Monday, December 31, 2012

5 important lessons from 2012

As we wrap up another year, I wanted to share with you 5 important lessons I've learned this year.  It's interesting to write on a blog and be able to go back and reflect on how you were feeling earlier in the year.  But, after going through my yearly posts, these are the 5 lessons I'm choosing that stick out to me.

1. Life is precious.  It's also fragile and temporary.  You never know how long you're going to have with someone.  I've had several friends lose their children this year.  My cousins lost their father when my uncle died.  And another family member had a baby who underwent open heart surgery when only just days old.  I hope that in 2013 we spend more time with the ones we love.

2. Even though you're doing your best, and what you think is right, people will still say mean things about you.  My feelings are still a little hurt by that group of people who follow the Skeptical OB.  Our family went through a real tragedy when Sadie was born, and they just offered it up for ridicule.  There was no reverence for our suffering and our grief, or for the grief of others who were highlighted on that blog.  In 2013, I hope that we all spend a little less time judging, and more time offering support and condolences where needed.

3. Healing does come.  I think this was the year I finally accepted what happened to our family and was able to heal from it and move on.  I have found my place in the special needs community, and I have found healing through delivering a child who is healthy and typically developing.  In 2013, I hope we all find our place in the world and can start living our lives looking forward to the future instead of dwelling in the past.

4. Even the impossible is possible.  We got Sadie a new wheelchair.  We were able to buy a new van.  The handsplints have worked to open those fists.  We had a baby who is healthy and strong.  Sadie started school before she turned 3.  I hope that in 2013 we all remember to keep asking and keep pursuing the things we want and need.

5. Children are amazing.  We have so many friends that have so many different special needs.  I spotlighted only a few, but each and everyone is precious and amazing for what they've overcome, and what they continue to fight against each day.  Our lives are meaningful, even if we are fully dependent on someone else in order to live them.  In 2013, please remember to cherish every moment your child gives you, whether they're a typical child or they have special needs.  Tell them "I love you" often, and hold them tight each day. Life is precious and you never know how long you have with them.

Wishing everyone a happy and safe new year!!  See ya in 2013!!

Saturday, December 29, 2012

Sadie's Virtual Birthday Party

Sadie will be 3 on January 19th.  I can't believe it's already been 3 years since that crazy day when I had my first baby.  And that scary week following when I thought I was going to lose my first baby.  But, here we are!!  And we're doing better than expected!

Sadie's birthday is so close to Christmas, that I find it inappropriate to ask for MORE presents.  She made out like a bandit this Christmas... new AFO socks, art supplies and coloring books, clothes, an ipad case, lots and lots of socks, a new hairbrush, and even some pretty clips to hold her hair out of her eyes!  Oh yeah, and she got some toys too!!

So, instead, I wanted to ask anybody who might be interested in celebrating Sadie's 3rd birthday if they might make a donation.  We need a changing table that is big enough for Sadie now, and that will also be big enough for her when she's 10.  The little baby changing table just isn't enough anymore.  I am currently trying to contact the therapist who built her table last year to get a quote, but I imagine it will cost $200-$300.  This is what I'd like to buy Sadie for her birthday.

If you would like to show Sadie how much you love her by donating a gift, we'd really appreciate it.  Just click on the button below and give any amount that is appropriate for you and your family.  If it's not appropriate for you to give for Sadie's birthday, that's okay too!

Have a safe and happy New Years celebration and we look forward to sharing our family blessings with you in 2013!!

Edit:  If we end up receiving more money than we need to purchase the table, we'd like to put it toward buying her a swing.  Something like this.  (note: this link is just the frame, but it shows the whole set up in the picture)

Monday, December 24, 2012

Dear Ezra-2 months

Dear Ezra,

You are my second-born, but you have already given me so many firsts. I've never been peed on like that in my life! I am amazed at how well you sleep at night. And the way you watch me with your perfect vision and smile at me when I talk to you melts my heart. In so many ways you have made me a first-time mom all over again.

