Layla's been assessed as "severely disabled".
This assessment came with ensuring her eligibility for a number of benefits. So I get the need to mark her disability on the scale so we can optimize her opportunities for resources to provide for her needs.
Reading that though was bleak. So, take a deep breathe, sweep that piece of information away to the pile that it belongs in and we look at what else she is severely. Her eyelashes are severely long and lovely, and she has a severely infectious smile.
She can hear her sister Sabrina's severe growls and Maya's severely odd air guitar solos (it's happening behind me now as I type).
I have a severely great family - add that to the assessments!
Friday, June 25, 2010
Sunday, June 13, 2010
Family Ties
My sister in law and her children are here visiting for a few weeks. She is special and has been a part of my life in a unique and memorable way. Paula is a mother and a coach to me and is a gift to many people, especially her children. She is kind of like the child whisper and demonstrates a compassion and intimacy of parenthood that I wouldn't have otherwise known is possible. Before children were on my radar, I knew that her parenting skills would impact me when that time came and boy has it ever. I am lucky beyond words to have her in my life. Immediately after Layla's birth there were a spiral of events that I did not see coming if someone had told me - sort of like when I was pregnant with Maya and I purposely skipped reading the section on episiotomies, because THAT wouldn't happen to me...... oh thank heaven for sitz baths and donut rings is all that I can say about that! - and wasn't prepared for. She was right there by my side and I expressed to her my sadness that "they took my baby, they took my baby". And somehow, by her being there, I felt cushioned amidst fear and heart pressing pain. I'll never forget that moment and I am forever grateful that she was right there - she got it completely. She didn't try to reassure me or stop my heartache, she just felt it, like it was happening to her.
Now she continues to be a mentor to me in many ways. Marrying Michael gave me the gift of his family. I love you all sincerely, you are mine....
I wish that all my girls, my fellow mothers and soul sisters have the gift of extended family, those that also love your children like you do.
Welcome home Paula, Richard, Kiera and Kaelan - welcome home with love.
Now she continues to be a mentor to me in many ways. Marrying Michael gave me the gift of his family. I love you all sincerely, you are mine....
I wish that all my girls, my fellow mothers and soul sisters have the gift of extended family, those that also love your children like you do.
Welcome home Paula, Richard, Kiera and Kaelan - welcome home with love.
Friday, June 4, 2010
Up
We are up Layla and I. She was startled by the sound of her big bad fart. Made me jump off of my computer chair / kitchen bar stool.
Lately, my inspiration has been running a little thin admittedly. More on my mental tray is Maya's 7th birthday. She's a good kid that one. I do the shaking the head when I look at her with undivided attention - so pretty much rarely - but when I do the head shakes. It shakes for the celebration of her making it to age 7 in one nice package. When she turned 5, Michael and I hi-5'ed "we did it!" We made it to a child turning 5 and she has survived!!
She is our gentle giant, our tender heart, our Pisces. That is a sign of sensitivity and ego. She reminds me of an old dear friend that was born the very same day but many years ahead. My college sweetheart - she was a she. No not a college thing. Rather another one of my life loves in the form of a friend Anyhow, Maya reminds me of her so much that on a few occasions now, I've turned to look at Maya and caught a likeness of my DOF (dear old friend).
A few months after she was born and right in the depths of post-partum bliss, I called DOF (we hadn't spoken in years) and cried. I said that my baby moved me to make the call and weep. Women, we are an odd bunch.
Maya is a good big sister in a clearly demanding lead role. Positively Oscar worthy. Special needs baby sister and off-the-wall mildly abusive younger sister. Sabrina's bark is as loud as her bite whereas Maya has neither. No bark, no bite, just drama and the propensity to fear the unknown. Sabs will jump in and deal with the emotional flames as they hit her. Maya has a quiet cautiousness to her. Many times she is the family's voice of reason. Lately however there has been an undeniable shift. The gap between her and her younger sis has widened develomentally and intellectually. With the exception of heading up to her room by herself - Sabrina always and still needs to lead the way.
