I am beginning to understand heartache.
Not always the type of heartache that hurts bad, but also the kind that hurts good; because real love does both.
You've taught me that.
At times over these past years, I've felt like my life has been hard. I've even felt like I've had more than my fair share of hard stuff..and it is high time someone paved an easy street road with my name on it.
But, then I think of you.
I've seen you make it..make it through some really tough stuff...over and over and over again.
People often comment to me, especially during times of challenges with Deak, "Wow...you must be really strong."
I consistently have the same thought, "No, I just do it."
Because, that's what you do.
You fight through it, lose some sleep in the process, but you make it.
I am just at the beginning of my journey into motherhood; the sarcastic eye rolls and sleepless nights haven't yet compared to yours.
But, I am beginning to understand.
An understanding of the depth of love and strength it will take to get my babies to the place you have been able to get me to.
And, I know...I do a terrible job of recognizing your role in my life on a daily basis.
But, it is there...and I am here...just because of your example.
Happy Mother's Day.
Love,
Jenny
Saturday, May 8, 2010
Wednesday, May 5, 2010
Highs and Lows.
Life is full of them.
(At least that is what I keep trying to say to myself.)
When I went into the field of psychology ten or so years ago, I began working with youth who were involved in the secure care correctional system. I co-lead a group for youth recovering from serious drug and alcohol problems, and we always began by sharing a high and a low for the week. Although it sounds simple, it can be a pretty powerful technique for kids who are not typically used to looking for anything positive in their lives. Sometimes the high was quite simply, Being Alive.
I've continued to use the exercise as an ice-breaker in the groups I run with elementary students, and have been overjoyed at the weeks I have to stop them from sharing too many highs. It makes me happy to remember times when the "Highs" way outnumbered the lows.
I've put off posting/talking/etc...because I don't want to sound negative. I don't want to feel negative. I am working really hard at focusing on my highs (of which there are an abundant amount) and choosing to let the negative simmer quietly inside my heart. So, in doing this post, before discussing anything stressful, I am choosing to list a high first. I'm hopeful it will help my heart and evil irrational brain process life a little more clearly.
High:
Abby rocks.
She just does. She conquered her back handspring on the mat at cheer with no spot, and has re-entered her role as flyer (which scares the living daylight out of her mother). She has spent hours in preparation for Deak's upcoming birthday and has already bought (with her own money) and wrapped his gifts (They are currently in position on the fireplace). She made me a card on Monday that said, "You are a nice mom." It made me cry. Many of you may get these types of notes often from your kiddos, but Ab chooses not to overuse emotional sentiments...so I knew this was from her heart.
Low:
There are not enough hours in the day.
Between work, doctors appointments and driving, I barely have time to breath and pee. I have such good intentions and try so hard to be over-ambitious and accomplish 510 things...but, it's so not working out. I just can't do it all.
High:
Mother's intuition is real.
Listen to it. It will never, ever, fail you.
Low:
Mother's intuition sometimes leads to stressful consequences.
We have been presented with a new Deak issue. Last week, something was "off" about him. He wasn't terribly sick, but he wasn't himself; his eyes began showing some strange neurological signs (nystagmus) that haven't appeared since he was a newborn, and he was just very tired. After five or so days of waiting and "watching" I decided to take him to our pediatrician on Monday.
High:
Our pediatrician is sent from Heaven.
He is kind, gentle, generous and extremely thorough - especially with Deak.
Low:
Thorough typically means tests and eventual results.
Poor Deak. His veins are terrible and tiny. Our doctor, whom I love as if he were family, chooses to draw blood from the veins in his skull....and it is just horrific to watch. There are less nerve endings in the head, than in the arm or hand - but it looks just as awful as it sounds, and it sure as hell doesn't feel good. Deak has now had to have blood drawn four times this week (from his head), and the last one has left me with blood on my hands, and countless kicks to my stomach. This has been the only time I've had to peel Deak off me, screaming and yelling for me...and the only time I've teared up on a blood draw to date.
It killed me.
I tried to tell Deak how strong and brave he was as I held him on the way out to the car.
I didn't make it.
High:
Of all the organs, I've decided the liver is the most expendable.
(I wouldn't call this a medical fact.)
Low:
The liver can still cause some problems.