I wish I could pick just one thing about you that is my favorite, but, at 2 months old, there are already more things I love about you than I could count. I'll just list a few here... I love your dimples, I love your deep blue eyes, and I love your chubby thighs. I love the way you raise your eyebrows so expressively when you look at something new. I love the way to scrunch up your nose when you nurse. I love the little sighs you make in your sleep. I love the way you fart like a grown man. I love the way you light up when I sing you songs and the way you munch on your hands. I love the way you watch Daddy's phone when he plays games and watches videos.

Sometimes I wish I could keep you so little forever, but I also can't wait for you to grow up so you can play with your sister more. I can't wait to see what kind of person you're going to grow up to be. I hope you have your Daddy's calm disposition and his easy-going personality. I hope you love people and are social like your sister. I hope that growing up with Sadie makes you a kind and caring person who is compassionate for others who are different than yourself. I can't wait to do art projects with you, have you help me bake, and take you to the zoo. You are an amazing child and we will celebrate everything you learn how to do.

You are already growing so fast, I know it'll soon be hard to look back and believe you were this little. You are my boy and I love you so much.

Love, Mama

PS. This is what you look like today...

Sunday, December 23, 2012

I love you, Stinky Face

Dear Sadie,

Your great aunt Elisabeth bought you and Ezra a book for Christmas called I Love you, Stinky Face. It's about a little boy who asks his mom several different times if she would still love him if he were various "horrible" creatures. And she always does. I love this story because its such a great depiction of my love for you.

You are not a typical child, and some of the things I do for you, and will have to do for you in the future, are things that many others mothers don't have to do for their children. However, I don't love you any less for these things. Instead, I think they make our relationship special. I think they make me love you more, because you rely on me for so much.

In the book, the little boy asks his mother, "what if I was a dinosaur with sharp claws that shred my sheets at night when I sleep?" She tells him she'll mend his sheets everyday because, after all, it was an accident. This is how it is with us. So much of what you do that makes extra work for me is not on purpose. And even when I joke or complain about having to heave your wheelchair into the back of the van, even when I get frustrated because I have to wash your pee sheets everyday, even when you choke on your saliva and throw up your breakfast and I have to shower you off and wash everything, I still love you more than I could ever express with words. And I will never stop doing these things for you.

Another thing the boy asks his mom in the story is if she'd still love him even if he were a swamp monster who couldn't leave the swamp or he'll die. His mom tells him she'd just build a house at the swamp so she can be near him and take care of him. Sadie, you are probably not going to grow up and be independent and move out and go to college and get married and have your own children someday. But that's okay, because Daddy and I will always love you and take care of you wherever you are. And if we move to a smaller house once your siblings are grown up and gone, we'll make sure there's still room for you. And if we move to another country, we'll bring you with us. And if we're old and can't take care of you by ourselves anymore, we will make sure your siblings understand how special you are so that they can carry on our love in our absence.

Sadie, I know I tell you all the time, but I can't say it enough. I love you. I love your droolly face and your stinky butt. I love your little fists and your crazy hips. I love your smile and your beautiful hair. I love when you "talk" to me and when you try to give me kisses. You are my first-born, you made me a mom. Your light will shine in my heart forever and when you need me to shine it into the world for you, because they don't understand, I matter how much extra work it is for me. Because, I love you, stinky face.

Love, Mama

PS. I loved when you helped me make Christmas cookies today!

Friday, December 21, 2012

The 15 Days of Winter Christmas Pageant

Sadie loves school.  Yesterday she got to be in the Christmas pageant.  They "sang" (and by sing I mean the teachers sang) the 15 days of winter.  It was sort of like the 12 days of Christmas, but on the first day of winter my teacher gave to me, one tall green fir tree, etc.  Sadie was #8, she was 8 knitted hats.  (I forgot to push record in time to get all 15, so it starts at 13...oops!)

Then, after they did their whole show, Santa came!!!

We had a good time, I got to visit with some of the other parents in Sadie's class, and even found out that one of Sadie's classmates lives just a couple of blocks away!!  ...and she has a swing.  We're gonna go over there for a playdate during Christmas break.

Merry Christmas!

