Remind me next year not to give Jenelle chocolate cake at dinner before giving her a bath and putting her to bed! She wiggled and giggled so much, I thought she was going to seriously hurt herself in the bath, and then I worried that she'd never fall asleep!
Thankfully, her drugs kicked in! ;)
Thursday, October 23, 2008
Wednesday, October 22, 2008
Happy 6th Birthday Jenelle!
Six years ago today our sweet little girl made her way into the world and into our hearts. We are so blessed to have her in our lives, and for all that she has accomplished. Here are some recent photos to share.
This photo was taken Sunday afternoon on Jenelle's favorite ride at Disneyland - the tram! We went to Disneyland after participating in the CHOC Walk earlier that morning. Not the smile we got last year, but then again it had been a long day and she was worn out.
This photo was taken Sunday afternoon on Jenelle's favorite ride at Disneyland - the tram! We went to Disneyland after participating in the CHOC Walk earlier that morning. Not the smile we got last year, but then again it had been a long day and she was worn out.
Here are the kids at the pumpkin patch last Saturday. Jenelle is wearing her new "chewelery", which is a device to help keep her from biting her arms and shirt. She really likes it and is using it appropriately.
Always ready to pose for the camera!
Last night, I made cup cakes for Jenelle to share with her classmates. Today the typical students will be in her class for inclusion. This is the first time I have ever made cup cakes for Jenelle... simply because with her improved eating skills, she can actually eat them now! Of course, Jenelle's favorite is chocolate.
And here is one of the family at the crack of dawn watching the sun rise shortly before the beginning of the CHOC/Disneyland Walk in the park last Sunday. Thanks to all who sponsored our team, and to the family for being a good sport to wake up at 5:30!
Happy Birthday Princess Boo!
We love you!
Monday, October 13, 2008
The Mommy Wars have entered Politics!
A few weeks ago, I got an e-mail from a mom I know in one of my special needs Internet support groups. The e-mail asked me to join her in a group called, "Special Needs Moms against Sarah Palin." While I am friends with this mom in all that we've shared and been through together as special needs moms, this is one request from her that I couldn't support.
Before I go further, I will let you know now that I am a registered Republican, and I have already cast my vote for McCain/Palin via absentee ballot (sorry, you can't change my vote now!) But this issue is more than just politics to me. If I were supporting "the other guy", I would still be offended by a group of moms opposing another mom for her decision to follow her career. And by no means do I consider myself to be a feminist. I simply believe that a woman can have both; a career and children. And I know for a fact - it is possible that a Mom can work full time and raise a child with special needs. Especially a child with complex medical issues.
I will admit, I had no choice when I had to continue working when Jenelle's medical issues became a priority. My job carries the medical benefits we desperately needed at the time. I didn't have the luxury of quitting my job to attend to her needs 24/7. I had to find a way to make it work.
The first glaring questions about my continuing to work came from Jenelle's first neurologist. He flat out told me to quit my job so I could enjoy the few months or years we had left with Jenelle. This doctor refused to try the Ketogenic Diet for Jenelle, because in his words to me, "The fact that you are still working tells me you are not committed to your child and that you are not committed to do this diet!" It was horrible, and I cried for days. I felt like my job was an albatross hanging from my neck. Something I couldn't get rid of because I couldn't pay the medical bills.
And then, I received some of the best advice I'd ever heard from another special needs mom that works full time. She told me, "Kelly, your job is to be Jenelle's mother. You are not her doctor, nurse, teacher, therapist, bus driver, aide or social worker, you are her mother. That means you are the one who loves her. You get to kiss her after a blood draw and to hold her in the night as she cries or comfort her after a seizure. You are her Mother and the only requirement of you is to love her unconditionally and to advocate for her passionately. Let the others do their job!"
With that advice, it became clear to me. In the world of special needs, none of us can do it alone. While I admire all the special needs moms who do stay home and who's lives revolve around the complex medical schedule of their child, I am thankful that I have found what works for me. I am thankful for Jenelle's wonderful therapists, teachers and doctors. And to borrow a phrase from that woman in the "other" political party, it takes a "village" to raise a special needs child.