We've discovered Deak's liver enzymes (both types) are extremely high.
By extremely high, I actually mean this:
Normal 10-48
Deak 1100 and 1200 respectively.
The doctor and nurse have said they have never seen a level that high in their career.
Dang Deak and his over achieving odds.
As of now, we do not know why...more tests are being ran...and ran...and ran...
But, we know it's not Mono or any of the Hepatitis's.
Which is good.
The levels have been re-tested today in the slim hope that possibly the lab made an error, and to see if there have been any change in two days, but sadly our doctor and I both know this is most likely not the case.
So...the search is on to discover why Deak's little ring chromosome has decided to make an appearance in his liver.
...and that is all for now. My list of highs/lows could go on a bit more...but, I'm trying to focus on one stress-inducing event at a time.
It's all about balance, right?
(At least that is what I keep trying to say to myself.)
When I went into the field of psychology ten or so years ago, I began working with youth who were involved in the secure care correctional system. I co-lead a group for youth recovering from serious drug and alcohol problems, and we always began by sharing a high and a low for the week. Although it sounds simple, it can be a pretty powerful technique for kids who are not typically used to looking for anything positive in their lives. Sometimes the high was quite simply, Being Alive.
I've continued to use the exercise as an ice-breaker in the groups I run with elementary students, and have been overjoyed at the weeks I have to stop them from sharing too many highs. It makes me happy to remember times when the "Highs" way outnumbered the lows.
I've put off posting/talking/etc...because I don't want to sound negative. I don't want to feel negative. I am working really hard at focusing on my highs (of which there are an abundant amount) and choosing to let the negative simmer quietly inside my heart. So, in doing this post, before discussing anything stressful, I am choosing to list a high first. I'm hopeful it will help my heart and evil irrational brain process life a little more clearly.
High:
Abby rocks.
She just does. She conquered her back handspring on the mat at cheer with no spot, and has re-entered her role as flyer (which scares the living daylight out of her mother). She has spent hours in preparation for Deak's upcoming birthday and has already bought (with her own money) and wrapped his gifts (They are currently in position on the fireplace). She made me a card on Monday that said, "You are a nice mom." It made me cry. Many of you may get these types of notes often from your kiddos, but Ab chooses not to overuse emotional sentiments...so I knew this was from her heart.
Low:
There are not enough hours in the day.
Between work, doctors appointments and driving, I barely have time to breath and pee. I have such good intentions and try so hard to be over-ambitious and accomplish 510 things...but, it's so not working out. I just can't do it all.
High:
Mother's intuition is real.
Listen to it. It will never, ever, fail you.
Low:
Mother's intuition sometimes leads to stressful consequences.
We have been presented with a new Deak issue. Last week, something was "off" about him. He wasn't terribly sick, but he wasn't himself; his eyes began showing some strange neurological signs (nystagmus) that haven't appeared since he was a newborn, and he was just very tired. After five or so days of waiting and "watching" I decided to take him to our pediatrician on Monday.
High:
Our pediatrician is sent from Heaven.
He is kind, gentle, generous and extremely thorough - especially with Deak.
Low:
Thorough typically means tests and eventual results.
Poor Deak. His veins are terrible and tiny. Our doctor, whom I love as if he were family, chooses to draw blood from the veins in his skull....and it is just horrific to watch. There are less nerve endings in the head, than in the arm or hand - but it looks just as awful as it sounds, and it sure as hell doesn't feel good. Deak has now had to have blood drawn four times this week (from his head), and the last one has left me with blood on my hands, and countless kicks to my stomach. This has been the only time I've had to peel Deak off me, screaming and yelling for me...and the only time I've teared up on a blood draw to date.
It killed me.
I tried to tell Deak how strong and brave he was as I held him on the way out to the car.
I didn't make it.
High:
Of all the organs, I've decided the liver is the most expendable.
(I wouldn't call this a medical fact.)
Low:
The liver can still cause some problems.
We've discovered Deak's liver enzymes (both types) are extremely high.
By extremely high, I actually mean this:
Normal 10-48
Deak 1100 and 1200 respectively.
The doctor and nurse have said they have never seen a level that high in their career.
Dang Deak and his over achieving odds.
As of now, we do not know why...more tests are being ran...and ran...and ran...
