Well, I'm going to Texas today. By myself, unfortunately. The doctor said that even though Lila's feeling better I shouldn't take her. She is still very congested- probably because she's teething- and it wouldn't be a good thing for her to fly. I'm sad that I won't be taking her. I thought about postponing my trip but decided not to after talking to my sister and thinking about missing the memorial service. So I'll go. With hesitation, I might add. I'm nervous about this trip and taking Lila would make things so much easier for me. I know that sounds selfish and it pretty much is. So I'll put myself out there and let you in on what I'm really thinking. The most shallow and superficial reason is that Lila would distract people from noticing that I've gained about 10 pounds since I was there last. (I told you it was shallow.) But mostly I think I'm just nervous because I'm going to be seeing 3 people whose lives have drastically changed since the last time I saw them. My sister doesn't have breasts anymore and will soon be starting chemo. My former boss doesn't have a husband anymore and she's all alone. A very dear friend of mine has a husband who was also diagnosed with cancer and is currently being treated at 2 different hospitals as his cancer is very aggressive and advanced. And I don't know what to say to any of them. I know that I don't have to say anything but I wish that I could just think of something. Having Lila there would bring so much joy but for some reason she's just not supposed to go. And for some reason I need to do this by myself. And for some reason blogging about it just makes me feel better.
Please say a prayer for my sister Brenda, my former boss Shelley and my friend Sheila's husband Bruce.
Hopefully I'll be posting some pics of my beautiful nieces and nephews while I'm in Texas.
Bye!
Linda
A friend sent this to me and I liked it so I'm sharing it.
MY WISH FOR YOU...
- Where there is pain, I wish you peace, mercy & healing.
-Where there is self-doubting, I wish you a renewed confidence in your ability to work through it.
-Where there is tiredness or exhaustion, I wish you understanding, patience, and renewed strength.
-Where there is fear, I wish you love and courage.
- Where there is pain, I wish you peace, mercy & healing.
-Where there is self-doubting, I wish you a renewed confidence in your ability to work through it.
-Where there is tiredness or exhaustion, I wish you understanding, patience, and renewed strength.
-Where there is fear, I wish you love and courage.
Thank God for what you have, then trust Him for what you need !
I definitely needed this today.... maybe someone else did too~
Linda
One more thing
Thanks to everyone that e-mailed me recipe ideas. I really appreciate it. Thanks also for letting me know that you weren't able to leave comments on my blog. My friend Rebecca told me how to fix it- I guess there was a problem with the Google Reader Word Verification so I disabled it.
I am getting ready to go to Texas- still have no idea whether or not I'll be bringing Lila- I have all of her clothes ready just in case. I'm very excited and nervous at the same time- it will surely be an emotional trip but I'm looking forward to it.
Linda
I am getting ready to go to Texas- still have no idea whether or not I'll be bringing Lila- I have all of her clothes ready just in case. I'm very excited and nervous at the same time- it will surely be an emotional trip but I'm looking forward to it.
Linda
Well...............................................................
Today hasn't been the absolute worst day but it's not been a great one. Lila's really congested- and about to chew her fingers off- I wish those two teeth would break through already! Here's a little taste of our day so far:
Lila crawled out of her room (which she never does- she'd rather shut herself in) while I was taking a potty break in the next room- crawled right past the bathroom door and I guess forgot the stairs were there? Fell down the first flight of stairs and didn't make a sound. I'm trying to pull my pants up-forgot to wipe- pleasant- and by the time I get to her she figures out she's mad at ME! I guess I pushed her down those stairs. I'm telling her that I'm sorry, trying to pick her up while she's pushing me away telling me "No! No!"
We're about to walk out the door for physical therapy when- of course- she poops. I'm changing her diaper when I realize that she has poop all over her clothes. Change her clothes, get her in the car, drive to therapy. Can't find a parking spot. Knock my full glass of iced tea over with my purse. Lila doesn't want to get out of her car seat. She tries to bite me. An elderly man in the elevator can't remember what floor he's going to so he pushes all of the buttons hoping that he'll recognize the right floor when he sees it. He doesn't. We get out on the 5th floor and wish him luck. Sign in at the therapy center- only 3 minutes late. Good. Wait for about 15 minutes- the longest we've ever waited- so I ask if everything's okay. The response- oh, yes, Mrs. Nargi, you're early today! SERIOUSLY? I get out my calendar and we discover that they forgot to call me to tell me that the appointment had been pushed back 1/2 hour. Great. After therapy we went to Walgreens pharmacy to get more teething tablets. I sat Lila on the counter while I got my wallet out- she proceeded to throw her head back and hit it on the stand of the computer/cash register keyboard. Mom of the year award for me. On the way home from Walgreens Lila decides that she DOES want to get out of her car seat. Unfortunately the car is moving. I don't know how she got her arms under those straps but she did. I pull over to fix the straps. 2 ambulances and a fire truck are trying to come through. People are trying to pull over to let them pass but I'm in the way. Finally make it home, read stories, put Lila in bed. Hope to get some peace and quiet.
I just knocked my full glass of water over on the coffee table. So much for the newspaper.
Linda
Lila crawled out of her room (which she never does- she'd rather shut herself in) while I was taking a potty break in the next room- crawled right past the bathroom door and I guess forgot the stairs were there? Fell down the first flight of stairs and didn't make a sound. I'm trying to pull my pants up-forgot to wipe- pleasant- and by the time I get to her she figures out she's mad at ME! I guess I pushed her down those stairs. I'm telling her that I'm sorry, trying to pick her up while she's pushing me away telling me "No! No!"
