Tomorrow will mark the 7th anniversary of Kellyanne's 1st seizure. I was at Hershey Park with the kids, my mom and my aunt. I didn't recognize it as a seizure. It wasn't the shaking, convulsive kind. My baby just left me for a few minutes, although it felt like a lifetime. It was by far the scariest moment in my life. Ask anyone there, as I stood by the carousel and screamed for someone to help me. It was at Hershey Medical Center that she was diagnosed with Subcortical Band Heterotopia. I was just so thankful she was alive, the words really meant nothing to me at the time. After an MRI a few weeks later, the diagnosis was confirmed SBH and PMG. We met with a renowned Dr. at Johns Hopkins and she was in awe at how well Kellyanne was doing considering the picture she had studied of her brain. She had already surpassed the expectations of what the MRI would suggest a child capable of doing with a brain as abnormal as the one in the picture. It was a "continue what you are doing therapy wise and wait and see what happens" recommendation. And so we did. The next seizure was almost a full 2 years later and then the next a year and 1/2 later. Unfortunately, it was at that time that the seizures didn't go away. The medication dosing game began and we are still playing it today. It's not a fun game and sometimes you want to quit, but you can't.
On Tuesday we will take Kellyanne into yet another specialist to get hooked up with electrodes on her scalp and an ekg monitor and we will bring her home for 3 days. On Thursday we will take her back to get the electrodes removed. The info gathered from this 48 hour eeg will hopefully give us insight as to how to best treat KA at this point. She's enetering puberty and from what I have read, things have a tendency to get worse at this stage and then, hopefully, better.
KA doesn't seem bothered by the seizures and they are still non-convulsive in nature. But they are tricky little buggers. They come with her sleep/wake cycle. Many times we sit and watch and we have to ask, was that one? Lately, there has been no question, she will twitch and jerk for longer than wanted periods of time - so obviously, it seems time for a major medication adjustment, not just a tweek. The question is, which one, how much, etc. The seizures are no longer frightening to me. She is able to function through them....eat, walk, talk, watch tv, etc. but they are frustrating. And her night waking.....3, 4, 5 time a night, are they seizures, or not? This is really the reason for the 48 hr eeg - to see what's going on at night.
And so I sit and think, and do nothing but sit and think and dwell in frustration. Time to do the laundry - a mundane task that keeps me focused.
This is what is so dizzying for me.......and I'm not the one having the seizures!
Friday, December 30, 2011
Tuesday, December 27, 2011
I DO
We have a so far short, time honored tradition at Christmas which involves putting a beautiful pink solid peppermint pig in a red velvet bag and sharing a blessing from the past year while tapping the pig with a pewter hammer. After sharing our blessings, we all take a piece of the peppermint to eat in hopes of prosperity for the coming year. We do this with both extended families. Not only is it edifying to hear all of the many blessings bestowed upon all generations of both families, it is neat to hear the recurring theme of family in almost all of the young adult and adult members of the families. FAMILY! Aren't we blessed to have FAMILY! People who we love, care about, care for, listen to, cheer on, cry with, pray for, laugh with - you get where I'm going.
19+ years ago I said I DO to a young man named Michael. We made promises to each other and God before friends and family to love one another until 'death do we part'. While we both understood the promise, we had no idea how God would call us to honor that promise day after day after day. We were young and in love and life was just there for the taking. And we took life by the horns and we created life and we loved life. We began in a small row house that Michael renovated in Canton, southeast Baltimore City. City life served us well for 2 years until Michael Jr. turned one. From there we moved to Arbutus MD into a house I will always love. I taught at the local elementary school and Michael was a cashier at Giant and worked for a then, small Exhibit Design Co. When Eilis came along, I stopped teaching to be at home with both of our kids and then, just before Michael started Kindergarten we made the move to Montgomery County to a small town called Damascus, where Michael's sister and her family lived. Michael started a new job with another, bigger, Exhibit/Design Co and Erin came along and then Kellyanne and we outgrew our home and moved a mile away to the home where we currently reside. Life was so good. Money was always tight, but we never wanted for anything (well, maybe I did - just a bit). The best part about all of it was, we were never more than an hour away from any given family member.......FAMILY! It's what kept us in Maryland and what keeps us here today.
