Family Pictures

Thank you to our super talented friend, Nicole Fields for taking these pictures in our home. We love them. And yes, we serve bloody marys when the photographer comes over! 

 

Hey Batter Batter...

And soccer player, and swimmer! It's that time!

Wow, are we going to have one busy family.

Lucy is continuing on her indoor soccer team. All Dylan, Trevor and Cody are all playing baseball this year. And, Gabby will start Special Olympics Swim the second weekend in March.

I can feel an anxiety attack as I type this.

Currently, Andy is working on re-vamping our desk area where we hang our family calendar (in the kitchen) so that we can accommodate two calendar months, not just one.

Don't mind that this all comes on the heals of the hardest school year (in terms of schedules) ever! We have 4 schools & 5 different school schedules. That alone is EXHAUSTING. Sometimes Andy and/or I are in the car for a 3 hour stretch doing drop off or pick up.

WE CAN DO IT. WE CAN DO IT. I keep telling myself this.

Oh yeah, and we also decided to gut our playroom and turn it into a kids office area. No. Big. Deal.

The kiddos literally touched every single toy in the playroom to decide if they wanted to keep or toss. So many toys donated and/or sold on craigslist! 

Check back for an update on this project! 

What's In A Word? What's In A Look?

Today is Spread the Word to End the Word Day - where people are encouraged to pledge to NOT use the word Retard. When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.

Of course, this word is especially hurtful when we hear our friends and family use this word. So, it's important to us to educate and help explain WHY this word hurts us so. 

We all know that the saying "Sticks and stones might break my bones, but words will never hurt me" is the farthest thing from the truth, right? 

But what about body language? 

A few weeks ago, DSIA had our first Self Advocate (person with Down syndrome) join our board of directors and she attended her first meeting. I loved spending time with her. She was funny, smart and full of spunk.

Unfortunately, there was a mis-communication about who was giving her a ride home/picking her up after the meeting. So, I waited with her outside. Our board meetings are downtown, on Capitol Mall. We waited on the corner outside a really nice restaurant. It was the day before Valentine's and there were a lot of people coming and going into the restaurant. We stood there talking, looking for her ride, checking our cell phones....looking perfectly "normal."

Except not.

And the looks from others proved it to me.

Disgust

Horror

Disgrace

Bothered

All words I would use to describe how people felt when they saw us. All because one of us looked different. I would love to think it was because of my way too casual look of sweatpants, but, I am heartbroken to know it was because she had Down syndrome. Because she was different. 

So much work done, so much much much more to do.

And I will not stop. My hope is Gabby will never know those looks.

And if she does, my hope is she won't care. She knows better.

Down Syndrome Awareness Month & Gabby's Birthday

Is it any wonder that they share the same month?

This year, Andy asked why is it that I get so emotional on Gabby’s birthday. I don’t have this same overpowering weepiness on Lucy or Evey’s.

It’s hard to put into words.

12 years later I can still remember everything about that day. The dimness of the labor room. How scared and tired I was. Finally being moved to delivery. How very hungry I was. And when the doctor told me I could start pushing – after 39 hours of labor I could not wait to me my baby.

The room immediately filled up with doctors. There were some other complications with the birth and I was eagerly waiting for someone to yet “It’s a…...”  Finally someone said “girl”. I could not believe I had a daughter.  And then I held her. I never experienced a love like that.

And after awhile, the doctor, Gabby’s dad and his uncle all gathered around the bed to tell me she had Down syndrome. I cried and cried. I asked, “ How do you know?” And the doctor said, “I can tell just by looking at her.” And I said words that will forever haunt me, “But she’s so beautiful.” As if babies with Down syndrome were not beautiful.  And then he told us we had options – we could put her in an institution. And I was immediately snapped out of my sadness. Did he really just say that? I don’t remember what happened next, it was a blur – I was so emotionally and physically exhausted.

After a bit, we had a visit by Melinda and Cindy, life long friends of mine. Melinda was the only other person I knew who had a child with a disability – and I remember her looking at me and saying, “You can do this.”

I remember asking if we still wanted to name her Gabriella. As if somehow she wasn’t good enough for that name now. I didn’t understand any of my feelings.  When I looked at her, I just thought, “Oh my, she is such a Gabby Girl”

The nurse swaddled Gabby up and said she was taking her to the nursery for a bottle. I explained that I had every intention of breastfeeding. I don’t even think we had bottles at home. The nurse just smiled and said, “Oh honey, these babies don’t breastfeed.” I don’t remember what came next, but the next thing I knew I had that baby in my arms, cuddled up to me, trying to nurse. And it was then that it dawned on me, that for the rest of Gabby’s life, people would tell us what she couldn’t do and it would be up to us to prove them wrong.