We're about to walk out the door for physical therapy when- of course- she poops. I'm changing her diaper when I realize that she has poop all over her clothes. Change her clothes, get her in the car, drive to therapy. Can't find a parking spot. Knock my full glass of iced tea over with my purse. Lila doesn't want to get out of her car seat. She tries to bite me. An elderly man in the elevator can't remember what floor he's going to so he pushes all of the buttons hoping that he'll recognize the right floor when he sees it. He doesn't. We get out on the 5th floor and wish him luck. Sign in at the therapy center- only 3 minutes late. Good. Wait for about 15 minutes- the longest we've ever waited- so I ask if everything's okay. The response- oh, yes, Mrs. Nargi, you're early today! SERIOUSLY? I get out my calendar and we discover that they forgot to call me to tell me that the appointment had been pushed back 1/2 hour. Great. After therapy we went to Walgreens pharmacy to get more teething tablets. I sat Lila on the counter while I got my wallet out- she proceeded to throw her head back and hit it on the stand of the computer/cash register keyboard. Mom of the year award for me. On the way home from Walgreens Lila decides that she DOES want to get out of her car seat. Unfortunately the car is moving. I don't know how she got her arms under those straps but she did. I pull over to fix the straps. 2 ambulances and a fire truck are trying to come through. People are trying to pull over to let them pass but I'm in the way. Finally make it home, read stories, put Lila in bed. Hope to get some peace and quiet.
I just knocked my full glass of water over on the coffee table. So much for the newspaper.
Linda
Nothing to do with DS, but this lady is My HERO!
The Inspiration Cafe was started by a Chicago beat cop, Lisa Nigro, with a passion for recognizing the sovereignty and dignity of people, even those society has cast out. It started with her carting around a little red wagon to carry around sandwiches and bagels to the homeless in Chicago. From there she set up the Inspiration Cafe.
The Inspiration Cafe was a restaurant for the homeless. Lisa recognized the fact that not only did the homeless deserve a hot meal, but that they deserved to eat it with the same amount of dignity that the rest of us do. This was not a soup kitchen, but rather a working restaurant. Volunteers plan the menu for a given meal, prep it, cook it, serve it, and clean up afterwards. There were usually even a couple of choices, so you would take their order like any server would, and they would have options, like any restaurant patron would. She also offered NA and AA meetings, social services and counseling, job placement, and worked to get people back on their feet, clean, self sufficient, and in a home of their very own. Such an amazing concept. And she rocked it!
She now has three cafes, 75 employees, and 800 volunteers. Lisa truly is an inspirational person. She has even given jobs to many folks who were once patrons themselves. She is the embodiment of compassion and ingenuity.
Before I had the pleasure of being Lila's mother, I was involved in many volunteer opportunities. Now that she is older, combined with the support of my family, I am able to pursue one of my passions and volunteer again. Last Monday I was initiated into the Junior Women's Club of Loudoun. My volunteer opportunities for this month are Meals on Wheels, VSA (Very Special Arts) and Prom Wishes- providing prom dresses, shoes, purses, jewelry and other prom-related items for young ladies that otherwise might not have prom attire. The mission statement for this organization is:
"I pledge my loyalty to Junior Women's Club by doing better than before the work that I have to do; by being prompt,honest, courteous, by living each day, trying to accomplish something, not merely to exist."
I am so excited to be volunteering again. Volunteerism...... pass it on.
P.S. Thanks to my friend Pam for introducing me to the Junior Women's Club of Loudoun. I probably wouldn't have found it on my own.
Linda
The Inspiration Cafe was a restaurant for the homeless. Lisa recognized the fact that not only did the homeless deserve a hot meal, but that they deserved to eat it with the same amount of dignity that the rest of us do. This was not a soup kitchen, but rather a working restaurant. Volunteers plan the menu for a given meal, prep it, cook it, serve it, and clean up afterwards. There were usually even a couple of choices, so you would take their order like any server would, and they would have options, like any restaurant patron would. She also offered NA and AA meetings, social services and counseling, job placement, and worked to get people back on their feet, clean, self sufficient, and in a home of their very own. Such an amazing concept. And she rocked it!
She now has three cafes, 75 employees, and 800 volunteers. Lisa truly is an inspirational person. She has even given jobs to many folks who were once patrons themselves. She is the embodiment of compassion and ingenuity.
Before I had the pleasure of being Lila's mother, I was involved in many volunteer opportunities. Now that she is older, combined with the support of my family, I am able to pursue one of my passions and volunteer again. Last Monday I was initiated into the Junior Women's Club of Loudoun. My volunteer opportunities for this month are Meals on Wheels, VSA (Very Special Arts) and Prom Wishes- providing prom dresses, shoes, purses, jewelry and other prom-related items for young ladies that otherwise might not have prom attire. The mission statement for this organization is:
"I pledge my loyalty to Junior Women's Club by doing better than before the work that I have to do; by being prompt,honest, courteous, by living each day, trying to accomplish something, not merely to exist."
I am so excited to be volunteering again. Volunteerism...... pass it on.
P.S. Thanks to my friend Pam for introducing me to the Junior Women's Club of Loudoun. I probably wouldn't have found it on my own.