Lately, my inspiration has been running a little thin admittedly. More on my mental tray is Maya's 7th birthday. She's a good kid that one. I do the shaking the head when I look at her with undivided attention - so pretty much rarely - but when I do the head shakes. It shakes for the celebration of her making it to age 7 in one nice package. When she turned 5, Michael and I hi-5'ed "we did it!" We made it to a child turning 5 and she has survived!!
She is our gentle giant, our tender heart, our Pisces. That is a sign of sensitivity and ego. She reminds me of an old dear friend that was born the very same day but many years ahead. My college sweetheart - she was a she. No not a college thing. Rather another one of my life loves in the form of a friend Anyhow, Maya reminds me of her so much that on a few occasions now, I've turned to look at Maya and caught a likeness of my DOF (dear old friend).
A few months after she was born and right in the depths of post-partum bliss, I called DOF (we hadn't spoken in years) and cried. I said that my baby moved me to make the call and weep. Women, we are an odd bunch.
Maya is a good big sister in a clearly demanding lead role. Positively Oscar worthy. Special needs baby sister and off-the-wall mildly abusive younger sister. Sabrina's bark is as loud as her bite whereas Maya has neither. No bark, no bite, just drama and the propensity to fear the unknown. Sabs will jump in and deal with the emotional flames as they hit her. Maya has a quiet cautiousness to her. Many times she is the family's voice of reason. Lately however there has been an undeniable shift. The gap between her and her younger sis has widened develomentally and intellectually. With the exception of heading up to her room by herself - Sabrina always and still needs to lead the way.
My Space vs World Space
Welcome Springtime. Layla's coming up to a year old. Her capacity, at a 4 to 5 month old. In many ways she has bloomed; a natural response to our nurturing weather over the past few weeks. We've been making sure that she is well watered and getting plenty of sun.
I've been thinking a lot this past week about this excitement that I feel over where my life is headed; the world of disability. The parents that I will meet and the stories that I'm going to share. But, right now I've enjoyed the not knowing - the "my space" versus the world space and the language of disability that I just don't even know of yet. But I will. I want to. There is so much to discover. That world is for me. It is not so foreign,
John Travolta's son past away after a seizure episode. I clearly remember thinking why do these celebrities "hide" their disabled children. That they must feel ashamed of them, somehow their "different" children must stifle their image. Why bring them to the forefront. We used to hear of his daughter enough. Well I suppose this is all part of the greater P.R. plan.
Now.
Maybe he was protecting his child. Hyper protecting. I won't move forward advertising Layla's life to everyone who looks at her quizzingly. And they may do that. As she gets older, month by month, her age to development gap is getting greater. It will, I know. She will be noticed, not for her slick moves on the soccer field, or for her sweet camera ready smile when there is photo opportunity. Nope, that is her sisters. People will look at Layla and wonder. And I will protect her innocence and her inability to be "normal". Her differences won't make obvious sense and will make her noticable. I want to shelter her from the thoughts. I think I get the silence now. I'm no celebrity, I just have a special child with needs that you have to live with and cope with in order to understand. It's all about protecting the rights that they aren't even aware that they have.
I've been thinking a lot this past week about this excitement that I feel over where my life is headed; the world of disability. The parents that I will meet and the stories that I'm going to share. But, right now I've enjoyed the not knowing - the "my space" versus the world space and the language of disability that I just don't even know of yet. But I will. I want to. There is so much to discover. That world is for me. It is not so foreign,
John Travolta's son past away after a seizure episode. I clearly remember thinking why do these celebrities "hide" their disabled children. That they must feel ashamed of them, somehow their "different" children must stifle their image. Why bring them to the forefront. We used to hear of his daughter enough. Well I suppose this is all part of the greater P.R. plan.
Now.