One last thought... why is it the Mom has to be the one to stay home with the sick child? Why can't a man be as involved or more in the life of a special needs child? I know quite a few Fathers who play a very significant role in the life of their special needs child. Brett is one of them. While the divorce statistics are very real when it come to raising a special needs child, a couple has to take parenting to another level and become team players to work together when they have a special needs child. Eighty percent end up divorced, ninety percent if that special needs child dies. Those statistics are frightening, and very real! If parents can't work together, then they are only working against themselves.
So while this election has surprised me at times, I was shocked to see the discontent some women have for the choices other women make. Who are we to presume Sarah Palin isn't involved in the lives of all of her children? Who are we to demand she stay home and attend therapies with her disabled son? I'm positive Sarah Palin has the resources behind her to help her make the best decisions in regards to her special needs child. Maybe more than the average American. Who are we to question her love and devotion, when other families find it can work in non-traditional ways.
Why do women need to beat each other down for the choices they make? Personally, I'm tired of liberal women defining what women should be. Yes, I identify greatly with Sarah Palin. We are both working mothers with nothing but love for family and love for this country. God bless any family dealing with issues surrounding special needs and the individual choices special needs families have to make each day. Who are we to judge one another?
Before I go further, I will let you know now that I am a registered Republican, and I have already cast my vote for McCain/Palin via absentee ballot (sorry, you can't change my vote now!) But this issue is more than just politics to me. If I were supporting "the other guy", I would still be offended by a group of moms opposing another mom for her decision to follow her career. And by no means do I consider myself to be a feminist. I simply believe that a woman can have both; a career and children. And I know for a fact - it is possible that a Mom can work full time and raise a child with special needs. Especially a child with complex medical issues.
I will admit, I had no choice when I had to continue working when Jenelle's medical issues became a priority. My job carries the medical benefits we desperately needed at the time. I didn't have the luxury of quitting my job to attend to her needs 24/7. I had to find a way to make it work.
The first glaring questions about my continuing to work came from Jenelle's first neurologist. He flat out told me to quit my job so I could enjoy the few months or years we had left with Jenelle. This doctor refused to try the Ketogenic Diet for Jenelle, because in his words to me, "The fact that you are still working tells me you are not committed to your child and that you are not committed to do this diet!" It was horrible, and I cried for days. I felt like my job was an albatross hanging from my neck. Something I couldn't get rid of because I couldn't pay the medical bills.
And then, I received some of the best advice I'd ever heard from another special needs mom that works full time. She told me, "Kelly, your job is to be Jenelle's mother. You are not her doctor, nurse, teacher, therapist, bus driver, aide or social worker, you are her mother. That means you are the one who loves her. You get to kiss her after a blood draw and to hold her in the night as she cries or comfort her after a seizure. You are her Mother and the only requirement of you is to love her unconditionally and to advocate for her passionately. Let the others do their job!"
With that advice, it became clear to me. In the world of special needs, none of us can do it alone. While I admire all the special needs moms who do stay home and who's lives revolve around the complex medical schedule of their child, I am thankful that I have found what works for me. I am thankful for Jenelle's wonderful therapists, teachers and doctors. And to borrow a phrase from that woman in the "other" political party, it takes a "village" to raise a special needs child.
One last thought... why is it the Mom has to be the one to stay home with the sick child? Why can't a man be as involved or more in the life of a special needs child? I know quite a few Fathers who play a very significant role in the life of their special needs child. Brett is one of them. While the divorce statistics are very real when it come to raising a special needs child, a couple has to take parenting to another level and become team players to work together when they have a special needs child. Eighty percent end up divorced, ninety percent if that special needs child dies. Those statistics are frightening, and very real! If parents can't work together, then they are only working against themselves.
So while this election has surprised me at times, I was shocked to see the discontent some women have for the choices other women make. Who are we to presume Sarah Palin isn't involved in the lives of all of her children? Who are we to demand she stay home and attend therapies with her disabled son? I'm positive Sarah Palin has the resources behind her to help her make the best decisions in regards to her special needs child. Maybe more than the average American. Who are we to question her love and devotion, when other families find it can work in non-traditional ways.