Linda
I guess we didn't get that lucky.....
Last night Lila was very sick. It seemed like she had been feeling better so we sent her to school yesterday. When I went to pick her up the teacher said that she seemed really tired but had been a trooper all morning. She wasn't interested in eating lunch so I put her down for a nap. After a very long period of time she finally went to sleep. When she woke up she was miserable. She didn't want to do anything. I sat and held her for over an hour and she kept falling back to sleep. She didn't want to eat, didn't want to play. She just whined and sometimes cried. It is so out of character for her. I tried to get her to eat and she just slapped my hands and yelled "NO!" I didn't know what to do. I couldn't tell if it was behavioral- she didn't have a fever or anything. I finally gave her some Tylenol to see if things would get better. Within 20 minutes she was a different kid- back to herself- eating, smiling, jabbering. I felt horrible. I had let it go on for a really long time before I gave her any relief. During the night she kept coughing and crying out. This morning she kept coughing and was just miserable. Nick held her on the couch and she went back to sleep for a couple of hours. We decided that we'd better fill the prescription that the doctor gave us just in case she didn't get better. I'd bet anything that she has another ear infection. I am going to take her to the doctor on Wednesday or Thursday and get her checked out. Of course- if she isn't drastically improved by Monday we will go first thing in the morning.
I guess this means that I probably won't be able to take her to Texas with me. I really want her to go. She brings so much joy wherever she goes and I know it would mean the world to my sister. I leave on Thursday- maybe she'll be okay to fly by then? I won't take her without asking the doctor and making sure she's okay.
Please keep her in your thoughts and prayers. We'd really appreciate it.
Linda
I guess this means that I probably won't be able to take her to Texas with me. I really want her to go. She brings so much joy wherever she goes and I know it would mean the world to my sister. I leave on Thursday- maybe she'll be okay to fly by then? I won't take her without asking the doctor and making sure she's okay.
Please keep her in your thoughts and prayers. We'd really appreciate it.
Linda
I learned something new today......
Some Native American tribes refer to children with Down syndrome as a “window to the Great Spirit” because of their sheer simplicity.
I think I like this.
Linda
I think I like this.
Linda
I love this one.....
I have italicized the ones that hit home the most for me:
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have.Someone I love will need unconditional love and support after I am gone-this frightens me to the core. Someone I love encounters pity,stereotyping responses, and prejudice at every turn,because they look,act,and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life.......
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have.Someone I love will need unconditional love and support after I am gone-this frightens me to the core. Someone I love encounters pity,stereotyping responses, and prejudice at every turn,because they look,act,and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life.......
Going to Texas
I am leaving for Texas on Thursday the 26th. I am so excited to be able to go down and see some of my family that lives there- I will miss my brother Roger but hope to catch him when we go back in April for Lila's spring break. My sister seems to be recovering well from her surgery- she got her test results and they found cancer cells in 3 of the 20 lymph nodes that they tested. She will start chemo in a month. She had 2 of her drain tubes removed yesterday- they left the one attached to her lymph node incision as it was still draining a little darker than it should have been. Thankfully that's already getting better.
I'm also thankful that I will be able to attend the memorial service of the husband of my former boss. It will be so nice to be there to support her and also to see some of my dear friends.
The main purpose of my visit to Texas is to fill my sister's freezer with some food. I'm not sure how long she will be having chemotherapy but I'd like to provide some meals for them during this period of time. If anyone has recipes for meals that freeze well, it would mean a lot if you would forward them to me. You can e-mail me at lindanargi1@yahoo.com. I would really appreciate it.
Thanks for all of your prayers, well wishes and support .
Linda
I'm also thankful that I will be able to attend the memorial service of the husband of my former boss. It will be so nice to be there to support her and also to see some of my dear friends.
The main purpose of my visit to Texas is to fill my sister's freezer with some food. I'm not sure how long she will be having chemotherapy but I'd like to provide some meals for them during this period of time. If anyone has recipes for meals that freeze well, it would mean a lot if you would forward them to me. You can e-mail me at lindanargi1@yahoo.com. I would really appreciate it.
Thanks for all of your prayers, well wishes and support .
Linda
Baby steps
Lila hasn't been feeling that great so I debated with myself on whether or not to take her to her Physical Therapy appt. yesterday. When she woke up her nose was still running but she was happy and had a lot of energy so we decided to go. (Not to mention that if you don't cancel 24 hours before the appt. they charge you $50 which is a bit steep in my opinion.)
OF COURSE I didn't have my camera but here's what happened. Lila took 42 baby steps, walking with her therapist. Her therapist was only holding one of her hands. Usually if you try to get her to walk without holding both of her hands she takes about 3 steps before dropping to her knees. After a very cooperative therapy session, Lila took 81 baby steps walking back to the waiting room with- you guessed it- her therapist only holding one of her hands.
I admit it, I cried. And Carla, her therapist, was thrilled.
Linda
OF COURSE I didn't have my camera but here's what happened. Lila took 42 baby steps, walking with her therapist. Her therapist was only holding one of her hands. Usually if you try to get her to walk without holding both of her hands she takes about 3 steps before dropping to her knees. After a very cooperative therapy session, Lila took 81 baby steps walking back to the waiting room with- you guessed it- her therapist only holding one of her hands.
I admit it, I cried. And Carla, her therapist, was thrilled.
