Imagine, you child is almost 5 years old. And last week for the "third" time in her life, she laughed and smiled and giggled and was happy all day! The rest of the time has been spent with a somber child who cries on an off, who has personality but never really shows happiness, who shows her love, but rarely shows a smile.
Kim and Andrew - I am so happy for you and your "third giggly Lily day!" She is so beautiful - I pray for many more days like this to come!
Thursday, May 24, 2007
Tuesday, May 22, 2007
Emotions and Regret
Before I get all "deep" on you, the NEW Freedom Walk total is $112,146.36!
I had an absolutely wonderful conversation with a good friend last Friday. We both have been getting through some “emotional” milestones of late, and our talk left me feeling better about many things. In particular, I felt better about being Jenelle’s Mom and about the mixed emotions I’ve been having about all that requires. Thanks Kirsten!
I love both of my children equally and yet so very differently. With Jack we get to experience all the “normal” things in life, and for that I am thankful. I love Jenelle is so many different ways, yet there are feelings I experience with her that sometimes I think are not normal for a parent to have. While I can’t imagine my life without her, I sometimes regret having her in my life as well. And that is a difficult and selfish statement to make, but I’m human, so I'll admit it.
What did I do to deserve this? When I was little, my sister and I would sometimes joke and make fun of mentally retarded kids. Not of any one child in particular, but like kids do we often teased and joked about being “dumb” or “retarded”. Of course, my sister always followed our joking with “Be careful, you might end up with one (a handicapped child) some day!” As if God was somehow keeping a mental tally of our jokes, and making a list of what we’d get later in life. The insecure part of me still wonders sometimes if that isn’t true in some way.
Although I never experienced any difficulty getting pregnant, lately I feel that having a special needs child might be somewhat equal to the sorrow associated with infertility. Kirsten explained this beautifully by stating that “sometimes it is hard to make decisions using common sense instead of with your emotions.” Emotionally my heart tells me I want to have another child and that it is worth the risk of having another Jenelle, and yet my common sense knows the percentages and the statistics. And with Jenelle’s good health of late, I need to keep my common sense and remind myself of all the hell we experienced in getting to this point.
It is said that the first year of special needs is the hardest, and I wholeheartedly agree. But with the passing of time, things get easier and harder in different ways. With time I see the personal grief my parents and in-laws have experienced; the mourning of the loss of that “perfect” child. That over time they too have learned to accept things with regard to Jenelle, but the raw emotion is still somewhere beneath the surface, and still a painful reminder of what we lost. We are all coping with that loss, and still hoping to find the answers to what went wrong.
I think my emotions have come about in light of the recent article and the Freedom Walk and in re-living that difficult time. Once again I can see that Jenelle touches so many lives in many different ways. And while I have learned to live with a child like Jenelle, I also selfishly regret sometimes having to make the decisions we do with regard to Jenelle. It's the little things I regret. Little things like going out of town for a weekend as a family, or going to the beach are mostly impossible to do with Jenelle. Simple things like finding daycare become so much more complex. And yes, while there are things to help make caring for Jenelle easier, those things also mask the reality that this child will forever need someone to care for her. And in reality, I sometimes regret having to be that person.
My friend reminded me last Friday that my feelings are normal. I am human, and I am not perfect. It is OK to regret the things that happen to us in life. While it is difficult sometimes not to listen to what your heart wants, the reality is that your common sense usually knows better. And sometimes it is good to live in the moment, like the wonderful moments we are currently experiencing with Jenelle. But we must always remember the hellish journey it took to get here. And as a way to survive our emotions, we can only hope for good things to come.
I had an absolutely wonderful conversation with a good friend last Friday. We both have been getting through some “emotional” milestones of late, and our talk left me feeling better about many things. In particular, I felt better about being Jenelle’s Mom and about the mixed emotions I’ve been having about all that requires. Thanks Kirsten!
I love both of my children equally and yet so very differently. With Jack we get to experience all the “normal” things in life, and for that I am thankful. I love Jenelle is so many different ways, yet there are feelings I experience with her that sometimes I think are not normal for a parent to have. While I can’t imagine my life without her, I sometimes regret having her in my life as well. And that is a difficult and selfish statement to make, but I’m human, so I'll admit it.