But, we know it's not Mono or any of the Hepatitis's.
Which is good.
The levels have been re-tested today in the slim hope that possibly the lab made an error, and to see if there have been any change in two days, but sadly our doctor and I both know this is most likely not the case.
So...the search is on to discover why Deak's little ring chromosome has decided to make an appearance in his liver.
...and that is all for now. My list of highs/lows could go on a bit more...but, I'm trying to focus on one stress-inducing event at a time.
It's all about balance, right?
Sunday, April 25, 2010
Not okay.
I sat in a meeting for my Deak, at his school, this past Friday.
"We are concerned for his safety a lot, because honestly we as staff are scared of a few of the kids in this room."
"When he cries, you know if he gets hurt, he is really hard to console."
And as far as positive comments:
"As far as progress, well...he cries less now."
Really? How about his laughing and talking and walking and crawling?
This is what I listened to for a good forty-five minutes. Really.
It was as if they were talking about some alien child I had never met. I am pretty sure that if I was concerned for my safety, I would cry too...and hurt? I had never been told once when picking Deak up that he had gotten hurt.
Oh....and there is more....but, my heart can't take it anymore this weekend.
I sat there in full mother armour, heart in pocket, with a painted, plastic face and pretended I was sympathetic to their needs as preschool teachers.
I am not. They signed up for this job. They should do it. They should love it.
I wanted to punch them in their faces.
As far as they know, I left happy; content with the direction we were heading with Deak and his Special Education preschool program.
They don't know how hard I cried when I left.
They don't love my Deak, in fact, afterwards I wondered if they even liked him. This is a place I had willingly been taking my son 3-4 afternoons a week in an attempt to better his life. I can't help but think I've made a horrible choice. This mother guilt thing that comes with the territory has completely lost its' sense of balance and I've beat myself up pretty badly.
But, for now, all I can do is move forward, find a new school that hopefully does not cost tens of thousands of dollars, and hope Deak is happy his last few weeks of school.
It is just never, ever okay to hear and feel these things. Ever.
It is absolutely the hardest part of having a child with special needs.
Not the doctors, or surgeries, or lack of communication.
It's this.
The people who forget that Deak is a child. My child. And, he has the right to learn and feel safe and feel loved...regardless of whether or not it requires a little more effort to carry him and walk him in his walker.
Really, how can Deak not be loved? I just don't understand it.
"We are concerned for his safety a lot, because honestly we as staff are scared of a few of the kids in this room."
"When he cries, you know if he gets hurt, he is really hard to console."
And as far as positive comments:
"As far as progress, well...he cries less now."
Really? How about his laughing and talking and walking and crawling?
This is what I listened to for a good forty-five minutes. Really.
It was as if they were talking about some alien child I had never met. I am pretty sure that if I was concerned for my safety, I would cry too...and hurt? I had never been told once when picking Deak up that he had gotten hurt.
Oh....and there is more....but, my heart can't take it anymore this weekend.
I sat there in full mother armour, heart in pocket, with a painted, plastic face and pretended I was sympathetic to their needs as preschool teachers.
I am not. They signed up for this job. They should do it. They should love it.
I wanted to punch them in their faces.
As far as they know, I left happy; content with the direction we were heading with Deak and his Special Education preschool program.
They don't know how hard I cried when I left.
They don't love my Deak, in fact, afterwards I wondered if they even liked him. This is a place I had willingly been taking my son 3-4 afternoons a week in an attempt to better his life. I can't help but think I've made a horrible choice. This mother guilt thing that comes with the territory has completely lost its' sense of balance and I've beat myself up pretty badly.
But, for now, all I can do is move forward, find a new school that hopefully does not cost tens of thousands of dollars, and hope Deak is happy his last few weeks of school.
It is just never, ever okay to hear and feel these things. Ever.
It is absolutely the hardest part of having a child with special needs.
Not the doctors, or surgeries, or lack of communication.
It's this.
The people who forget that Deak is a child. My child. And, he has the right to learn and feel safe and feel loved...regardless of whether or not it requires a little more effort to carry him and walk him in his walker.
Really, how can Deak not be loved? I just don't understand it.
Wednesday, April 14, 2010
Blahness Override.
Guess what...?