Once we left that hospital, I never looked back. Taking her home provided such healing. Our days were filled with normal baby stuff – we did have extra complications with nursing, but after 3 ½ months, we figured it out and she nursed until I became pregnant with Lucy. Gabby was my best friend – I loved spending every single minute with her. I slept with her cuddled up in my arms next to me. We took the dog on long walks and spent time with friends and family.

Since starting DSIA in 2004, it has become my passion that people see people for who they are – not what they can offer or give you, not for what they might become or do with their lives. I often say that having a child with a disability is so freeing. It taught me to love unconditionally, in the purest form.

What I would love people to know is that people with any sort of disabilities are just like you and I. They love, they feel, they learn, and they teach. Sometimes they do things at a different pace or a different way, but they try just as hard, if not harder than someone who does not have a disability.

My hope, in the coming year, with DSIA’s Medical Outreach Program that we can change the way doctors give a diagnosis. That it is not riddled with misinformation and fear. That professionals are educated about what living with Down syndrome is truly like – and there is support and love out there to help you in this journey. 

To this day I am haunted by my sadness on October 30, 2001. I feel like I betrayed my daughter by feeling so sad over who she was. In truth, she is perfect. Blissfully perfect.

"Had I any inkling of what (her) life would be like when she was born, I wouldn't have shed a single tear." Ellen Jennings

Middle School and Letting Go

This year Gabby started Middle School, 6^th grade or Junior High…however you want to see it. Big stuff, Right? 

She started on August 15^th, a Thursday. Her aide from elementary school, Mr. Williams, met her there and stayed until she told him to leave, which was after second period. He made Gabby show him where her classroom was, her locker, the gym etc.…. He told her, “Gabby, I don’t know this school, it’s your school, and you show me around.” He had sent me text stating that she was doing great and was getting the hang of getting around.

So, on the following Monday, I took her to school and on our drive (which is from West Roseville to Carmichael), I asked her a few questions.

“So Gabs, tell me again what class you have first?”

And she said “PE”.

“And what do you need to bring to PE again?”

“Just my binder”

“Do you need your locks?”

“No, no locks yet, they will tell us when we need our locks for our PE lockers”

“I forget, what room do you go to?”

“25.” 

AWESOME. She knows it all! So, I walk her up to the hallway that leads to the lockers, say bye and walk away with Lucy. Lucy and I get about halfway around the building and I tell her, I have to go back. Lucy can tell that I am crying and she asks if I am worried about Gabby and I tell her yes. I look down the long hallway and Gabby is standing at the end, almost to the hallway she needs to go down for her locker. She’s looking around, and then her shoulders pick up and she knows where she needs to go. We watch her put her stuff in her locker and we walk away.

There are teachers at the end of every hallway making sure kiddos are going where they need to go. I stop to talk to one but I was having a hard time through the tears. But he gets the gist of what I am worried about and calls over the principle. The principle is so nice and he walks Lucy and I back to his office, pulls up Gabby’s student file and says, “I’ll got check to make sure she is where she needs to be.” About 3 minutes pass and he walks in with 2 thumbs up and says she’s in room 25 listening to her PE teacher lecture. He reassured me that he had met with Mr. Williams last week and Mr. Williams was VERY confident that Gabby could handle this new transition. The principle then hands me a handful of Tootsie Roll Suckers and tells me to have one every time I am worried about her today and to remember that she can do this.

Of course she can. She knows what she is doing.  She’s got this.

I’m bursting with pride and happiness. And a little bit of shame that I doubted her abilities.

Picking her up was amazing. An aide walked out with her to let us know how great she did. She said, if she were I, she wouldn’t think twice about dropping her off. Gabby knows what she is doing, where she is going and what she needs to do. I thought my heart was going to burst open. Her and Gabby then rattled off names of all her friends in each class and lunch. AMAZING!

I high fived my girl and we headed off to pick up Lucy. Gabby ran into her 5^th grade teacher and Mrs. K hugged her and said, “Gabby I have missed you! You were my inspiration!”

Truth is, Gabby is my inspiration too.