Maybe he was protecting his child. Hyper protecting. I won't move forward advertising Layla's life to everyone who looks at her quizzingly. And they may do that. As she gets older, month by month, her age to development gap is getting greater. It will, I know. She will be noticed, not for her slick moves on the soccer field, or for her sweet camera ready smile when there is photo opportunity. Nope, that is her sisters. People will look at Layla and wonder. And I will protect her innocence and her inability to be "normal". Her differences won't make obvious sense and will make her noticable. I want to shelter her from the thoughts. I think I get the silence now. I'm no celebrity, I just have a special child with needs that you have to live with and cope with in order to understand. It's all about protecting the rights that they aren't even aware that they have.
Mother's Day
About Motherhood
by Kahlil Gibran
by Kahlil Gibran
Everything in nature bespeaks the mother. The sun is the mother of the earth and gives it its nourishment of heat; it never leaves the universe at night until it has put the earth to sleep to the song of the sea and the hymn of the birds and brooks. And this earth is the mother of trees and flowers. It produces them, nurses them, and weans them. The trees and flowers become kind mothers of their great fruits and seeds. And the mother, the prototype of all existence, is the eternal spirit, full of beauty and love.
The Start of the Second
Layla's onto the second year of her life. Happy Birthday Sunshine! On April 17th, the whole family of us did a loud "yay team!" What a year.
A great year. Really, it was exciting. I feel like I am back in that hospital, in the special care unit, in my little room with my daughter with a certain numbness in my brain. Now that numb comes from chronic fatigue and the buzz sound is coming from the auto pilot button which is ON.
We function, it is fun functioning.
Monday is Layla's first surgery and the soft top will be upgraded to the non-convertable model. Can't wait. Actually, now that I think about it, I can wait. I'm used to her this way. We shall get used to the new and modified her.
After the surgery, I think I'll celebrate her birthday properly. Perhaps I'll go for that walk on the beach that I've been craving. Or, I'll go get my nails done, ooh and highlites! Don't remember the last time I had that. Maybe I'll do it all.....
A great year. Really, it was exciting. I feel like I am back in that hospital, in the special care unit, in my little room with my daughter with a certain numbness in my brain. Now that numb comes from chronic fatigue and the buzz sound is coming from the auto pilot button which is ON.
We function, it is fun functioning.
Monday is Layla's first surgery and the soft top will be upgraded to the non-convertable model. Can't wait. Actually, now that I think about it, I can wait. I'm used to her this way. We shall get used to the new and modified her.
After the surgery, I think I'll celebrate her birthday properly. Perhaps I'll go for that walk on the beach that I've been craving. Or, I'll go get my nails done, ooh and highlites! Don't remember the last time I had that. Maybe I'll do it all.....
The Inspirors
There are moments that happen that if we don't pay attention to them, we miss out. I had a few run ins that left me with a feeling of elevation.
Many people provide me with gems of inspiration and I'd like to talk about them and all that they give me. There are so many of you all around me and I honestly love you all.
I'd like to start with "Betty"
Within 5 minutes of talking we are knee deep into our lives. We are acquaintences and have this special way of filling each other in with all the knitty gritty details in a very short matter of time. She is going through some challenging times right now within her immediate family and she expressed how it is making her feel in a very understandable way; when a family member is in pain, the entire family feels it. The interesting thing is that there is another feeling that she is experiencing - thoughts of frustration and anger towards the person who is suffering. She is uncomfortable with those thoughts but they are there and very real to her.
She told me and acknowledged that it was hard to admit to those feelings and that those emotions are selfish and that she has to put them out of her mind.
I told her how I read a great article on parenting related to special needs - i.e. my life obsession right now - and how all the emotions - all of them, whatever the mix may be - shouldn't be judged but should be felt, acknowledged and that we should in fact swim in them for a moment. It is easier to push forward once we do. You have to get to that dark place and see it staring back at you so that you can live in that moment of that very experience. Take it in, cry, whatever, just acknowledge the shittiness of it and that way it can't really fester moving forward. It is hard to explain. But I guess my point and what I shared much more eloquently to "Betty" was that it is ok and necessary for people to go there. It can get easier quicker once you've done that.