Right after I wrote the post yesterday, a darling parent of a child I work regularly with said to me with tears in her eyes,
"I just want you to know that we pray thanks for you every single night for being in our lives."
Little did she know how badly I needed those prayers and words.
Then, when I thought it couldn't get better...the principal of the school I work at, and the school Abby goes to, let me know that she had watched Abby make room and offer to share a seat (one seat stool, to be exact) with another little girl who couldn't find a place to sit in the lunchroom. No one even asked her to.
The thought of those two tiny bums squeezed together on one stool, due to my sweet girl's kind heart... made me double happy.
Those little tiny acts of kindness...I promise, they go a long, long way.
It was impossible to be unhappy after that.
Right after I wrote the post yesterday, a darling parent of a child I work regularly with said to me with tears in her eyes,
"I just want you to know that we pray thanks for you every single night for being in our lives."
Little did she know how badly I needed those prayers and words.
Then, when I thought it couldn't get better...the principal of the school I work at, and the school Abby goes to, let me know that she had watched Abby make room and offer to share a seat (one seat stool, to be exact) with another little girl who couldn't find a place to sit in the lunchroom. No one even asked her to.
The thought of those two tiny bums squeezed together on one stool, due to my sweet girl's kind heart... made me double happy.
Those little tiny acts of kindness...I promise, they go a long, long way.
It was impossible to be unhappy after that.
Tuesday, April 13, 2010
Blah.
That sums up my mood.
I know, I preach the positivity vibe all too often on this blog.
But, let's be honest. I don't practice it ALL.THE.TIME.
It's just not reality.
The interesting part is that I understand I am making a conscious choice to be filled with blahness; I have reflected to the point of exhaustion and basically, I just don't really give a crap.
I played Norah Jones as I drove to work today as an attempt to add some peace to my mind. I found myself laughing cynically and beginning imaginary fights with the people whom the lyrics described as romantic.
Ah...romance. That was a lovely time. But, not the season of life at the moment.
I think Jay-Z and his 99 problems are a little more up my alley today.
I always up for a vicarious f bomb and loud bass.
Plus, Deak will be happy with the song choice...he was a getting a little fed up with Norah himself.
I know, I preach the positivity vibe all too often on this blog.
But, let's be honest. I don't practice it ALL.THE.TIME.
It's just not reality.
The interesting part is that I understand I am making a conscious choice to be filled with blahness; I have reflected to the point of exhaustion and basically, I just don't really give a crap.
I played Norah Jones as I drove to work today as an attempt to add some peace to my mind. I found myself laughing cynically and beginning imaginary fights with the people whom the lyrics described as romantic.
Ah...romance. That was a lovely time. But, not the season of life at the moment.
I think Jay-Z and his 99 problems are a little more up my alley today.
I always up for a vicarious f bomb and loud bass.
Plus, Deak will be happy with the song choice...he was a getting a little fed up with Norah himself.
Friday, April 9, 2010
Easter 2010
Although I am not quite sure of the reasoning, be it age or the fact that I am working a little more outside of the home this year, but for whatever reason...I truly have enjoyed every second of the Holiday and the time I've spent with my family.
My kids are just at great ages. Ab is turning into this awesome mature young girl, and Deak is discovering new ways to be independent every single day.
To sum it up...I just feel very content.
This past Easter weekend was wonderful. I love when Easter weekend and our General Conference weekend coincide. There is just something so special about hearing the words of my Prophet while sitting with my loves. We shared the time with family, celebrated my gorgeous mother's birthday and I even continued a tradition of making a yummy orange-honey glazed ham. I am most proud of this tradition because it is one of the few that I have began with my little family. Abby even asked if "we were going to have the ham this year."
A few of the Highlights:
Howe Easter BBQ and Hunt
Gma Payne's Birthday
Egg Dying
Easter Zhu's Zhu's (Deak tried to steal them...and has continued to, all week!)
Easter Morning
Payne Fam Easter Hunt and Dinner
(Yes, I needed my bangs cut...desperately.)
He LOVED putting eggs in his basket. His first year to do it independently...it was lovely. I cried lots.
Abby loves these butterfly nets...Blair thinks they can be used as a weapon more often than not.
I mean, how could one not have a great time? What an awesome weekend.
Tuesday, March 30, 2010
In Honor of Deak...