Sunday, December 16, 2012

Neuro-NICU reunion 2012

When Sadie was born she went to the NICU, obviously. But she went to a special section, treated by specially trained doctors and nurses. Sadie went to the Neuro-NICU. Phoenix Children's Hospital (at the time) has 1 of only 2 specially certified Neuro-NICUs in the nation. This is where she was cooled.

Because this is a special place for special babies, they have a reunion each year to see all the cooled babies and catch up with them. Most of them are perfectly normal and typically developing. Sadie was the 47th baby to be cooled at PCH, so we were invited to one of the first of these celebrations, and it was there that I realized that our family was different.

At first I thought we must be really unlucky because most of these children were all going to be just fine, maybe they'd have a small swallowing issue that they'd grow out of, or maybe they'd be at a higher risk of developing seizures when they get older, but none of them were like Sadie. And this was really hard for me that first year.

So the second year we just didn't go.

We keep in tough via Facebook (I love Facebook) with the neonatologist who was Sadie's doctor in the NICU, and she kind of heads up the Neuro-NICU, so I told her last year that I just didn't want to come see all those beautiful typically developing children and know that mine has all these developmental delays and physical disabilities. That was kind of a dark time in my life when Sadie still wasn't sleeping and she was still screaming most days and always in the car, and I wasn't in the mood to go be around people who were living the life I thought we were supposed to have too.

But this year I've gotten past a lot of that. Sadie is happy, she is doing amazing things, and we've really gotten a handle on routines and are pretty good at managing her out in public. She also has a perfectly healthy and typically developing baby brother who has, and is, providing a lot of healing for our family. So, we packed up and headed over there. We visited with Dr. Carballo, who was filled with joy to see all of her cooled babies, not just ours. We sat with a nice family who has a 9 month old who is doing well. Then we took this awesome picture and went home.

By attending this year I realized exactly the opposite of what I felt last year. We aren't unlucky because our child is disabled. Instead we are lucky that our child is alive. Those kids at those reunions are there because brain cooling helped reverse the effects of oxygen deprivation at birth, and they are doing very very well...but I can't help but think of the families who weren't helped by brain cooling, the ones whose babies didn't make it. Really, we should have been in that category and not invited to these reunions at all. So I held my head high at that celebration and I proudly told people how Dr. Carballo saved my child's life, and how lucky we are to be able to be invited to celebrate the Neuro-NICU every year, because Sadie is alive. And she has taught us more about living and brought more blessings into our lives than we ever could have imagined.

Thursday, December 13, 2012

Lily's Golden Birthday

I attended another funeral for a child today.  My friend, and coworker, Alicia, lost her daughter to cancer last weekend.  It's been a long, hard battle, and Lily passed beautifully.  (If you want, you can read about it here)

When I attended Broxton's funeral last February, I mentioned that I don't have a lot of experience with them.  And really, Broxton's and Lilys funerals have really been the only ones I've attended.  And they were completely different.

Today would have been Lily's golden birthday, 13 on the 13th, and her family chose to celebrate her life today as if she were still here and we were having a big birthday party...instead of a funeral.  We met in a courtyard with a huge tree in the middle, where they hung framed pictures of Lily and wrapped Christmas lights around the trunk.  It was beautiful.  They spun and twisted in the wind as if they were dancing.  Even though it's almost Christmas, it looked like a spring Saturday with flowers and white tables and chairs and yellow table cloths.  People were wearing bright colors and I saw more smiles than tears (although, there were plenty of tears also).

There was a man who came up to the front and sang a couple of songs, and before he started the second one, he invited people to get up and dance.  I didn't know Lily very well, but I get the impression that this is exactly what she would have done...even if she was the only one.  And even though nobody got up and danced, you could hear people singing along.

When the music was over, a girl came up and said some amazingly beautiful words she had written ahead of time, then she invited others to come share their memories of Lily.