So back to the Peppermint Pig. The blessing that I shared this year was that of a deeper appreciation for my husband in the care of our family, especially Kellyanne. It's not surprising to me that God in His infinite wisdom knows who your helpmate in life will be. That does not take us out of the equation - rather, one must pray for wisdom and discernment before saying I DO. Because, if you take the promise seriously, that person will be your helpmate for life. So you better be pretty darn sure your ready for WHATEVER God hands you in life together! I know that I could not be the mom I am to our children, without Michael being the dad that he is. I know that Kellyanne, and all that comes in her little being, is God's way of helping Michael and I live out our promise to honor the vows we made on 7-11-92.
Our life is far from perfect. But the imperfections keep us from becoming stagnant. They teach us that we live in an imperfect world, that life is not fair but it is good! We can only hope and pray that these lessons/values will be passed on to our children as they grow and mature and seek their paths in life.
19+ years ago I said I DO to a young man named Michael. We made promises to each other and God before friends and family to love one another until 'death do we part'. While we both understood the promise, we had no idea how God would call us to honor that promise day after day after day. We were young and in love and life was just there for the taking. And we took life by the horns and we created life and we loved life. We began in a small row house that Michael renovated in Canton, southeast Baltimore City. City life served us well for 2 years until Michael Jr. turned one. From there we moved to Arbutus MD into a house I will always love. I taught at the local elementary school and Michael was a cashier at Giant and worked for a then, small Exhibit Design Co. When Eilis came along, I stopped teaching to be at home with both of our kids and then, just before Michael started Kindergarten we made the move to Montgomery County to a small town called Damascus, where Michael's sister and her family lived. Michael started a new job with another, bigger, Exhibit/Design Co and Erin came along and then Kellyanne and we outgrew our home and moved a mile away to the home where we currently reside. Life was so good. Money was always tight, but we never wanted for anything (well, maybe I did - just a bit). The best part about all of it was, we were never more than an hour away from any given family member.......FAMILY! It's what kept us in Maryland and what keeps us here today.
So back to the Peppermint Pig. The blessing that I shared this year was that of a deeper appreciation for my husband in the care of our family, especially Kellyanne. It's not surprising to me that God in His infinite wisdom knows who your helpmate in life will be. That does not take us out of the equation - rather, one must pray for wisdom and discernment before saying I DO. Because, if you take the promise seriously, that person will be your helpmate for life. So you better be pretty darn sure your ready for WHATEVER God hands you in life together! I know that I could not be the mom I am to our children, without Michael being the dad that he is. I know that Kellyanne, and all that comes in her little being, is God's way of helping Michael and I live out our promise to honor the vows we made on 7-11-92.
Our life is far from perfect. But the imperfections keep us from becoming stagnant. They teach us that we live in an imperfect world, that life is not fair but it is good! We can only hope and pray that these lessons/values will be passed on to our children as they grow and mature and seek their paths in life.
So to Michael, 19+ years later I still say I DO, everyday!
Saturday, December 24, 2011
Most Days Lately
It's Christmas Eve. The wrapping is almost finished, the house is almost ready. Never mind that the cookies weren't baked, there's plenty of time for that after Christmas. The hustle and bustle of shopping and counting the number of gifts in each kids pile in the name of equality (ridiculous, I know), the wrapping and stashing, though we've become somewhat lacsidazical about this, the worry of having overbought with $$ we do not have, etc, etc, etc. Yes, we are reaching the home stretch, in the secular realm at least.
The true joy is just beginning. The celebration of Christ's birth. The manifestation of God as an infant child - yes, this is what it is all about. We all know it (I speak for Christians), yet we go about the gift buying frenzy and making sure everything is just right, anyway. I'm not going to lie. I LOVE to shop! I love to buy for other people, I love to think of each person on my list as I ponder each gift and then decide on the final purchase. I feel guilty when I cheat and grab something from the back of my closet, which is why I rarely do it. Is it wrong to love both the secular and the Christian aspects of the Christmas Season? I think not.
We have been blessed with a Secret Santa for the past 12 days. Do you realize how humbling it is to receive such generous gifts from an anonymous source????? Yet, I must admit my prayers have been answered. I have been praying for Christ to reveal Himself to me. Lately, I've been in a low place in my faith....part of my highs and lows with Kellyanne. Jesus has been very real to me over the past 12 days. The anticipation, the joy, the hope, the gratitude, the sacrifice....for both the Hagan family as well as the Secret Santa. Those with a strictly secular mindset might say, it's a person being kind, and that is true. But I go deeper. That kindness is someone being the hands and feet of Jesus Christ, bringing joy and hope and anticipation into our very real, tangible lives. One night Kellyanne was awake when the doorbell rang. I said "Let's go see what Santa brought us". She replied in her high pitched excited voice, "SANTA"? We opened the door and there was the gift. She was excited, but at the same time without question - just acceptance of the gift from Santa.