Dear Family and Friends,
The Chromosome 18 Registry and Research Society holds an annual fundraiser entitled, “The Phantom Tea party.” It’s premise being as that we might take one day out of a year, in honor of our loved one affected with a Chromosome 18 abnormality, and choose to pass on an act or service or give a donation. It is a phantom party because it does not require fancy clothes and attendance, just a simple moment to pause. I’ve hesitated the past few years to participate in this fundraiser; certainly not because I do not believe whole-heartily in its’ importance, but because I empathize with our individual family struggles to get by daily. I’ve hated to ask you to sacrifice any more than you already are. This year, being as that my instincts tend to overpower my rational thought, I’ve decided to give it a try and hopefully give an opportunity for this wonderful organization to fund some more research. Research that has undeniablally changed my life.
“Profoundly Retarded”
Those were the words that would resonate after the cold and blizzard-like February morning my life forever changed. No words of comfort were given; no meaningful gestures or signs of hope, just cold-hearted terms and grim medical statistics.
My husband and I were strongly encouraged to terminate the life of our baby boy – our boy. We were told his life was going to end regardless and would have no quality even if it made it to term. In fact, we were lead to believe his life would be a disservice to humanity and to our families’ lives.
You don’t prepare for something like this. You can’t. I did not sign up on a roster sheet and volunteer to have my heart torn to shreds. Albeit, life happens, and we get to make choices; choices that ultimately determine our consequences, and choices that allow us to learn, grow and experience worlds we were not aware existed.
Blair and I made a choice in that moment; a decision of our hearts. We knew without a doubt that this boy was ours, and we prayed that we would be able to hold his body and kiss his cheeks. We didn’t care about his nose, or cute little funky toes…we just wanted to be given the opportunity to love him.
During the months that followed, test results were given and we discovered Deakon had an extremely rare Chromosomal abnormality, simply titled Ring 18 syndrome. Basically, the second chromosome in his 18th pair had broken at the ends and formed itself in the shape of a circle. Needless to say, hours upon hours were spent on the Internet; reaching for any beacon of hope I could find. During my search, I stumbled across the website www.chromosome18.org, and read the following mission statement:
Our mission is to help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead happy, healthy and productive lives.
Although I don’t remember exactly, I am nearly positive I cried. What a difference this statement was in comparison to the words the specialists were choosing to use. Through this website and its’ resources, I was able to connect with families who had children with Ring 18 Syndrome and other chromosome 18 abnormalities. Pieces of my heart began returning, and hope was beginning to be restored.
Deakon is now nearly four…FOUR years old. He is beautiful and happy and sweet natured. He freely gives kisses and whispers, “Mama, I la ya (I love you.)” In fact, rare a morning goes by without me hearing it. Deak loves music, especially the Black Eyed Peas, and lives for his favorite TV show, Yo Gabba Gabba. He crawls around, creates mischief for his amazing big sister, Abby, and walks like he has something to prove in his awesome green walker.
He is a light of pure joy in my day. Watching him develop and grow, overcome his challenges, and work his cute little bum off has been the most amazing experience of my life. His will pushes me to work harder, prioritize better and love more effectively every single day.
Deakon’s life is anything but a disservice to our family, and Deak is anything but retarded.
He is an example of who I wish I could become.
Although Blair and I had made a choice, I am forever indebted to the Chromosome 18 Registry and Research Society for the restoration of Hope that was given to my broken heart. I am so grateful for the positive attitudes and assertive drive that began medical and genetic research twenty years ago. Medical research in an area that is considered non-commercial and unprofitable. Research through which my son was advised to begin medical growth hormone treatment that has drastically improved his life.
The connections I have made with families, through the aid of the registry have been life and sanity saving. They are family…sealed with a Chromosome 18 gift.
That is why my heart has not let this go this year. I understand that many of you will not be able to donate money, and please understand that is okay. My hope is that we may turn a simple thought or act of kindness to another individual on this day, and perhaps even allow a thought or prayer to be said for the families and research association that have changed my life for the better.
That being said, please join us in spirit, to celebrate the lives of these amazing people living with Chromosome 18 abnormalities:
Date: Saturday May 15th, Deakon’s fourth birthday
Hour: Anytime that suits you
RSVP: As you can, with a prayer or check. Donations are tax-deductible, and receipts will be mailed to you.