Linda
Good news at the doctor
Our little princess doesn't feel well. She is teething- both of her eye teeth are trying to make their way through. She had a runny nose on Thursday and was a little cranky but wasn't acting sick. We kept her home from school on Friday because of her runny nose but she still didn't seem sick. We hosted a Valentine's Day dinner party on Saturday and right before everyone was scheduled to show up Lila started coughing. A croupy cough. Not good. Apparently easily distracted, our little social butterfly kept everyone entertained all night. Nick and I both noticed that she didn't cough the entire time we had company. (He thinks that she coughs just because it makes me nervous.) On Sunday she coughed off and on during the day and wasn't herself. We took her to the doctor this morning and it turns out she just has a cold. He checked her ears, nose, throat, breathing..... everything checked out okay. This is the very first time that we've taken her to the doctor on a sick visit that she hasn't come home on an antibiotic or Tamiflu. YAY! I know this is a very uneventful post but I'm so excited that she doesn't have an ear infection.
Here are some pictures to make up for the incredibly boring post.
I absolutely love this picture of Lila and her daddy. They clearly adore each other!
Lila & Mommy on Valentine's Day
Sisters!
Me & my first baby!
Linda
Here are some pictures to make up for the incredibly boring post.
I absolutely love this picture of Lila and her daddy. They clearly adore each other!
Lila & Mommy on Valentine's Day
Sisters!
Me & my first baby!
Linda
Pics of Lila... just because it's been a few days!
This picture is for people that knew me before I had Lila. I actually made this cake for Lila's Valentine's Day party at school. Shocking, I know.
Lila's Valentine's Day party at school. Not a good picture but the only one I have!
Circle time!(Apparently this is her Valentine party dress!)
Lila's helping Daddy work in the yard!
Trying on Daddy's gloves
Tif experimenting with the color setting on the camera.
Princess Lila sitting in her room reading
Pretty girl!
Sisters!
"Flying" on the stairs with Daddy
Big girl!Happy Valentine's Day to everyone. Hope you feel loved!
Linda
Linda
Pics- Valentine's Day Dance
Thanks to Annette and Haik we have a few pictures from the Valentine's Dance. The girls had such a good time!
Lila, Roxy and Ashley
The girls- we're missing Olivia!Kelly, Ashley, Annette, Roxy, Linda, Lila and Josie!
Checkin' each other out!
I love this picture of Roxy- it's beautiful!
Enough pics! Lila's not havin' it!
Lila's out of here! See ya girls!
As Annette (or Haik) said, Power to my peeps!I will be posting more pictures in a few minutes. I promise, Donna!
Linda
February 13th
3 years ago today I found out that I was pregnant with Lila. I had been feeling a little funky for about 9 days. I had a hunch that I might be pregnant but wasn't really ready to go there. A little history to lead up to the actual moment:
Tiffani had bought her best friend some pajamas as a gift. They were on the kitchen counter because..... I'm not sure why? But they were there. Justin and his former girlfriend, Maggie, had just come home from school and we were all hanging out. The kids were going to make valentines for Maggie's friend because she was having a hard time and they wanted to cheer her up. (I know this is dragging on and on, but I'm re-living the day so please bear with me.)
Justin and Maggie were grabbing a snack- which included grape juice- and the grape juice somehow ended up on the pajamas. Not good. So I told Tiffani it was okay, that I could get the grape juice out. I said it with a little more confidence than I actually felt. I scurried out to the laundry room to discover that- YIKES-we were out of Biz. Off to the store I went, which was perfect, because Justin had asked me to get flowers for Maggie. I went to the Giant. No Biz. I tried CVS. No Biz. Apparently Biz was a hot commodity at the time. The third store I end up in was Harris Teeter. They had the Biz.....big relief. I took my time picking out just the right flowers for Maggie, and then I found myself in the aisle that I had been avoiding for about 9 days. Which test should I get? I wasn't sure how late I actually was because I've never been on schedule. I finally ended up buying a First Response 2 pack.
When I got home, the kids yelled to me from the family room, asking if I could use some help. I told them no, then went upstairs to hide the flowers. I put them in Justin's room and proceeded to my bathroom. I was shaking. I wanted to know but I didn't want to know. I took the test. POSITIVE! I'm like- no way. Absolutely not. It's a mistake! I'm taking the other one. It's POSITIVE!
I'm totally freaking out. I'm almost 40 years old! I have two grown kids! My baby is a senior in high school! I've already worked with a career counselor- I'm going back to school! I'm starting in 3 months! I have all these plans! This is insane! Please, God, no! This can't be true!
Why?
I went downstairs. All 3 kids are sitting around the coffee table with construction paper, crayons and markers. Remember, these kids are 17, 18 and 20. They probably looked so cute, sitting there making valentines for a friend that was sad. Unfortunately, it was lost on me. I was freaking out. I sat down on the loveseat and said "Remember when you asked me if I needed help? Well, I'm going to need a lot of help from now on. I'm pregnant."
The next few minutes are pretty blurry for me. I don't really remember the reaction of the kids, I don't remember what they said. I just remember, after a few minutes, thinking....
Nick will be so happy. And I knew that I couldn't ruin this moment with any of my selfish thoughts. Justin and I went back to the store and got a stuffed animal and a card for Nick. Tiffani, Justin and I waited for him to come home like little kids. When he drove up we were all standing by the door. He came in, looked at us suspiciously, and asked what was up. I gave him the stuffed animal and the card that said, "Guess what? You're going to be a daddy!" He read it, looked at me, looked back at the card and then said, "Are you serious? Really?" He was so excited. We called his parents and then we called mine. Everyone was so happy. Except me. I tried, but I just wasn't. I was happy for Nick, but not for myself.