What did I do to deserve this? When I was little, my sister and I would sometimes joke and make fun of mentally retarded kids. Not of any one child in particular, but like kids do we often teased and joked about being “dumb” or “retarded”. Of course, my sister always followed our joking with “Be careful, you might end up with one (a handicapped child) some day!” As if God was somehow keeping a mental tally of our jokes, and making a list of what we’d get later in life. The insecure part of me still wonders sometimes if that isn’t true in some way.
Although I never experienced any difficulty getting pregnant, lately I feel that having a special needs child might be somewhat equal to the sorrow associated with infertility. Kirsten explained this beautifully by stating that “sometimes it is hard to make decisions using common sense instead of with your emotions.” Emotionally my heart tells me I want to have another child and that it is worth the risk of having another Jenelle, and yet my common sense knows the percentages and the statistics. And with Jenelle’s good health of late, I need to keep my common sense and remind myself of all the hell we experienced in getting to this point.
It is said that the first year of special needs is the hardest, and I wholeheartedly agree. But with the passing of time, things get easier and harder in different ways. With time I see the personal grief my parents and in-laws have experienced; the mourning of the loss of that “perfect” child. That over time they too have learned to accept things with regard to Jenelle, but the raw emotion is still somewhere beneath the surface, and still a painful reminder of what we lost. We are all coping with that loss, and still hoping to find the answers to what went wrong.
I think my emotions have come about in light of the recent article and the Freedom Walk and in re-living that difficult time. Once again I can see that Jenelle touches so many lives in many different ways. And while I have learned to live with a child like Jenelle, I also selfishly regret sometimes having to make the decisions we do with regard to Jenelle. It's the little things I regret. Little things like going out of town for a weekend as a family, or going to the beach are mostly impossible to do with Jenelle. Simple things like finding daycare become so much more complex. And yes, while there are things to help make caring for Jenelle easier, those things also mask the reality that this child will forever need someone to care for her. And in reality, I sometimes regret having to be that person.
My friend reminded me last Friday that my feelings are normal. I am human, and I am not perfect. It is OK to regret the things that happen to us in life. While it is difficult sometimes not to listen to what your heart wants, the reality is that your common sense usually knows better. And sometimes it is good to live in the moment, like the wonderful moments we are currently experiencing with Jenelle. But we must always remember the hellish journey it took to get here. And as a way to survive our emotions, we can only hope for good things to come.
Friday, May 18, 2007
Freedom Walk Total & Update on Jenelle
I’m so sorry not to update sooner about the Freedom Walk. Many of you have been asking about the final total and I've just been too busy to update. First of all, thank you to all of you who sent in donations - without you the Freedom Walk would not have been such a success.
Now, the great news - with donations still coming in, the 2007 Freedom Walk has raised over $101,000! The Epilepsy Alliance of Orange County has over 25 programs running for individuals and families dealing with Epilepsy. The funds raised at the Freedom Walk go directly into those services, so that they can continue to be offered "for free" to our individuals and families. These services include support group meetings, education seminars, advocate representation at IEPs, music therapy for the kids and counseling for parents. As for Team Jenelle - we raised $4,850! Combined with donations from my firm and from my firm's team, we raised almost $9,000! Thank you again for your support!
Jenelle had a small cold earlier this week and has now passed it onto me and Jack. Other than that, she is doing wonderful. I haven't mentioned this yet (because our daycare provider gets these updates) but in April, Jenelle's daycare informed me that it was time to find new daycare for Jenelle. It is a bitter sweet milestone we knew would come eventually. Jenelle is getting to big and heavy to lift, and with the other children in the daycare ranging in age from a few months told to ages 2 and 3, Jenelle is getting too big for the other kids. We love our daycare provider, and we know she loves Jenelle dearly, but we understand the situation. We are hoping to find a new place by the end of June, and will need care full time for the month of August when school is not in session for Jenelle. I am mentioning this now as the process of finding daycare for Jenelle is taking longer than I anticipated.