Why do women need to beat each other down for the choices they make? Personally, I'm tired of liberal women defining what women should be. Yes, I identify greatly with Sarah Palin. We are both working mothers with nothing but love for family and love for this country. God bless any family dealing with issues surrounding special needs and the individual choices special needs families have to make each day. Who are we to judge one another?
Thursday, October 09, 2008
"LA LA LA LA LA LA LA!"
Last night, Brett and I were sitting at our dining room table chatting about the events of the day, when Jenelle walked up to the table, put her hands down on the table, looked at her Daddy and said, "la la la la la la la la la!"
We stopped talking mid sentence. I think my mouth dropped open. We stared at Jenelle and then looked at each other in disbelief. And then as if sensing our doubt, she did it again... and again!
Brett thinks it sounded more like a "ya ya ya ya ya ya" and I thought it had more of a "la" sound. Either way, she was definitely vocalizing. I immediately went to grab the camera to capture it on video and unfortunately stage fright took over. I am determined now however to catch it on video and will share it all with you when I do! Brett gave her the biggest hug and said, "Sweetie, we didn't know you had so much to say!" Which of course made her giggle.
Sometimes I wonder if Jenelle reads my updates as I just recently posted about my concern as to whether Jenelle will ever find spoke language. Or maybe Dr. Shields (who is the best pediatric neurologist in the world) is right and that given a little more time, Jenelle will continue to amaze us with her continued progress and speech for Jenelle is not a lost cause! Or maybe all of you are sending up the right prayers for our girl (keep it coming!) No matter what the reason, we will gladly take anything we can get from Jenelle.
As Jenelle's 6th birthday approaches, I can't help but look back on all that we lost with Jenelle because of the inadequacies of her first neurologist. What more could she be doing if we hadn't lost all that time searching for answers and jumping through hoops?
It took three years to see her smile, five years to see her walk, and now almost six years to finally hear her voice. A beautiful, angelic, sweet little voice trying desperately to say something to her Daddy.
Thank you for the thoughts and prayers - please keep them coming! ;)
We stopped talking mid sentence. I think my mouth dropped open. We stared at Jenelle and then looked at each other in disbelief. And then as if sensing our doubt, she did it again... and again!
Brett thinks it sounded more like a "ya ya ya ya ya ya" and I thought it had more of a "la" sound. Either way, she was definitely vocalizing. I immediately went to grab the camera to capture it on video and unfortunately stage fright took over. I am determined now however to catch it on video and will share it all with you when I do! Brett gave her the biggest hug and said, "Sweetie, we didn't know you had so much to say!" Which of course made her giggle.
Sometimes I wonder if Jenelle reads my updates as I just recently posted about my concern as to whether Jenelle will ever find spoke language. Or maybe Dr. Shields (who is the best pediatric neurologist in the world) is right and that given a little more time, Jenelle will continue to amaze us with her continued progress and speech for Jenelle is not a lost cause! Or maybe all of you are sending up the right prayers for our girl (keep it coming!) No matter what the reason, we will gladly take anything we can get from Jenelle.
As Jenelle's 6th birthday approaches, I can't help but look back on all that we lost with Jenelle because of the inadequacies of her first neurologist. What more could she be doing if we hadn't lost all that time searching for answers and jumping through hoops?
It took three years to see her smile, five years to see her walk, and now almost six years to finally hear her voice. A beautiful, angelic, sweet little voice trying desperately to say something to her Daddy.
Thank you for the thoughts and prayers - please keep them coming! ;)
Friday, October 03, 2008
Jenelle's Tri Annual IEP
(It has taken me a few days to draft this for you all. There was so much to discuss about the IEP, and our lives have been very busy of late. I'm sorry this update is long, but there are many good things to report. Enjoy!)
An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.
So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.
The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.
With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.
Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.
Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!