Lilly's great grandmother came up with a vase full of flowers and talked about how much Lily loved to suck on the stems of this certain flower because it tasted lemony.  And many people came up and talked about Lily's strength and how she got that from her mother, who is also incredibly strong.  Then Lily's brother came up and read something he'd written just after Lily had passed away.  He remembered his sister fondly and expressed his sadness that she was always sleeping when he'd go visit her at the nursing home (Ryan House).  Then he said, "I remember holding your cold hand for a long time after you'd gone," and you could tell that this small thing meant so much to him.  And at the end, he said "goodbye."  And I cried like crazy.

What was neat was how every person who got up and spoke about Lily said the same things... she loved nature, she loved being outside, she loved life.  She never complained, she was always happy, she loved people.  She was so strong.  I think it was her grandpa who got up and said that as he was looking back at pictures, in over half of them Lily was hugging someone.  I wish I had known her better/longer, because she sounds like an amazingly sweet girl.

I think the most amazing thing about Lily's funeral today is that, even though it was sad that life had ended for this little girl way too early, the people there weren't overwhelmingly sad.  I got the impression that Lily wouldn't have wanted people to be sad for her, she would have wanted them to celebrate all the love and happiness her life represented...and that's exactly what they did.

You will be greatly missed, Lily Lopez.

Wednesday, December 12, 2012

Santa sighting

I saw Santa today.  Apparently he lives in my neighborhood. 

And he drives a red VW Bug.

He caught my eye as he waited for me to pass before pulling out of the side street onto the main street and he nodded, as if he knew if I'd been naughty or nice.

This morning, as I was driving Sadie to school in all my hustle and bustly bad mood, there was a man driving a red VW Bug wearing a Santa suit.  I actually laughed out loud.  It made my day. 

I love this time of year!

Sunday, December 9, 2012

Christmas at Ryan House

Yesterday we went to see Santa.  And we also visited Lily.  Both of them were at Ryan House, both of them lit up the room they were in.

Ryan House had a Christmas party for all the kids who take advantage of their respite facilities.  There were kids zipping around in power wheelchairs, climbing on the playground, and sitting in their wheelchairs next to their parents.  We saw people we haven't seen in a long time, and reconnected with people we haven't seen in an even longer time. 

Santa held both of my children and told me what a blessing each of them is.  And I thanked him, while admiring the glitter in his (real) beard.  He was obviously not your average rent-a-Santa, he had a special heart, and a twinkle in his eye.

But while all of this was happening, while children were laughing and playing and taking home toys, Lily was just down the hall fighting for her life and losing terribly.

You see, Lily has bone cancer, and she's on hospice care.  She is at Ryan House to die.  Knowing this, made visiting Santa yesterday bittersweet.

I am so thankful for Ryan House and all the things they do.  For Santa and playgrounds and reuniting me with old friends.  For making me feel normal with my tube-fed, non-verbal, physically handicapped child.  But, I am also thankful for Ryan House because they are making Lily's last days enjoyable with tea parties and art projects.  They are giving her mother, my friend Alicia, help and rest that she so desparately needs. 

And that's what Christmas giving is really all about.

Monday, December 3, 2012

My 2013 Baker's Dozen

I have a friend who wrote a list of yearly goals last winter.  She called it her Twelve for 12.  I thought this was a fantastic idea, but Thirteen for 13 just doesn't have the same ring to it!  So, instead, I'm calling it my Baker's Dozen.  And technically, I started this month, so I have 13 months to reach my goals.

Here's my list:

1. Build the bookshelf.  Well, not me really, it's more like have the bookshelf built.  We have this really awesome bookshelf in our living room!  It even has this fun rolly-ladder, like in a library in Downton Abbey or something.  But, it's about 4 feet off the ground, and there's this weird space below it.  I'm sure the previous owner, who built this originally, had some piece of furniture there.  I want a custom-built extension of the bookshelf...and I think I've found someone to do it.  Now I just have to find the money!

2. Finish knitting sweater.  Last April I started a project.  I'm always good at starting's the finishing and following through that's the hard part!  I started knitting a sweater.  It's a cardigan, which are very practical here in Phoenix.  And it's not real heavy (also practical in Phoenix).  My goal was to have it by the time the baby came since that's when the weather would change.  Oops!!  So, I'm officially making it a 2013 goal to finish my sweater!