We have been using daycare as a place where Jenelle can be picked up and dropped by her school bus, and for care during school holidays and half days. Rather than find a nurse or nanny to watch Jenelle at home, I would prefer to find a setting such as a before and after school care program so she can be with other children her age. Currently I am working with Regional Center and our school district and there are some possibilities. While seizures have become less a problem for Jenelle, her g-tube feedings remain a medical issue that some facilities are not willing to take on. We are currently looking into the YMCA and Child Development Center programs in our District and waiting for in home nursing to help out as well. If you have any ideas or know of a facility that might be interested, we'd be happy to hear about it!
And it seems Jenelle's 15 minutes of fame are up. We received some great response from our community about the article published both in the Tustin News and Orange County Register about Jenelle. The small website where I keep these updates usually has 30 hits or so a week - on the day of publication, we had 750 hits, and 2,500 the rest of that week! The following week, we had over 1,500 hits totaling over 4,000 in the two week time frame! We've been able to help out some local families to get them in touch with the Epilepsy Alliance, and I know the article generated donations as well. What can I say… Jenelle is just so cute, who wouldn't love her?
So that is all for now. I found out last week from UCLA that we should have results from the Rhett Test at the end of this month. Thank you again for your support, your prayers and as always for keeping us in your positive thoughts! I'll keep you posted!
Now, the great news - with donations still coming in, the 2007 Freedom Walk has raised over $101,000! The Epilepsy Alliance of Orange County has over 25 programs running for individuals and families dealing with Epilepsy. The funds raised at the Freedom Walk go directly into those services, so that they can continue to be offered "for free" to our individuals and families. These services include support group meetings, education seminars, advocate representation at IEPs, music therapy for the kids and counseling for parents. As for Team Jenelle - we raised $4,850! Combined with donations from my firm and from my firm's team, we raised almost $9,000! Thank you again for your support!
Jenelle had a small cold earlier this week and has now passed it onto me and Jack. Other than that, she is doing wonderful. I haven't mentioned this yet (because our daycare provider gets these updates) but in April, Jenelle's daycare informed me that it was time to find new daycare for Jenelle. It is a bitter sweet milestone we knew would come eventually. Jenelle is getting to big and heavy to lift, and with the other children in the daycare ranging in age from a few months told to ages 2 and 3, Jenelle is getting too big for the other kids. We love our daycare provider, and we know she loves Jenelle dearly, but we understand the situation. We are hoping to find a new place by the end of June, and will need care full time for the month of August when school is not in session for Jenelle. I am mentioning this now as the process of finding daycare for Jenelle is taking longer than I anticipated.
We have been using daycare as a place where Jenelle can be picked up and dropped by her school bus, and for care during school holidays and half days. Rather than find a nurse or nanny to watch Jenelle at home, I would prefer to find a setting such as a before and after school care program so she can be with other children her age. Currently I am working with Regional Center and our school district and there are some possibilities. While seizures have become less a problem for Jenelle, her g-tube feedings remain a medical issue that some facilities are not willing to take on. We are currently looking into the YMCA and Child Development Center programs in our District and waiting for in home nursing to help out as well. If you have any ideas or know of a facility that might be interested, we'd be happy to hear about it!
And it seems Jenelle's 15 minutes of fame are up. We received some great response from our community about the article published both in the Tustin News and Orange County Register about Jenelle. The small website where I keep these updates usually has 30 hits or so a week - on the day of publication, we had 750 hits, and 2,500 the rest of that week! The following week, we had over 1,500 hits totaling over 4,000 in the two week time frame! We've been able to help out some local families to get them in touch with the Epilepsy Alliance, and I know the article generated donations as well. What can I say… Jenelle is just so cute, who wouldn't love her?
So that is all for now. I found out last week from UCLA that we should have results from the Rhett Test at the end of this month. Thank you again for your support, your prayers and as always for keeping us in your positive thoughts! I'll keep you posted!