“Before we start this meeting, I’d like to say something. I hope you know that your daughter is an absolute miracle. In all my many years of being a physical therapist, I’ve had maybe one or two kids like Jenelle. I know that I should never put limits on a child, but when I first met Jenelle 3 years ago, I was convinced there was no way she would ever sit up, no way she could ever stand, and I certainly didn't expect she'd ever walk. Jenelle is an absolute miracle!” ~ Jenelle's Physical Therapist Sarah
An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.
So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.
The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.
With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.
Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.
Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!
Thursday, September 11, 2008
Routine update from trip to UCLA
As mentioned below, earlier this week we passed the 5 year "anniversary" of the day we got the news that Jenelle had epilepsy. I wish I could have told myself back then, that today we would be seizure free, as that might have made the journey a little easier. Today Jenelle had a follow up visit with Dr. Shields at UCLA, and when they asked the date of her last seizure, I really had to think long and hard about it. Jenelle's seizure control has been exceptional, and the last time I saw her have one was maybe a month or more ago. (And I'm knocking on wood as I type that, so you should knock on wood as you read it!)
After celebrating Jenelle's new achievements, and talking UCLA football with Brett, Dr. Shields discussed some of the new behavior issues we are seeing in Jenelle. Specifically, pulling out her hair, the biting, the crying and some small signs of possible early onset of puberty. The behavior stuff is easy to fix, and we are increasing her Risperdol to match her weight increase (Jenelle is now a whooping 48 pounds!) Jenelle ran out of Risperdol a few days ago, so I didn't re-fill it as I was waiting for this appointment. I honestly didn't think it was helping until last night I found a note in her backpack from her teacher asking if we had changed any medicines. Her teacher noted that she did not see the "self control" she had seen previously in Jenelle. That advice is enough for me to agree to give it a longer try.
As for the puberty issue, we have been told that children on seizure meds can often have an early onset, anywhere between age 6 to age 9. Jenelle will be 6 in October, so Dr. Shields thinks a referral to an endocrinologist is a good idea. We aren't anywhere near discussing something like "The Ashley Treatment" (where you can surgically remove female organs to avoid puberty), and Dr. Shields said there are some advantages to consider with early onset. He told us that research has shown for every year you avoid puberty, you guarantee at least 2 inches of growth in height. So if Jenelle were to enter puberty early, it might help keep her small. Again, we are no where near making any decisions about that, but we agree it would be best to start watching it closely now.
Everything else is going great and we will go back to see Dr. Shields in March of next year. Last week, Jenelle started school in the same class as last year with the same teacher. She seems to be happier back on her normal schedule. As for an update on the molars, one has finally cut through and another is giving us some problems. Now that we know what to look for, we've been helping her chew to get them to cut easier. So far, she seems to be taking it all in stride.
Five years ago, we had no idea what the road ahead would be for our Jenelle. The same is true today, but with the love, support, prayers and positive thoughts from all of you we know we will make it through. Thank you so much for everything.
As always, I'll keep you posted.
After celebrating Jenelle's new achievements, and talking UCLA football with Brett, Dr. Shields discussed some of the new behavior issues we are seeing in Jenelle. Specifically, pulling out her hair, the biting, the crying and some small signs of possible early onset of puberty. The behavior stuff is easy to fix, and we are increasing her Risperdol to match her weight increase (Jenelle is now a whooping 48 pounds!) Jenelle ran out of Risperdol a few days ago, so I didn't re-fill it as I was waiting for this appointment. I honestly didn't think it was helping until last night I found a note in her backpack from her teacher asking if we had changed any medicines. Her teacher noted that she did not see the "self control" she had seen previously in Jenelle. That advice is enough for me to agree to give it a longer try.
As for the puberty issue, we have been told that children on seizure meds can often have an early onset, anywhere between age 6 to age 9. Jenelle will be 6 in October, so Dr. Shields thinks a referral to an endocrinologist is a good idea. We aren't anywhere near discussing something like "The Ashley Treatment" (where you can surgically remove female organs to avoid puberty), and Dr. Shields said there are some advantages to consider with early onset. He told us that research has shown for every year you avoid puberty, you guarantee at least 2 inches of growth in height. So if Jenelle were to enter puberty early, it might help keep her small. Again, we are no where near making any decisions about that, but we agree it would be best to start watching it closely now.