Betty is one of those people that just the site of her makes me all warm inside. Thanks for becoming a friend and lots of support to you and your family.
Then there's Pat and Fran - actual names. I love you both. Period.
Many people provide me with gems of inspiration and I'd like to talk about them and all that they give me. There are so many of you all around me and I honestly love you all.
I'd like to start with "Betty"
Within 5 minutes of talking we are knee deep into our lives. We are acquaintences and have this special way of filling each other in with all the knitty gritty details in a very short matter of time. She is going through some challenging times right now within her immediate family and she expressed how it is making her feel in a very understandable way; when a family member is in pain, the entire family feels it. The interesting thing is that there is another feeling that she is experiencing - thoughts of frustration and anger towards the person who is suffering. She is uncomfortable with those thoughts but they are there and very real to her.
She told me and acknowledged that it was hard to admit to those feelings and that those emotions are selfish and that she has to put them out of her mind.
I told her how I read a great article on parenting related to special needs - i.e. my life obsession right now - and how all the emotions - all of them, whatever the mix may be - shouldn't be judged but should be felt, acknowledged and that we should in fact swim in them for a moment. It is easier to push forward once we do. You have to get to that dark place and see it staring back at you so that you can live in that moment of that very experience. Take it in, cry, whatever, just acknowledge the shittiness of it and that way it can't really fester moving forward. It is hard to explain. But I guess my point and what I shared much more eloquently to "Betty" was that it is ok and necessary for people to go there. It can get easier quicker once you've done that.
Betty is one of those people that just the site of her makes me all warm inside. Thanks for becoming a friend and lots of support to you and your family.
Then there's Pat and Fran - actual names. I love you both. Period.
Wednesday, June 2, 2010
To Comfort
The comfort of your pillow. Of knowing how good it will feel. Tonight marks the end of a comfort and immense joy in what has been a big part of my life for 5 wonderful years. Leaving the community preschool with Sabrina marks an end to a significant journey in my times. Parenthood in the early years. This has been just that. I embraced the world of preschool and play and community building and it in return embraced me right back.
This time has been perfect. Another reminder of how life takes you to just where you need to be. Look for it and you will see how much you need to be doing this very thing right now. Sometimes it is masked - by drama, by extraneous unneccesities. But look past all of that, and you'll see what it has done for you. I made friendships that will fill me and have filled me so that I am equipped for what comes ahead.
Thank you dear friends and parents. You have lifted me and my girls. Even Layla. She is better off with me having all of you in our lives and is better off with me having this fantastic experience to shape me going forward.
I am leaving Maya and Sabrina's preschool experience. I think we should all be passionate about our lives. We've only got one opportunity - at the very least, there is only one life that we'll remember at a time.
Embrace it embrace it all. You'll be happy that you did. I am happy that I did.
Farewell Dunbar Memorial Parent Participation Preschool. With much love.
jennifer
This time has been perfect. Another reminder of how life takes you to just where you need to be. Look for it and you will see how much you need to be doing this very thing right now. Sometimes it is masked - by drama, by extraneous unneccesities. But look past all of that, and you'll see what it has done for you. I made friendships that will fill me and have filled me so that I am equipped for what comes ahead.
Thank you dear friends and parents. You have lifted me and my girls. Even Layla. She is better off with me having all of you in our lives and is better off with me having this fantastic experience to shape me going forward.
I am leaving Maya and Sabrina's preschool experience. I think we should all be passionate about our lives. We've only got one opportunity - at the very least, there is only one life that we'll remember at a time.
Embrace it embrace it all. You'll be happy that you did. I am happy that I did.
Farewell Dunbar Memorial Parent Participation Preschool. With much love.
jennifer
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