And I guess this is where I really bear my soul. You'll probably think I'm horrible but I didn't want a baby. A baby was actually the worst possible thing that I could imagine right then. I had already raised two kids- mostly by myself. Love my kids? ABSOLUTELY! The very best part of life. But I felt as if I had done my time, paid my dues. It was "me time". I was angry.
Thankfully this is just the beginning of the story. I'm almost ready to post the story of my pregnancy- all the ups and downs. Mostly downs. And that's not a pun. There were so many complications, so many issues. The doctors warned us a couple of times to prepare for the worst, that the baby probably wouldn't survive the pregnancy. By the end of my pregnancy I was having conversations with Lila, the precious baby inside of me- begging her to live, willing her to survive. Thankfully, God changed my heart.
Linda
Tiffani had bought her best friend some pajamas as a gift. They were on the kitchen counter because..... I'm not sure why? But they were there. Justin and his former girlfriend, Maggie, had just come home from school and we were all hanging out. The kids were going to make valentines for Maggie's friend because she was having a hard time and they wanted to cheer her up. (I know this is dragging on and on, but I'm re-living the day so please bear with me.)
Justin and Maggie were grabbing a snack- which included grape juice- and the grape juice somehow ended up on the pajamas. Not good. So I told Tiffani it was okay, that I could get the grape juice out. I said it with a little more confidence than I actually felt. I scurried out to the laundry room to discover that- YIKES-we were out of Biz. Off to the store I went, which was perfect, because Justin had asked me to get flowers for Maggie. I went to the Giant. No Biz. I tried CVS. No Biz. Apparently Biz was a hot commodity at the time. The third store I end up in was Harris Teeter. They had the Biz.....big relief. I took my time picking out just the right flowers for Maggie, and then I found myself in the aisle that I had been avoiding for about 9 days. Which test should I get? I wasn't sure how late I actually was because I've never been on schedule. I finally ended up buying a First Response 2 pack.
When I got home, the kids yelled to me from the family room, asking if I could use some help. I told them no, then went upstairs to hide the flowers. I put them in Justin's room and proceeded to my bathroom. I was shaking. I wanted to know but I didn't want to know. I took the test. POSITIVE! I'm like- no way. Absolutely not. It's a mistake! I'm taking the other one. It's POSITIVE!
I'm totally freaking out. I'm almost 40 years old! I have two grown kids! My baby is a senior in high school! I've already worked with a career counselor- I'm going back to school! I'm starting in 3 months! I have all these plans! This is insane! Please, God, no! This can't be true!
Why?
I went downstairs. All 3 kids are sitting around the coffee table with construction paper, crayons and markers. Remember, these kids are 17, 18 and 20. They probably looked so cute, sitting there making valentines for a friend that was sad. Unfortunately, it was lost on me. I was freaking out. I sat down on the loveseat and said "Remember when you asked me if I needed help? Well, I'm going to need a lot of help from now on. I'm pregnant."
The next few minutes are pretty blurry for me. I don't really remember the reaction of the kids, I don't remember what they said. I just remember, after a few minutes, thinking....
Nick will be so happy. And I knew that I couldn't ruin this moment with any of my selfish thoughts. Justin and I went back to the store and got a stuffed animal and a card for Nick. Tiffani, Justin and I waited for him to come home like little kids. When he drove up we were all standing by the door. He came in, looked at us suspiciously, and asked what was up. I gave him the stuffed animal and the card that said, "Guess what? You're going to be a daddy!" He read it, looked at me, looked back at the card and then said, "Are you serious? Really?" He was so excited. We called his parents and then we called mine. Everyone was so happy. Except me. I tried, but I just wasn't. I was happy for Nick, but not for myself.
And I guess this is where I really bear my soul. You'll probably think I'm horrible but I didn't want a baby. A baby was actually the worst possible thing that I could imagine right then. I had already raised two kids- mostly by myself. Love my kids? ABSOLUTELY! The very best part of life. But I felt as if I had done my time, paid my dues. It was "me time". I was angry.
Thankfully this is just the beginning of the story. I'm almost ready to post the story of my pregnancy- all the ups and downs. Mostly downs. And that's not a pun. There were so many complications, so many issues. The doctors warned us a couple of times to prepare for the worst, that the baby probably wouldn't survive the pregnancy. By the end of my pregnancy I was having conversations with Lila, the precious baby inside of me- begging her to live, willing her to survive. Thankfully, God changed my heart.
Linda
Passed on, with permission
While we were eating...
... they were hungry
While we were playing...
... they were restrained
While we were tucking our kids into bed...
... they were alone
While we turned up the heat...
... they laid in the icy cold
While we wrapped our children in blanket sleepers...
... they laid in their own excrement
While we sang songs and listened to music...
... they listened to the screams and cries of those around them
While we rocked our babies...
... they silently rocked themselves
While we hugged our kids...
... they scratched at their own faces and pulled their own hair for stimulation
While we cried over scraped knees...
... they moaned in their loneliness
While we brushed our daughters' beautiful hair...
... they had their heads shaven to stave off the lice
While we fought off the flu with love and nourishment...
