Monday, January 21, 2013

Dear Ezra - January 2013

Dear Ezra,

You are now 3 months old, yet, I can't remember a time when you weren't a part of our family.  You are amazing.  Daddy and I marvel daily at the progress of your development.  We watch you do things we've never realized babies can do, and we rejoice with you when you learn something new.

Recently you've decided that you don't need to be swaddled at night, but that you can fall asleep on your own.  You're such a big boy. 

And you use your hands more and more now.  You hold on when you're being carried, and you grab the toys hanging down when you're laying on your toy mat.  And now you've started pulling on my clothes when you want to nurse.  You are so smart.

We love to hear your voice.  I can tell you're practicing to be a singer when you grow up.  You squeal and talk baby talk and blow raspberries all day long.  Someday I'll probably be annoyed that you won't be quiet, but not yet.

Sometimes we play this game where I bounce you and shake you on my lap and you giggle and laugh with a big open mouth like it's the greatest thing you've ever experienced.  Daddy tries to do it on his lap, but it's just not the same.  You don't giggle for him (I think he's a little jealous).  You are Mama's boy and don't you ever let anyone tell you that's a bad thing, or make fun of you for it.

You will forever be my boy.  I love you so much.

Love, Mama

Saturday, January 19, 2013

Sadie's third birthday

Dear Sadie,

Today you turn 3. Today is a big deal, because, not only is it the anniversary of your birth, but it is the anniversary of the day I became a mom. You are my first born child and you will always have a special place in my heart that is different than your siblings. I loved you before I knew you. I wanted to keep you when they told me I was going to lose you. And I am a stronger person for who you have demanded that I become.

You will always need me, more than most children need their mommies. And I will forever take care of you, speak for you, feed you and dress you, and fight for you. Before I had you I didn't know how to fight for something the way I do now. Because of you I have big, bulging mommy muscles. Because of you I have amazing friends. Because of you I have an appreciation for life and beauty like never before. Because of you I realize which things are silly to stress over or be sad about. Because of you, I am mom.

Sadie, today you're 3! You are growing up and learning more and more each day. You have ideas and opinions in that head of yours, and anybody who knows you knows how sassy and demanding you can be. You have turned into such a happy little girl. Even your teachers at school tell me all the time how happy you are. There was a time when I thought you'd never stop screaming, but now you never stop smiling.

You go to school now and your teachers are so proud of you and so impressed with everything you're learning. You play with the other kids in your class and even share toys with them. You are learning to communicate what you want, and you are learning to sit and use your hands to touch something or play with something. You are an amazing little person who is learning to overcome so much just to do basic things.

You are beautiful, and I am proud to be your mother. You are so loved, and that will never change.

Happy Birthday!


Thursday, January 17, 2013

My original due date

Dear Sadie,

On this day, 3 years ago, I was supposed to have my  And I was frustrated because you hadn't come yet.  I went to get my toenails done, hoping that would make me feel better, and maybe start labor.  ANd there was another lady there getting her toenails done, and she had a tiny baby.  She asked me when I was due and I told her, "today."  Then we talked about having a baby and how great it is...and that just made me more eager and anxious to meet you.  I was jealous that she had her baby and mine was still in my tummy.  It wasn't until 2 days later that you finally came out.

And I am going to tell you this story every year on January 17th for the rest of your life.


Wednesday, January 16, 2013

Sadie's Progress Update

Sadie's teacher sent home a paper in Sadie's folder yesterday.  It's titled, Sadie's Progress Update.  It says that most kids get a formal progress report on their IEP goals this time of year, but since Sadie just started school right after Thanksgiving, she doesn't get one yet.  But, she wanted to make sure I got something because Sadie's been working so hard and she wants to acknowledge it.

The progress update states that Sadie is adjusting to school very well.  She participates in activities and everyday is showing the teachers more and more of what she can do.  The teacher said it is obvious that Sadie LOVES school (she even put it in all caps like that in this note).  She comes happy and leaves happy and they can tell that she is pleased with this new daily routine of going to school.

Then she lists some of the things Sadie has been working on.  Things like engaging in play in different positions, using all her skills to communicate, and staying engaged in circle time.  Sadie is working on making choices, and responding appropriately when it is her turn, and participating positively.

Sadie's teacher says she is pleased to see Sadie doing so well so quickly and she predicts that she will continue making progress throughout the year.

And at the end, she says she adores having her in her classroom and that she is loved by all.

God bless these people who work with my child daily, as well as those other children in her class.