While most children her age are sleeping fitfully and giddy with excitement, KA goes about her days and nights as usual. She will love being with her grandmother, aunt, uncle and cousins today in Annapolis and with her grandparents, aunts, uncles and cousins tomorrow. She will love going to church and seeing baby Jesus lying in the manger. She will have forgotten about her gifts that she opened just hours before heading off to church because, that's Kellyanne. Life in the moment. And that is her gift to us. Reminding us the it is only the moment that truly matters - that is the gift, no regrets, no expectations, just loving where you are and who you are with right then and there. So thank you Kellyanne for that reminder. Thank you for being used as God's vessel to teach us about life and unconditional love. Somedays I need it more than ever.....most days lately.
The true joy is just beginning. The celebration of Christ's birth. The manifestation of God as an infant child - yes, this is what it is all about. We all know it (I speak for Christians), yet we go about the gift buying frenzy and making sure everything is just right, anyway. I'm not going to lie. I LOVE to shop! I love to buy for other people, I love to think of each person on my list as I ponder each gift and then decide on the final purchase. I feel guilty when I cheat and grab something from the back of my closet, which is why I rarely do it. Is it wrong to love both the secular and the Christian aspects of the Christmas Season? I think not.
We have been blessed with a Secret Santa for the past 12 days. Do you realize how humbling it is to receive such generous gifts from an anonymous source????? Yet, I must admit my prayers have been answered. I have been praying for Christ to reveal Himself to me. Lately, I've been in a low place in my faith....part of my highs and lows with Kellyanne. Jesus has been very real to me over the past 12 days. The anticipation, the joy, the hope, the gratitude, the sacrifice....for both the Hagan family as well as the Secret Santa. Those with a strictly secular mindset might say, it's a person being kind, and that is true. But I go deeper. That kindness is someone being the hands and feet of Jesus Christ, bringing joy and hope and anticipation into our very real, tangible lives. One night Kellyanne was awake when the doorbell rang. I said "Let's go see what Santa brought us". She replied in her high pitched excited voice, "SANTA"? We opened the door and there was the gift. She was excited, but at the same time without question - just acceptance of the gift from Santa.
While most children her age are sleeping fitfully and giddy with excitement, KA goes about her days and nights as usual. She will love being with her grandmother, aunt, uncle and cousins today in Annapolis and with her grandparents, aunts, uncles and cousins tomorrow. She will love going to church and seeing baby Jesus lying in the manger. She will have forgotten about her gifts that she opened just hours before heading off to church because, that's Kellyanne. Life in the moment. And that is her gift to us. Reminding us the it is only the moment that truly matters - that is the gift, no regrets, no expectations, just loving where you are and who you are with right then and there. So thank you Kellyanne for that reminder. Thank you for being used as God's vessel to teach us about life and unconditional love. Somedays I need it more than ever.....most days lately.
Wednesday, December 21, 2011
It's official, I think
So it appears as if I have successfully created this so called 'blog'. I have thoughts, many thoughts, that just spin around in my mind. Some days more than others. The other morning after Kellyanne had awoken 5 times the night before and we don't know if it is seizure related or behavioral, I was dizzy. I knew I needed to clear my head, but I didn't feel like talking about it and my hands hurt just thinking about writing it down in a notebook journal. That's when the idea of starting a blog took hold. My son began one when he went away to school so the idea was obviously not foreign to me. As I was thinking 'do I call the Dr'?, 'do I wait another day or 2 or 3'?, 'do I go back to bed after she gets on the bus'? or what?????? I was, I'll say it again, dizzy!
I'm not complaining ( I don't think), at least that's not my intention. I just need to process on paper/screen my thoughts. Whether anyone ever sees them or not doesn't matter to me. I have friends who have children with special needs and they 'get it' - this indescribable rubber band ball feeling. Do you get it?
Getting Started
This is a whole new world for me.....blogging that is. It's not the blogging that is difficult it is setting up the darn background page. I want a customized, beautiful background page. I am going to post and see what happens......
Subscribe to:
Posts (Atom)