3. Paint Sadie's room.  Slowly I am going to get this house painted.  It's a lot of work (especially since I usually paint alone) and I want to make sure I choose the right colors.  8 or 9 months ago I bought this really cute fabric for Sadie's room.  I wanted to make her a valance and a pillow case and then choose paint based off the colors in this fabric.  The valance is made (but not hung), the pillow case is made (even though she doesn't really use a pillow), and I have paint swatches of colors of pink picked out.  I gave the leftover fabric to my mom to make Sadie a big-girl-bed quilt, and once I see that final product, I will choose colors for sure and decide what I'm going to do in there.  It's a small room and a good place to start.  I almost put Ezra's room on my list too, but I thought that might be a little too ambitious!

4. Do a triathlon.  I found one in July in Flagstaff... think I can be ready by then?  I might give myself 2 years on this one.  As long as I do it before I get pregnant again!!

5. Run at least 3 charity runs.  I really miss running.  It seems like I started when I wasn't totally healthy and since then I've had one problem after another.  As much as I want to be a runner, I'm just not built for it.  That's okay though, I can still do 5Ks, right?  That's not that far, and I could easily walk it if I needed to.  The first one I'm looking at is for Ryan March.  Think I can run 3 miles by March???

6. Put family pictures up on the wall.  We've lived here a year and all our family pictures are still in boxes.  That's because I was going to paint before I put them up.  But then I got pregnant.  So, whether I paint or not, my goal is to get all of those out and start hanging them.  Plus we got all these nice, new family portraits, and we have a new now I have more pictures that need hanging on the walls!

7. Make my own pasta and/or tortillas.  I've always wanted to do this.  I kind of think if I put it on a list, maybe I finally will.

8. Organize Sadie's paperwork.  Raising Special Kids has a workshop where you bring all your child's paperwork (IEPs, IFSPs, medical records, etc.) and they give you a binder and teach you how to organize it all into one place.  All of Sadie's stuff is in one place...but organized?! hahahaa

9. Create a Home Management Binder.  This might actually be more like a Home Management Day Planner.  But I'd like to work on keeping everything in on e place and not scattered all over the house...especially now that I have a child who will soon have grabby hands!

10. Try at least 3 new recipes each month.  I told Brian I'd like to make something new each week and he thought this was too ambitious.  3 a month, though, is's too easy to get stuck in a rut with our menus each week!

11. Keep a housekeeping schedule.  You'll notice that my goal isn't to MAKE a housekeeping schedule!!  I'm good at making a plan (aka. starting a project), and then I stick to it for the first week, maybe 2 before my house turns back into a trash pit.  I made a weekly chore schedule, as I've done before, but, as I stood in the shower the other day enjoying my alone time, I realized I needed more off-days/catchup days.  Because sometimes things don't go according to plan!  I also realized that once I clean the bedrooms or bathrooms, they don't necessarily need to be cleaned the next week... they're probably good for 2 weeks.  So I rewrote my chore schedule to span 2 weeks instead of just one.  Here's my plan:

Week 1:

Monday - Bedrooms

Tuesday - Vacuum living room rugs

Wednesday - Mop

Thursday - Rest or Catchup (it's like building a leftovers day into your weekly menu!)

Friday - Kitchen (this is a weekly's gets really gross really fast)

Saturday - Errands and Groceries

Sunday - Rest or Catchup

Week 2:

Monday - Outside (including the car)

Tuesday - Bathrooms Day 1

Wednesday - Bathrooms Day 2 (we have 3 bathrooms and I often find I get 2 of them done and run out of time or steam, so I allowed myself to split this chore into 2 days.  I think I'm more likely to actually complete it this way!)

Thursday - Sunday look the same as week 1 above.

12. Stick to a budget.  Enough said.

13. Write my kids monthly letters for them to read someday when they're older.  I don't want to ever forget this time when they're little.  As they get older, maybe it'll just be on their birthdays...

There you have it!!  I look forward to updating you on this throughout the year, and I hope you are encouraged to make your own 2013 Baker's Dozen!