... they got the flu and went Home.
No longer suffering... but so many more still are.
In memory of those that have never felt the love of a family, but have passed away alone. Today we learned of the passing of these two girls in Eastern Europe.
Margarita
Katarina
I'm supposed to be in the car on my way to get Lila's thickener but here I sit, crying. I struggled with wondering whether or not I should pass this along. It's so incredibly sad. I don't want to make people sad, right? Wrong. We get so caught up in our lives, our problems, our kids, our families, our errands, our friends, us, us, us. Me, me, me.
May we never forget how blessed we are. May we hug our precious children tighter today and say a prayer for those children that go without hugs. May we have a new awareness and appreciation for the people that make huge sacrifices to welcome one of these beautiful children into their families.Linda
I know it's wordless Wednesday, but.....
I'm relatively new to blogging, and I cruise all over checking out different blogs. Wow- we are all so different. Most of the blogs that I read are usually written by the parent(s) of a child with Down Syndrome. Sometimes I am surprised by the comments that are posted. Most comments are supportive, but some aren't. It's obvious that we're not going to all agree on everything but unless someone is asking for advice , why do people feel compelled to give advice? To take it a step further, why do people feel the need for passing judgement and being rude when making comments? It's really quite disturbing.
Everyone I know that has a child with DS does a lot of research. When decisions need to be made that affect our kids, those decisions are not taken lightly. Much time and consideration is put into the decision-making process. Some of us decide to vaccinate on schedule, some follow an alternative schedule, some don't vaccinate at all. Some decide to keep their babies home until the age of 3, some send their kids to school when they're 2. Some decide to home-school. Some people think it's okay to have their child labeled as Mentally Retarded. Some would fight that label with everything they have in them. Some choose to pursue private therapies, some stick with whatever therapies are offered by the county or the school. Some people go through the drive-through at McDonalds, some are appalled at the thought of it. I still think one similarity remains. We all do what we think is right for our family. We're all trying to do the best that we can.
I'm so thankful for my "support group" of family and friends. We all look at things differently, which I love because it makes things interesting. The majority of my family home schools. I never have, nor do I intend to. When I say things about home schooling out of ignorance, I am gently informed of my ignorance! On the flip side of that, I can help my family understand why people that have children with disabilities get so worked up when the word retard is thrown around. My friends that chose not to have prenatal testing can tell me about their reasons for not wanting to have the testing done. In turn I let them know that we chose prenatal testing not because there was a choice to be made, but because we wanted to know exactly what we were facing, in order to prepare ourselves in every way possible. We grow together, we learn from each other. I love it. I realize that everyone doesn't have the support that we have and I don't ever want to take it for granted. And while I know that some won't agree, this is what I believe.
I believe that God doesn't make mistakes. Therefore, I know that when Lila was blessed with an extra chromosome, it wasn't by accident. I believe that God chose Lila for our family and I think that's awesome. I also believe that He hand-picked the friends that we have and for that I feel incredibly blessed.
Linda
Everyone I know that has a child with DS does a lot of research. When decisions need to be made that affect our kids, those decisions are not taken lightly. Much time and consideration is put into the decision-making process. Some of us decide to vaccinate on schedule, some follow an alternative schedule, some don't vaccinate at all. Some decide to keep their babies home until the age of 3, some send their kids to school when they're 2. Some decide to home-school. Some people think it's okay to have their child labeled as Mentally Retarded. Some would fight that label with everything they have in them. Some choose to pursue private therapies, some stick with whatever therapies are offered by the county or the school. Some people go through the drive-through at McDonalds, some are appalled at the thought of it. I still think one similarity remains. We all do what we think is right for our family. We're all trying to do the best that we can.
I'm so thankful for my "support group" of family and friends. We all look at things differently, which I love because it makes things interesting. The majority of my family home schools. I never have, nor do I intend to. When I say things about home schooling out of ignorance, I am gently informed of my ignorance! On the flip side of that, I can help my family understand why people that have children with disabilities get so worked up when the word retard is thrown around. My friends that chose not to have prenatal testing can tell me about their reasons for not wanting to have the testing done. In turn I let them know that we chose prenatal testing not because there was a choice to be made, but because we wanted to know exactly what we were facing, in order to prepare ourselves in every way possible. We grow together, we learn from each other. I love it. I realize that everyone doesn't have the support that we have and I don't ever want to take it for granted. And while I know that some won't agree, this is what I believe.
I believe that God doesn't make mistakes. Therefore, I know that when Lila was blessed with an extra chromosome, it wasn't by accident. I believe that God chose Lila for our family and I think that's awesome. I also believe that He hand-picked the friends that we have and for that I feel incredibly blessed.
Linda
Excited!
A few weeks ago I sent an e-mail to Lila's preschool teacher asking for an IEP review to request an increase in classroom service hours from 3 days per week to 4 days per week. I was a bit nervous about asking for this as Lila is only 2 years old and the "norm" in our county for 2 year olds to attend Early Childhood Special Education preschool is 2 or 3 days a week. I asked the teacher for her opinion before I made an official request. Here was her initial response:
"And as far as increasing service hours, that is of course an IEP team decision (which includes you, me, all of the related service providers, and Principal Berkey - who is the SpEd contact while AP Brandy Crowley is out on maternity leave). Lila is right now the only two year old in my class who currently comes three days per week, the rest all come two days per week. My first thought is that we need to consider her young age and want to make sure that we don't push her too much. As you mentioned, she is making progress.....in fact LOTS of progress. We would need to weigh all of the factors. In addition, we need to get the related service providers input as to increasing the therapy. I have to admit though, Lila is a trooper. In most cases I would highly discourage a two year old to come more than 2-3 days per week, but Lila is different. She is such a curious child and is up for almost anything or any task that I give her. That is definitely something to consider.....