Tuesday, May 08, 2007
Joy, Pain and Looming Anniversaries
I haven’t really felt like posting an update these past few days. I haven't been sleeping well, and couldn’t sleep at all Sunday night. It was one of those nights when exhaustion made me wired, and recent news left me restless. Since the Freedom Walk, my e-mail has been overwhelmed with exciting news about our fundraising efforts, and with sad news as well. The Walk has raised a total of $105,000 so far – all of it to be used towards epilepsy resources for families in Orange County and the surrounding areas. I am so proud, and so appreciative that we have exceeded our goal!
And then on Sunday morning I read the news about the 3 children from Ladera Ranch who were killed in a horrific car accident. And later I heard a story about another local child who dropped dead of a heart attack at age 21, and news that a special needs friend of ours is sick again, and then that a child had 3 seizures at the Walk, and so on. I could not sleep on Sunday, because I just cannot imagine losing my children. Jack is so full of life as he is about to finish Kindergarten and is enjoying baseball so very much. And Jenelle - she is doing so well, improving so much, and doing new cute things everyday… I just can’t imagine losing her now.
And then there are the small anniversaries for Jenelle; April 30, 2004, May 10, 2005, and June 21, 2005. I thought with the passing of time, these dates wouldn’t be so emotional. However, they are still fresh in my mind as if they were yesterday. While Jenelle is constantly improving, I am always aware that it could change at any moment.
During the preparations for the Freedom Walk, we asked a volunteer to call some members to ask them to sign up a team to help support the EAOC. Sadly, our volunteer reported that some families responded with, “We’re seizure free now, we don’t need you anymore!” Other families were not involved because they had moved onto other causes affecting their child. While it baffles me that someone could go through all that, obtain the ultimate prize and then never look back - I am also reminded of our looming anniversaries and of the literal hell we’ve been through. So I guess I can understand why someone wouldn’t want to revisit that hell. And as every parent can tell you, it is like going through hell watching your child deal with difficulties in life. And no matter how simple the procedure, the fear is so very painful and so very real.
Those who are young are probably wondering why they should ever have kids. Let me tell you, it is so worth it. The pain, the joy, the pride, the agony, the fear… It is an experience that is difficult to describe and yet so rewarding. My children make me a better human being. And while lately the news has been good and bad, I realize that everything happens for a purpose. And our children touch and change our lives deeply. Shouldn’t we all strive for that?
And then on Sunday morning I read the news about the 3 children from Ladera Ranch who were killed in a horrific car accident. And later I heard a story about another local child who dropped dead of a heart attack at age 21, and news that a special needs friend of ours is sick again, and then that a child had 3 seizures at the Walk, and so on. I could not sleep on Sunday, because I just cannot imagine losing my children. Jack is so full of life as he is about to finish Kindergarten and is enjoying baseball so very much. And Jenelle - she is doing so well, improving so much, and doing new cute things everyday… I just can’t imagine losing her now.
And then there are the small anniversaries for Jenelle; April 30, 2004, May 10, 2005, and June 21, 2005. I thought with the passing of time, these dates wouldn’t be so emotional. However, they are still fresh in my mind as if they were yesterday. While Jenelle is constantly improving, I am always aware that it could change at any moment.
During the preparations for the Freedom Walk, we asked a volunteer to call some members to ask them to sign up a team to help support the EAOC. Sadly, our volunteer reported that some families responded with, “We’re seizure free now, we don’t need you anymore!” Other families were not involved because they had moved onto other causes affecting their child. While it baffles me that someone could go through all that, obtain the ultimate prize and then never look back - I am also reminded of our looming anniversaries and of the literal hell we’ve been through. So I guess I can understand why someone wouldn’t want to revisit that hell. And as every parent can tell you, it is like going through hell watching your child deal with difficulties in life. And no matter how simple the procedure, the fear is so very painful and so very real.
Those who are young are probably wondering why they should ever have kids. Let me tell you, it is so worth it. The pain, the joy, the pride, the agony, the fear… It is an experience that is difficult to describe and yet so rewarding. My children make me a better human being. And while lately the news has been good and bad, I realize that everything happens for a purpose. And our children touch and change our lives deeply. Shouldn’t we all strive for that?
Saturday, May 05, 2007
THANK YOU!