Everything else is going great and we will go back to see Dr. Shields in March of next year. Last week, Jenelle started school in the same class as last year with the same teacher. She seems to be happier back on her normal schedule. As for an update on the molars, one has finally cut through and another is giving us some problems. Now that we know what to look for, we've been helping her chew to get them to cut easier. So far, she seems to be taking it all in stride.
Five years ago, we had no idea what the road ahead would be for our Jenelle. The same is true today, but with the love, support, prayers and positive thoughts from all of you we know we will make it through. Thank you so much for everything.
As always, I'll keep you posted.
Tuesday, September 09, 2008
5 years ago today...
Five years ago today, we received a phone call with news that changed our lives forever. Jenelle's neurologist called with results from her EEG indicating she had Infantile Spasms.
They say that time heals all wounds, and in some instances that has been true for us. Each year, this anniversary gets easier to pass for me, but this year is a little more difficult as I have been watching another child start a similar journey. I know the difficult road they have ahead and am thankful to have that part of the journey behind us.
When we got the news about Jenelle, I was relieved and a bit devastated. I was relieved that we finally had a name for what was going on, but devastated at what I read about her condition. Every parent hopes the best for their child and that is all we ever wanted for Jenelle. Part of me wishes I could go back in time to tell myself 5 years ago that it would be a difficult journey, but it would be OK. Jenelle is not perfect, and she is not seizure free, but she is healthy and she is OK. I realize now, once we controlled the seizures, Jenelle made more progress. I don't think we could have done anything differently, except maybe get her to be followed by the best expert in the country sooner than we did.
I watch videos of that first 24 hour EEG and can see so clearly now the seizures I missed all that time. I'll be honest in admitting that even with the EEG confirmation that Jenelle was having seizures, it took many months for me to begin to actually recognize what they looked like in person. I consider them subtle, silent thieves of my daughter's most precious moments during her development. To think of seizures being anything less than monstrous is an understatement.
Even with the good times we are enjoying now with her seizure control, it scares me to know that at any moment, without any warning, those seizures can rear their ugly head and take more away from our Jenelle. That fear does not stop me from enjoying the present, but it does help me remember to stay grounded and realistic.
If I had known 5 years ago what I know today, would the journey have been any easier? Probably not. But from our experience, I appreciate the hard times and rejoice in all that we've accomplished. Jenelle has more to prove to us all, and I am so proud for all she has taught me.
They say that time heals all wounds, and in some instances that has been true for us. Each year, this anniversary gets easier to pass for me, but this year is a little more difficult as I have been watching another child start a similar journey. I know the difficult road they have ahead and am thankful to have that part of the journey behind us.
When we got the news about Jenelle, I was relieved and a bit devastated. I was relieved that we finally had a name for what was going on, but devastated at what I read about her condition. Every parent hopes the best for their child and that is all we ever wanted for Jenelle. Part of me wishes I could go back in time to tell myself 5 years ago that it would be a difficult journey, but it would be OK. Jenelle is not perfect, and she is not seizure free, but she is healthy and she is OK. I realize now, once we controlled the seizures, Jenelle made more progress. I don't think we could have done anything differently, except maybe get her to be followed by the best expert in the country sooner than we did.
I watch videos of that first 24 hour EEG and can see so clearly now the seizures I missed all that time. I'll be honest in admitting that even with the EEG confirmation that Jenelle was having seizures, it took many months for me to begin to actually recognize what they looked like in person. I consider them subtle, silent thieves of my daughter's most precious moments during her development. To think of seizures being anything less than monstrous is an understatement.
Even with the good times we are enjoying now with her seizure control, it scares me to know that at any moment, without any warning, those seizures can rear their ugly head and take more away from our Jenelle. That fear does not stop me from enjoying the present, but it does help me remember to stay grounded and realistic.
If I had known 5 years ago what I know today, would the journey have been any easier? Probably not. But from our experience, I appreciate the hard times and rejoice in all that we've accomplished. Jenelle has more to prove to us all, and I am so proud for all she has taught me.
Subscribe to:
Posts (Atom)
Posts
