phone call I made to my dad that morning. It was the first call I made. The first words out of my mouth when he answered the phone were: "my baby's dead, my baby's dead, daddy, my baby's dead." I can't tell you how many times I repeated that phrase. I was screaming so loud, I am quite certain that anyone passing by the house heard my screams. That is one call I wish I could forget.

Another thing that is so vivid in my mind is when Mark and I went to say our final goodbyes to our little angel. We had to wait 3 hours or more before we could go back into her room. It was agonizing to say the least. We walked into her room and I picked her up and just sat on her bed rocking her and holding her tight. She was so cold. I took her little ladybug blanket, one of her very special blankets, and wrapped her up, knowing full well that it would not do a thing to warm her little body. I remember rocking her and Mark and I crying and saying how much we loved her. I remember saying that it was going to be ok because she didn't have to have horrible seizures anymore. I remember how grey she looked but so very beautiful. Oh my gosh, she was gorgeous with her long eyelashes. She looked like an angel. She looked so peaceful. That makes me happy.

Tuesday, July 7, 2009

The day before...

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.

Monday, July 6, 2009

Firsts and Lasts

As parents, we anticipate and are overjoyed by our child's "firsts." First steps, first words, first smile, ect... I journaled every "first" that Karissa had. I kept a calendar and marked it all down so I wouldn't forget all her important milestones. I was so excited when she hit a milestone! I love to scrapbook and I even created a 2-page layout that captured some of the big first's of Karissa's life.

Lately though, I have been focusing on all the "lasts." The last time I went to Target with Karissa. Her last bath, last meal, last play date, last walk, last pair of pajamas she wore. I remember the last time I went to the grocery store with Karissa. I can recall every single item I bought. It makes me so sad.

I find it very ironic. Shortly after Karissa died, I started writing down everything we did in the last week of her life. I kept a very detailed journal. I didn't want to forget anything we did. Just as I never want to forget all of Karissa's "firsts" I never, ever, want to forget all of the "lasts".

Thursday, July 2, 2009

July 4th, 2008...A day I will never forget!



The type of seizures that Karissa had were in the temporal lobe of her brain. One of the main functions of the temporal lobe are speech and language. This may explain why, at the age of
3 1/2, Karissa only had a few words. She was still saying "dada" and "mama"; her speech was still like that of a baby just learing how to talk and babble. Every once in a while a word would come out of her mouth from nowhere. Clear as day. We always rejoiced, sometimes even cried! However, it was never consistent.

The main way we communicated with Karissa was through signing. She was a pro at signing "more" and "eat." Even though we tried to use a variety of signs and made them a part of our daily routine, those were really the only signs she used.

A year ago today, we were on our last vacation with Karissa in La Quinta. I remember the day so vividly. We were just hangin' out in our room. Mark and I were both reading and Karissa was playing. Out of the blue, Karissa says, with perfect clarity, "Momma, it hurts me. I love you."
Mark and I looked at each other with both of our jaws dropped to the floor. Wow! It brought tears to our eyes.

It is hard for me to look at the pictures from that vacation for 2 reasons. First, it was our last vacation with our daughter. Second, looking at her, you can see that she hurts. She looks like she has the worst headache in the world. It breaks my heart.

I thank God that He gave Karissa those words that day. It was truly a gift that will last a lifetime and one that I will cherish forever!

Wednesday, July 1, 2009

Blame

Mark says I blame myself for Karissa's death. Blame. Isn't that part of the grieving process? I honestly can't remember. But yes, I do blame myself at times.

As mentioned in a previous post, during the last month or so, Karissa's seizures were getting much worse. She would go about a week or so and then have another bout of seizures. I remember on one particular Friday in June, when returning home from the neurologist, she had a terrifying seizure in the car (see post titled "Silence"). I didn't contact the neurologist like I should have. I still beat myself up for it. I think, "well, if I had informed the neurologist, maybe she would have changed her meds or maybe she would have started or added a new med to her current regimen. Maybe that would have saved her life." Or I think, "she probably died from hypoglyecmia or dehydration as a result of being on the Ketogenic Diet. We should have never had her on the diet."

I go through days where I think too much or dwell on stuff like this. I could drive myself crazy just thinking about the 'what-ifs.' I am selfish and I want her here with me. That is when I start blaming myself and start thinking of all the things I could have done differently that could have prevented her death.

BUT,
I know that Jesus wanted her home with him. It couldn't be more clear to me. Crystal Clear! My prayer that she would be healed and have no more seizures was answered the night before she died. She is in a better place where she is in no pain. I am confident in the fact that I will see her again. That is the hope that I cling to and go back to time and time again. That is what silences all my thought and doubts.