It's been a year

… a year since we have last posted. A year of ups, downs, and changes.  And this blog is a place for us to share…. So we can learn from others and ourselves.  This post contains some pretty personal topics and strong language… So, read at your own will. 

I have been struggling with the balance of work and home life – and it leaves me tired and on edge. Andy is at home all day with the kiddos, which leaves him wanting adult conversation. We have been struggling in our partnership. So, we are working on some options and continue to make sure we are taking time for ourselves. Most importantly, we are focused on talking about things. You would think after three years, I would figure out this whole communication thing. We are focused on getting US back on track. We notice that our kiddos do better when we are doing better. Go figure!

Family update… we now have a Junior Higher! And Gabby is rockin' it! Lucy is in 5^th grade, Dylan in 3^rd and Trevor is in 2^nd.  Cody started Kindergarten at the same school as D & T. Evey will be starting her last year at Tricks Preschool. WHEW! In addition, T and C moved out of car seats and into booster seats and C & E are taking showers by themselves! Time, please slow down!

Milestones…. This summer we were deeply aware that it was the mark of Dylan now moving in a direction where he has been alive longer without Jen, than with her. And of course, since he is the oldest of the boys, that’s been true for Trevor and Cody even longer. The boys started an Art Grief Therapy group back in April. They go every other Tuesday and it gives them a place to talk about Jen and share. We are hopeful that the stories that Dylan and Trevor are sharing are creating memories for Cody. They seem to enjoy it and really look forward to it. And, Andy has met another Dad who lost his wife to cancer and Andy feels he’s been able to be of some support. I have no doubt he is.

This summer also brought along BIG conversations for me, Gabby and Lucy. One morning while Andy had the 4 littles at a birthday party, we were able to have a nice long conversation about body changes. I had had a few discussions with Andy, their pediatrician, and friends and felt I had a good plan. We talked a lot; we read books and had a small demo with grape juice and feminine products. TMI, right? Well, it has to be done! HA HA. Gabby was pretty focused and took away some key points of the conversation. Even though her body seems far off from ANY changes, I know that she will need more time to grasp all of it so it’ll be a lot of revisiting…. Which is fine since Lucy asks questions NON STOP.  After about 3 hours of talking, she grabbed her journal and wrote copious notes, making lists of what brands of deodorant, tampons and pads. It was sweet and she doesn’t seem embarrassed at all to ask any questions. SCORE! There's not many times I feel like I am rocking this parenting thing - but this day I felt on top of the world! 

About 6 weeks after the talk, Lucy ran a duathlon, and had been complaining of pain in her breast area. We noticed very small growth and decided this, paired with Gabby starting middle school was the perfect time to go bra shopping. Did I really just say that? So, yea, we have a middle schooler and 5th grader who wears bras! Again, time, please slow down!

We spent a lot of time at Grandma Betty and Papa's pool this summer and Dylan and Trevor learned to swim without their life vests! So Proud! And, Cody and Evey are SO close! 

Some other changes…our lab Annie, has come to live with us. She was staying with Gabby and Lucy’s father when we moved in with Andy and the boys. After 2 years of getting our routine down, I was ready to add her back into our mix and Andy was excited to also! She is doing great here!

We are busy with home projects…whole house fan, recessed lighting and adding new pictures. We are looking forward to painting room by room and some smaller projects.

About a week before school started, Andy and I found ourselves with a night alone and headed up to Tahoe. It was FANTASTIC and just what we needed. We erased some bad memories. We do that by going to a place that one of us has previously been and where had created a bad memory, for whatever reason, and create a great memory there together. We call it PIPE WRENCHING it. It’s a reference from Good Will Hunting. When Matt Damon’s character Will, is talking with Robin William’s character, Sean, about his dad giving him options when it came to a beating and he would pick the wrench.

Will: He used to just put a belt, a stick, and a wrench on the kitchen table and say, "Choose."

Sean: Well, I gotta go with the belt there.

Will: I used to go with the wrench.

Sean: Why?

Will: Cause fuck him, that' why.

We also created some amazing memories of our own. It was so wonderful to just be able to sit at talk. We had drinks at Fire & Ice, Pizza at Blue Dog Pizza and a fantastic breakfast at Beach Bear Café, overlooking the lake. We then hiked around and headed home via Truckee. We ate some more… at Bar American and had beers, bought fudge and headed home! It was PERFECT!

Here is to building memories, more time together and more time to blog!