Monday, January 14, 2013

Special Siblings

There's this video floating around Facebook, maybe you've seen it.  It's about these 2 brothers winning the Sports Kids of the Year award.  One boy is 9, and he does triathlons while towing his younger brother who has CP.  This isn't a new concept, racing while towing someone disabled, but this is the first time I've seen it be siblings...siblings under 10 years old.

And in the interview the older brother just talks about how much his brother loves to ride in the cart while they race.  He says, "if people raced more with people who can't walk or talk or have autism, it might open the eyes of those who don't really care about it."  It's all about him and his brother, it's never just him.  He says, "we can always do anything."

This video got me thinking about siblings.  Well, I think about siblings a lot, but it inspired me to write something about siblings.  It's special to have a brother or a sister, especially one who is disabled.  I think the kids who have disabled siblings are wired differently.  They are brought up to care more, to see things differently, to be more patient, and to want to help change the world.  They want to make the world a better place for their disabled brother or sister.

I will never forget this summer when I parked and was getting Sadie out of the car.  We were going to go have PT in the pool.  And there was a man who was some kind of city worker or a cable guy or something parked next to us.  He must have just been enjoying his lunch break in his van somewhere in the shade.  He watched me haul Sadie out of my little Volkswagen, and he rolled down the window to tell me that I was doing a great job.  He told me he had a sister like Sadie when he was younger.  She had passed away when she was 17.  Then he got this twinkle in his eye when he told me that he just remembers how much his mom loved her and was so good to her.  He was probably in his 40s, but he had fond memories of his sister and the love in his home when he was younger.

I think about this guy a lot.  I try to imagine what Ezra will be like when he's an adult.  Will he someday see a mom getting her disabled child out of the car?  Will he see a child in a wheelchair at a restaurant?  Will he open the door for a mom who is struggling to push her grocery cart and push her child in a wheelchair?  And will he speak fondly of growing up with his sister?  Will he connect with that mom by telling her about his mom?  I really want Ezra to grow up compassionate and patient and accepting of people of all abilities.

I have a friend whose daughter has mitochondrial disease.  Her daughter is in a wheelchair and has limited abilities for movement and communication.  She can talk, but it's slow and hard to understand.  She's tube fed and not potty trained.  And she has a younger brother.  This friend of mine told a story on Facebook recently of how her son wanted a penny for the wishing fountain, and after he threw it in and made his wish, he told his mom that he wished for his sister to not have mitochondrial disease.  He said he can't wait for it to come true.  THAT was what he wished for.  Not for a new Wii or a special toy for himself, but for his sister to be well and not struggle. 

I have no words, but that I hope and pray that my boy grows up to be like that one.

I have another friend whose daughter is a couple of years older than her brother with special needs.  He is undiagnosed, but is nonverbal, has some CP, and can generally be hard to handle because of aggressive behaviors.  But his sister, she loves him so much.  She goes with her mom when they take him out in public and she helps manage him so their mom doesn't have to do it alone.  And she's getting old enough now that she will stay home alone with him.  She even had her most recent portraits taken wearing a t-shirt exclaiming that she is a PROUD sister of a child with special needs.  How many 11 or 12-year-old girls are proud to push their screaming 9-year-old brother around the mall with everybody staring at her?  She is something special.

I can only hope that Ezra, and our third child in the future, end up like these siblings.  As parents of special needs children, we talk about how amazing our children are.  They overcome so much, and struggle daily with things we can only imagine.  We are proud of them, they do so much.  And yet, it's our typical children who shine especially bright.  I can already tell that Ezra love his sister.  I only hope that that love grows bigger and bigger as they get older.  Maybe they'll even win an award someday.

And in case you want to see that video about Caden and Conner Long, you can click here.

Sunday, January 6, 2013

She's My Child

I'm going through another one of those rough patches in my grieving.  Do you ever stop grieving for what you've lost?  Or does it just come in waves?  Lately, I've been thinking a lot about what our life might be like if Sadie had been born typical.  I think it's because I have Ezra now and my vision is clearer, my eyes have been opened to the world of a typically developing child.  And it's not like I love Sadie any less, but I wish she could play with her brother, and I wish she could run around the house squealing and singing songs, and I wish I could look at her and wonder who she's going to marry someday and how many children she'll have.  You see, these are the things I wonder when I look at Ezra.