We just got home from the Freedom Walk and wanted to post some photos of our wonderful day! The walk was incredibly successful as was Team Jenelle's Avocados and Team SYCR (my firm's, Stradling Yocca Carlson & Rauth.) As of walk time, The Avocados raised $4,530, and Team SYCR raised a total of $3,500 for a total of $8,030 with donations still coming in! As of walk time, the walk had raised $82,590 - and with the silent auction, raffle and walk on registration, we believe we hit our goal of $100,000!
AWESOME! THANK YOU!
Here is Team Jenelle's Avocados
AWESOME! THANK YOU!
Here is Team Jenelle's Avocados
Here I am with my Aunt & Uncle and my cousin's daughter Tessa. They missed the team photo but we made it up when we saw the walk sign!
Our Jenelle with an adorable pony given to her by Tessa. Jenelle really loved the horse, and kept biting its mane.
Family photo - with Jenelle looking away of course!
Registration Headquarters and Team SYCR tent!
THANK YOU ALL SO VERY MUCH FOR YOUR SUPPORT!
I'm going to take a nap now!
Wednesday, May 02, 2007
Jenelle in the Local News!
Early today, I checked my e-mail and received notice that an article about Jenelle and the Epilepsy Freedom Walk had appeared in the "on line" edition of our local news paper. If you are finding this website from that article - Welcome!
We gave the interview last Friday and the photographer took photos on Monday. The writer was very sweet and took in a lot of information in a short time. There are two things mentioned that are slightly incorrect; I am not on the board for the Epilepsy Alliance, I am just on the Freedom Walk planning committee and Jenelle's seizures are "neurological" - we just don't know what causes them. Jack loved having his photo taken, and is quite a ham as you can see and Jenelle was fascinated by the clicking of the camera. It was fun!
You can read the article and view the photos here.
Thank you to Erika Torres and photographer Miguel Vasconcellos of the Tustin News. We appreciate your help and efforts to spread the word about our fundraising goals and our special little girl!
We gave the interview last Friday and the photographer took photos on Monday. The writer was very sweet and took in a lot of information in a short time. There are two things mentioned that are slightly incorrect; I am not on the board for the Epilepsy Alliance, I am just on the Freedom Walk planning committee and Jenelle's seizures are "neurological" - we just don't know what causes them. Jack loved having his photo taken, and is quite a ham as you can see and Jenelle was fascinated by the clicking of the camera. It was fun!
You can read the article and view the photos here.
Thank you to Erika Torres and photographer Miguel Vasconcellos of the Tustin News. We appreciate your help and efforts to spread the word about our fundraising goals and our special little girl!
Tuesday, May 01, 2007
Blogging Against Disablism Day 2007!
A little more than a year ago, a disabled blogger came up with an idea to celebrate “Disablism”. The idea had a rally call in the post by a British Blogger entitled “One in Seven”, which further defines the term “Disablism” which is not as common here in the United States. Regardless of your geographical location, "Disablism" is a problem that is world wide. Members of our disabled community are far too often excluded and discriminated against because of their disabilities. Even Jenelle has experienced discrimination, and thankfully will never understand.
As her parent and advocate, I feel compelled to participate in this day, to help further the understanding of life with a disability (or in our case, in caring for a disabled child.) I feel compelled, because it is my way of ensuring a brighter future for my Jenelle. Wouldn't the parent of a "normal" child do the same?
According to LADY BRACKNELL, the disabled community is defined as follows:
Last year, I posted a piece about the first time Jenelle was discriminated against because of her epilepsy. I wanted to show our readers that discrimination against disabilities can happen to anyone at any age as she was only 18 months old at the time. It felt good to share our story, and many took notice, including the BBC. This year, in honor of “Blogging against Disablism Day 2007,” I decided to focus on efforts to show how to include the disabled community in our society, and how we try to share Jenelle with our community.
In October, Jenelle will be 5 and thus, eligible to start Little League in the coming spring. In our family, baseball and Little League are our way of life. Even though she is a girl, had she been “normal” Jenelle would be starting T-ball next Spring. While I think this fact would be a little more heartbreaking had she been a boy it is still one more thing Jenelle cannot do.