Please make checks payable to:
The Chromosome 18 Registry and Research Society
Mail to our Home: 931 South View Crest Lane
Kaysville, Utah 84037
Please visit www.chromosome18.org for more information.
With love,
Jenny, Blair, Abby and especially…Deakon
Those were the words that would resonate after the cold and blizzard-like February morning my life forever changed. No words of comfort were given; no meaningful gestures or signs of hope, just cold-hearted terms and grim medical statistics.
My husband and I were strongly encouraged to terminate the life of our baby boy – our boy. We were told his life was going to end regardless and would have no quality even if it made it to term. In fact, we were lead to believe his life would be a disservice to humanity and to our families’ lives.
You don’t prepare for something like this. You can’t. I did not sign up on a roster sheet and volunteer to have my heart torn to shreds. Albeit, life happens, and we get to make choices; choices that ultimately determine our consequences, and choices that allow us to learn, grow and experience worlds we were not aware existed.
Blair and I made a choice in that moment; a decision of our hearts. We knew without a doubt that this boy was ours, and we prayed that we would be able to hold his body and kiss his cheeks. We didn’t care about his nose, or cute little funky toes…we just wanted to be given the opportunity to love him.
During the months that followed, test results were given and we discovered Deakon had an extremely rare Chromosomal abnormality, simply titled Ring 18 syndrome. Basically, the second chromosome in his 18th pair had broken at the ends and formed itself in the shape of a circle. Needless to say, hours upon hours were spent on the Internet; reaching for any beacon of hope I could find. During my search, I stumbled across the website www.chromosome18.org, and read the following mission statement:
Our mission is to help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead happy, healthy and productive lives.
Although I don’t remember exactly, I am nearly positive I cried. What a difference this statement was in comparison to the words the specialists were choosing to use. Through this website and its’ resources, I was able to connect with families who had children with Ring 18 Syndrome and other chromosome 18 abnormalities. Pieces of my heart began returning, and hope was beginning to be restored.
Deakon is now nearly four…FOUR years old. He is beautiful and happy and sweet natured. He freely gives kisses and whispers, “Mama, I la ya (I love you.)” In fact, rare a morning goes by without me hearing it. Deak loves music, especially the Black Eyed Peas, and lives for his favorite TV show, Yo Gabba Gabba. He crawls around, creates mischief for his amazing big sister, Abby, and walks like he has something to prove in his awesome green walker.
He is a light of pure joy in my day. Watching him develop and grow, overcome his challenges, and work his cute little bum off has been the most amazing experience of my life. His will pushes me to work harder, prioritize better and love more effectively every single day.
Deakon’s life is anything but a disservice to our family, and Deak is anything but retarded.
He is an example of who I wish I could become.
Although Blair and I had made a choice, I am forever indebted to the Chromosome 18 Registry and Research Society for the restoration of Hope that was given to my broken heart. I am so grateful for the positive attitudes and assertive drive that began medical and genetic research twenty years ago. Medical research in an area that is considered non-commercial and unprofitable. Research through which my son was advised to begin medical growth hormone treatment that has drastically improved his life.
The connections I have made with families, through the aid of the registry have been life and sanity saving. They are family…sealed with a Chromosome 18 gift.
That is why my heart has not let this go this year. I understand that many of you will not be able to donate money, and please understand that is okay. My hope is that we may turn a simple thought or act of kindness to another individual on this day, and perhaps even allow a thought or prayer to be said for the families and research association that have changed my life for the better.
That being said, please join us in spirit, to celebrate the lives of these amazing people living with Chromosome 18 abnormalities:
Date: Saturday May 15th, Deakon’s fourth birthday
Hour: Anytime that suits you
RSVP: As you can, with a prayer or check. Donations are tax-deductible, and receipts will be mailed to you.
Please make checks payable to:
The Chromosome 18 Registry and Research Society
Mail to our Home: 931 South View Crest Lane
Kaysville, Utah 84037
Please visit www.chromosome18.org for more information.
With love,
Jenny, Blair, Abby and especially…Deakon
*My apolgies to those of you who are recieving a paper copy as well:)
Subscribe to:
Posts (Atom)