This morning we went for a walk as a family and I told Brian that now that we have Ezra, I can see what our life might have been like if Sadie wasn't the way she is.  I told him that I feel almost like we have MUCH MORE this way.  I don't know if I'd have a job that I love so much working from home.  And I don't know if we'd be living in a new house at all, let alone this house in this neighborhood that I am really growing fond of.  And I know for sure that some of the most treasured and special people in my life wouldn't even exist.

Sadie is such a pretty and happy and sweet child.  She is so amazing in all that she does.  But I fear for her.  I fear that her bones are developing incorrectly, and that her muscles are atrophying, and that my lack of consistency with patching her eye and putting on her glasses is going to result in surgery.  I worry a lot over this little child of mine, and I wonder if it's more than I would if she were normal.  But the thing is, when she looks at me with that smile, when she hears my voice and reacts, when I can make her giggle, none of it matters.  Because she's my child and I would do anything for her, I would do everything for her.  I DO do everything for her.  And at the end of the day, none of the what-ifs matter, because this is the family God has blessed me with, and this is the family that I love and that I serve.

This video has been passed around Facebook this weekend.  I started crying when she sang the first line.  I think it's just what my heart needed reminding.  It's all worthwhile when it's my child.

Tuesday, January 1, 2013

Baker's Dozen Check in - 1 month

Happy New Year to everyone!  I hope that your night was safe and fun.  I chose to put grumpy and tired Sadie to bed early, then go to bed with Ezra.  I was out before 9:00 I'm sure!  I was so tired.

So, it's a new year and time for a fresh start for so many people.  I, however, started my new year's goals in December... remember?  So, time for a check in to see how I'm doing so far... (I know, it's only been a month, but it's accountability, right?)

1. Build the bookshelf.  Not anywhere close on this. However, I've THOUGHT about emailing the dimensions to the person I want to build it.  Mostly, this one's about money, it might have to wait a couple more months.

2. Finish knitting sweater.  I'm proud to say that I added 4 rows this week.

3. Paint Sadie's room.  I'm waiting for Grammy to finish her big-girl quilt.  Then I want to add her new changing table (that will be unfinished wood).  Then I think I know what I'm gonna do...big, wide, vertical stripes on the wall where the bed is.  One will be real pale pink, the other a light pink.  Then I'll paint the other 3 walls the pale pink.  And I was thinking of painting the changing table with the darker of the pinks...but now I'm considering a bright color from the quilt.  Hmmmm...

4 & 5. Do a triathlon & run 3 charity runs.  Well, I'm working on getting my feet healthy.  I saw the podiatrist a couple of weeks ago, who gave me cortisone shots in BOTH my feet.  I see him again on Thursday and we'll go from there.  The shots did help, so I'm hoping that I'm finally on my way to it's about finding the perfect shoe.

6. Put family pictures up.  I got some more of them framed!!  That's a start, right?

7. Make my own pasta/tortillas.  I found a good recipe for tortillas and I feel like I am good enough with my rolling pin to try this before my next check in.  Pasta is still intimidating.

8. Organize Sadie's paperwork.  This is intimidating.  I need to check the Raising Special Kids website to see when their next seminar is.

9. Home Management Binder.  Well, I bought a new planner.  I planned out a menu for the ENTIRE month of January, and I'm keeping therapy notes in the daily squares on the weekly pages.  This leads me to the next 2 goals...

10.  Try at least 3 new recipes each month.  Last month I made eggplant parmesan (this isn't really new, but I don't think I was the one to make it in the past, so I'm counting it).  Then we tried a really yummy lentil stew and a vegtable bake over rice that was really really good!!  I also made some breakfast enchiladas on Christmas morning that were completely my own creation, and I successfully baked my first quiche!!  Not to mention, I also tried some new muffin recipes!

11. Keep a Housekeeping schedule.  I've written down my 2 week rotation and I am doing my best to keep it.  If I get behind (like yesterday, we were out of the house from 9:00-6:00 with therapies and doctor's appointments), I just do my best to catch up...or I just start over and worry about getting to the skipped stuff next time it comes around in the rotation.

12. Budget.  We've had to be pretty strict about this in December because of hospital bills and end of the year bills that we didn't realize we would have.  But we managed to stay under budget for December...even with Christmas!!  Bring it on, January!

13. Write my kids monthly letters.  You can read Ezra's here, and Sadie's here for December.

I feel like I'm doing well so far.  I think the hardest part about year-long goals is being constantly conscious of them.  I wrote them down in my planner/home management binder so I can continually refer to them and remember what they are.  I hope that you have some goals for the new year.  Whether they are big or small or you have lots or just a few, good luck and here's to great things in 2013!!