In 1989, Little League International began a program called “Challenger League”. The Challenger Division was established as a separate division of Little League Baseball to enable boys and girls with physical and mental disabilities, ages 5-18 or the completion of high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.
Our League does not have a Challenger Division ... yet. The closest one is a bit of a drive for us on a busy day, so we have approached our League and we are asking them to consider starting a new Challenger Division next year. It sounds promising, and if all goes well, Jenelle will be playing baseball next year along side her brother. And in turn, we will be sharing her beauty and her disability with our friends and neighbors in our immediate area and through our love of baseball. And we will be meeting other families like ours in our city and its surroundings, and we'll be celebrating their disabled children as well, and their challenges in life.
One of the ways to over come "Disablism" is to start including the disabled in our society. I find it encouraging that a sport once thought impossible for a person with a disability to play, is now making the game possible for all children with disabilities. Even better, these children with disabilities are assigned to “buddies” which consist of “typical” children in the community and who are already playing baseball. It is a "win win" situation for both. And in the end, we all come closer to understanding the disabled members of our community and their individual needs.
Normal things are never going to be easy for our girl, and baseball is a difficult game. But, baseball is what this family does, and Jenelle is a member of our family. I sometimes still mourn the fact that Jenelle will never take dance class or enjoy playing with dolls the way I did as a child. However, because of the efforts of Little League with their Challenger Division, Jenelle can and will play baseball. And I know she will love it.
As her parent and advocate, I feel compelled to participate in this day, to help further the understanding of life with a disability (or in our case, in caring for a disabled child.) I feel compelled, because it is my way of ensuring a brighter future for my Jenelle. Wouldn't the parent of a "normal" child do the same?
According to LADY BRACKNELL, the disabled community is defined as follows:
“We have two things - and only two things - in common with one another:
1. we have some degree of physical or mental functional loss or difference (we have impairments); and2. we are excluded from full participation in society because we have impairments (we are disabled).”
Last year, I posted a piece about the first time Jenelle was discriminated against because of her epilepsy. I wanted to show our readers that discrimination against disabilities can happen to anyone at any age as she was only 18 months old at the time. It felt good to share our story, and many took notice, including the BBC. This year, in honor of “Blogging against Disablism Day 2007,” I decided to focus on efforts to show how to include the disabled community in our society, and how we try to share Jenelle with our community.
In October, Jenelle will be 5 and thus, eligible to start Little League in the coming spring. In our family, baseball and Little League are our way of life. Even though she is a girl, had she been “normal” Jenelle would be starting T-ball next Spring. While I think this fact would be a little more heartbreaking had she been a boy it is still one more thing Jenelle cannot do.
In 1989, Little League International began a program called “Challenger League”. The Challenger Division was established as a separate division of Little League Baseball to enable boys and girls with physical and mental disabilities, ages 5-18 or the completion of high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.
Our League does not have a Challenger Division ... yet. The closest one is a bit of a drive for us on a busy day, so we have approached our League and we are asking them to consider starting a new Challenger Division next year. It sounds promising, and if all goes well, Jenelle will be playing baseball next year along side her brother. And in turn, we will be sharing her beauty and her disability with our friends and neighbors in our immediate area and through our love of baseball. And we will be meeting other families like ours in our city and its surroundings, and we'll be celebrating their disabled children as well, and their challenges in life.
One of the ways to over come "Disablism" is to start including the disabled in our society. I find it encouraging that a sport once thought impossible for a person with a disability to play, is now making the game possible for all children with disabilities. Even better, these children with disabilities are assigned to “buddies” which consist of “typical” children in the community and who are already playing baseball. It is a "win win" situation for both. And in the end, we all come closer to understanding the disabled members of our community and their individual needs.
Normal things are never going to be easy for our girl, and baseball is a difficult game. But, baseball is what this family does, and Jenelle is a member of our family. I sometimes still mourn the fact that Jenelle will never take dance class or enjoy playing with dolls the way I did as a child. However, because of the efforts of Little League with their Challenger Division, Jenelle can and will play baseball. And I know she will love it.
Subscribe to:
Posts (Atom)
Posts