Let's enjoy the nice long weekend and talk about it next week, okay?"
So, I thought that I was basically getting blown off. There seemed to be a little hope at the end of the first paragraph, but..... I had my doubts. I set out to prepare for a fight. I asked my friends for typically developing milestone charts. I asked our private therapists for their input. I compiled all of the data. I wrote it down. I composed my little speech and practiced it. I was ready.
Today after the class Valentine's Day party, Lila's teacher handed me a Notice of IEP Review or Revision meeting. The meeting was scheduled for today, between 2:00 and 2:30 and the location was................... Sent in backpack. The notice confirming the requested changes had already been signed by Lila's teacher and the principal (acting because the VP is out on maternity leave). The only signature missing was mine. Signed, sealed and delivered baby. Without a fight. Thank you God.
"And as far as increasing service hours, that is of course an IEP team decision (which includes you, me, all of the related service providers, and Principal Berkey - who is the SpEd contact while AP Brandy Crowley is out on maternity leave). Lila is right now the only two year old in my class who currently comes three days per week, the rest all come two days per week. My first thought is that we need to consider her young age and want to make sure that we don't push her too much. As you mentioned, she is making progress.....in fact LOTS of progress. We would need to weigh all of the factors. In addition, we need to get the related service providers input as to increasing the therapy. I have to admit though, Lila is a trooper. In most cases I would highly discourage a two year old to come more than 2-3 days per week, but Lila is different. She is such a curious child and is up for almost anything or any task that I give her. That is definitely something to consider.....
Let's enjoy the nice long weekend and talk about it next week, okay?"
So, I thought that I was basically getting blown off. There seemed to be a little hope at the end of the first paragraph, but..... I had my doubts. I set out to prepare for a fight. I asked my friends for typically developing milestone charts. I asked our private therapists for their input. I compiled all of the data. I wrote it down. I composed my little speech and practiced it. I was ready.
Today after the class Valentine's Day party, Lila's teacher handed me a Notice of IEP Review or Revision meeting. The meeting was scheduled for today, between 2:00 and 2:30 and the location was................... Sent in backpack. The notice confirming the requested changes had already been signed by Lila's teacher and the principal (acting because the VP is out on maternity leave). The only signature missing was mine. Signed, sealed and delivered baby. Without a fight. Thank you God.
Pics of Lila and friends......
Hanging out after sign language class- how cute are these kids?
Apparently my daughter is a bubble worshipper.
Cody's getting in on the action
Miss Pam and Eliza
Miss Annette and Roxy shakin' it!
Featuring Cody on the drums.....
Annette and Roxy get two pics- both too cute and I couldn't pick one!
Lila and her mama
Playdate at Miss Kelly's house with Ashley and Olivia, Roxy, Josie & Lila
Lila and Ashley
Olivia and Roxy
Ashley and Josie
This is what happens when you're not paying attention... Facebook maybe?!?
Silly girl!
If they're not gonna feed me I'll just get it myself....
Reading... just because.... I love when she sits like this!So much for pictures and other news
We went to the DSANV Valentine's Dance tonight and had a really nice time. It was good to see our friends and meet some new ones. Lila was dancing around on her knees all night- I'm sure people thought that we were crazy to let her do that as she was getting pretty dirty BUT she doesn't want to be held all the time and she can't walk so..................................... the options are limited. I was following her around taking pictures of her when I realized that the memory chip was not in the camera. Imagine my disappointment. She was so happy, bouncing on her knees, singing, smiling, you get the picture. A couple of our friends took pictures so as soon as I get them, I will post them. All in all, it was a good night.
I will be posting pictures from last week's playdate and sign language class tomorrow.
An update on my sister Brenda- I spoke with my mom today and Brenda is having a pretty difficult time. Her emotions are up and down- which isn't surprising. She had a hysterectomy which threw her into menopause (always a pleasant experience I'm sure) and she can't take hormones- the type of cancer that she has feeds on estrogen. So that option is out. She went into the surgery expecting one outcome and when she woke up she found out that everything had changed. They installed a port in her chest for her to receive chemotherapy. She has three drainage tubes which will come out in about 10 days (I think that's what my mom said). One tube in each of her breasts and another where the lymph node incision is. She will meet with an oncologist next week to discuss what the future holds. I'm not sure how much recovery time she will have before they start chemotherapy. Please keep her in your thoughts and prayers- things will get better but it's definitely not an easy road. I wish I could be there to help take care of her- did I mention that I hate being so far away?
A couple of other things going on :
My husband's 80 year old aunt and Godmother fell last Thursday and broke her neck. She is currently under evaluation to determine whether or not she will be able to withstand the corrective surgery. She has osteoporosis so they will have to do bone density testing. She also has high blood pressure; that is also a concern. Tonight she is under the care of the cardiac unit at a hospital in NY to ensure that her heart is strong. It's a hard time for their family so please keep them in your thoughts and prayers.
Last, but certainly not least, the husband of my former boss passed away last weekend. He was only in his sixties but had a lot of health issues. He died in his sleep and I can't think of a better way to go but I know that her heart must hurt in a way that I cannot comprehend. They were always so good to me- they treated me like I was one of their own. I was a single parent when I worked for her and they looked out for our little family in so many ways. I know how much she must miss him and I wish that there was something that I could do to ease her pain.
This post started out pretty nicely and went then went downhill. Such is life. Hopefully it reminds us to hug the people that we love and live each day to the fullest. There are no guarantees so we have to make every day count.
Linda
I will be posting pictures from last week's playdate and sign language class tomorrow.
An update on my sister Brenda- I spoke with my mom today and Brenda is having a pretty difficult time. Her emotions are up and down- which isn't surprising. She had a hysterectomy which threw her into menopause (always a pleasant experience I'm sure) and she can't take hormones- the type of cancer that she has feeds on estrogen. So that option is out. She went into the surgery expecting one outcome and when she woke up she found out that everything had changed. They installed a port in her chest for her to receive chemotherapy. She has three drainage tubes which will come out in about 10 days (I think that's what my mom said). One tube in each of her breasts and another where the lymph node incision is. She will meet with an oncologist next week to discuss what the future holds. I'm not sure how much recovery time she will have before they start chemotherapy. Please keep her in your thoughts and prayers- things will get better but it's definitely not an easy road. I wish I could be there to help take care of her- did I mention that I hate being so far away?
A couple of other things going on :
My husband's 80 year old aunt and Godmother fell last Thursday and broke her neck. She is currently under evaluation to determine whether or not she will be able to withstand the corrective surgery. She has osteoporosis so they will have to do bone density testing. She also has high blood pressure; that is also a concern. Tonight she is under the care of the cardiac unit at a hospital in NY to ensure that her heart is strong. It's a hard time for their family so please keep them in your thoughts and prayers.
Last, but certainly not least, the husband of my former boss passed away last weekend. He was only in his sixties but had a lot of health issues. He died in his sleep and I can't think of a better way to go but I know that her heart must hurt in a way that I cannot comprehend. They were always so good to me- they treated me like I was one of their own. I was a single parent when I worked for her and they looked out for our little family in so many ways. I know how much she must miss him and I wish that there was something that I could do to ease her pain.
This post started out pretty nicely and went then went downhill. Such is life. Hopefully it reminds us to hug the people that we love and live each day to the fullest. There are no guarantees so we have to make every day count.
Linda
A little reminder
As I was carrying my beautiful daughter up the stairs today, I was thinking about how badly I want her to walk. She is heavy! (We have a morning ritual of brushing our teeth together before school, and we're usually running a little late, so I carry her instead of letting her crawl.)
On the way to school we sing songs, say the alphabet, count to 10, say the name of all the kids in her class, etc. Ritual. Routine. Things I take for granted. On the way home I started thinking about the fact that I go through life, day in and day out, not being thankful enough. For Lila's ability to crawl. For her ability to learn. For the fact that, even though we have to thicken all of her liquids, she can drink. She can eat. She's growing. She's relatively healthy. She's learning new things every day.
Thank you, God, for the miracle of our beautiful daughter. I am so thankful.
Linda
P.S. I'm also thankful for my husband, the relationship that I have with my two big kids, my supportive family and fabulous friends.
On the way to school we sing songs, say the alphabet, count to 10, say the name of all the kids in her class, etc. Ritual. Routine. Things I take for granted. On the way home I started thinking about the fact that I go through life, day in and day out, not being thankful enough. For Lila's ability to crawl. For her ability to learn. For the fact that, even though we have to thicken all of her liquids, she can drink. She can eat. She's growing. She's relatively healthy. She's learning new things every day.
Thank you, God, for the miracle of our beautiful daughter. I am so thankful.
Linda
P.S. I'm also thankful for my husband, the relationship that I have with my two big kids, my supportive family and fabulous friends.
Update on my sister
Thanks to everyone who has been sending their prayers, positive thoughts and well wishes. Brenda's surgery lasted about 5 hours which is pretty typical I guess. My mom called from the hospital when it was over and told me that the cancer had spread to the lymph nodes. To what extent, we won't know until next week sometime. This isn't horrible news, and I get that, but it's totally unexpected. The doctors told Brenda that the lump was so small that it was hard to believe she even found it. They said that they were certain she wouldn't even have to go through chemo. So when I answered the phone today I expected my mom to tell me that the surgery was over. And that's basically it. But I could immediately tell by the sound of her voice that it wasn't that simple. The good news is that she DID catch it early. And even though she will have to go through chemo, she's going to be fine.
When I talked to my mom Brenda was still in recovery and she hadn't been told yet. This won't go over well with her as she watched her 3 year old son go through chemo for a year. At the same time, he's a cancer survivor. Brenda will be too.
Linda
When I talked to my mom Brenda was still in recovery and she hadn't been told yet. This won't go over well with her as she watched her 3 year old son go through chemo for a year. At the same time, he's a cancer survivor. Brenda will be too.
Linda
Please pray
Hey guys- please pray for my sister Brenda. She has breast cancer at the age of 34. She is having a double mastectomy and hysterectomy tomorrow morning at 7 a.m. Texas time! Please pray that the surgery will go well and that she will have a quick recovery.
Thanks a lot-
Linda
Thanks a lot-
Linda
Subscribe to:
Posts (Atom)