#sharethelove

You know that old saying "it takes a village to raise a child?" I never fully understood the meaning behind it until I joined the Rockin' Mom groups through the Down Syndrome Diagnosis Network. There is such comfort in knowing I can navigate through this sometimes uncertain journey, and that I will always have these moms to lean on. We will always have each other, through thick and thin. Our kids are growing up together and they too will have each other. It's a connection unlike anything I've ever experienced.

We have decided to raise funds to help our amazing DSDN families grow and thrive. The DSDN shepherds kids from 0 to age 3, and provides support to the families of these children through the #sharethelove Rockin' Family Fund. We are one big rockin' family.

Who are these rockin' families? Please watch and find out in the beautiful video below:

#SHARETHELOVE Video

With only one week left in our fundraiser we are hopeful that we can reach our goal of $10,000! Please help us get there by clicking this link and donating, every single dollar helps. If you want to read a really thoughtful post about it, my co-advisory board member and co-video planner Jisun explains it much more eloquently than I can here. 

We thought it was important for you to know our kids and to have a glimpse into our lives. Jisun and I reached out to our Rockin' Moms for photos, and we received hundreds of gorgeous submissions. My brother Joey generously donated his video creating services. After many long nights, multiple messages, lots of editing and rearranging, he had to gently tell us that if he used every photo we received that the video would run for 30 minutes! It was painstaking to narrow it down into a 5 minute video. Below are some examples of the stunning images we received.

Please help us fulfill our mission and give our Rockin’ Families the support, love, courage, and community they need. Are you wondering where the funds go? Your donations will enable us to help our families in the following ways:

1. Welcome
When a pregnant or new mother first hears the words "your baby has Down syndrome", it can be a time full of uncertainty for what the future holds. DSDN is there to welcome these new parents into our Rockin' Mom support groups. We estimate that our Rockin' groups will grow by 500-600 moms this year alone! Having others who understand what you are going through is invaluable.

The Rockin' Family Fund will enable us to send a small gift to each new mom and child that join our network, ensuring that every family is able to see the celebration in this new life.

2. Support

Sometimes our Rockin' kids are sick. We have some children who require heart surgery, long hospital stays and encounter other medical concerns. It is such an amazing feeling to be able to brighten a family's day with hope when facing medical uncertainty.

The Rockin' Family Fund will help us send care packages to families facing medical issues and extended hospital stays.

3. Comfort 

Sadly, we have lost a few of our babies in our DSDN Rockin' Family. It is heartbreaking to see the announcement when a child passes away. It is important for us to support these families through the hardest time of their life. Late last year we began sending memorial wind chimes to families grieving the loss of a child. Every time one is sent out, our hearts break knowing what that family is facing. The Rockin' Family rallies around these parents and we come together to mourn the loss. We have also created a loss support group so these families will have each other to lean on in the days ahead.

The Rockin' Family Fund will help us continue to send a personalized memorial wind chime to families that experience a loss.

4. Empower

Many times upon learning of a Down syndrome diagnosis, families will have a thirst to gather as much information as possible. There are many local and national opportunities for education through conferences, retreats and classes. But sometimes there are financial limitations keeping families from attending.

The Rockin' Family Fund will enable us to empower families to seek out information and resources to best support their family.

Can you help us #sharethelove? Please donate today and offer the gift of hope to these families.

They Are All So Happy

I have an announcement. Ellie, my sweet precious Ellie, is NOT always happy. She just isn't. In the 7 months that she's been on this earth, she has been everything. Happy, sad, frustrated, excited, curious, mad, stubborn, the list could go on. Name an emotion and she's probably experienced it. 

Pre-meltdown phase

Let the drama begin!

Will looks around like someone is going to help him!

Seriously mom, HELP ME! (says Will)

When I tell people my daughter has Down syndrome I almost always hear "oh, they are all so happy", or "they are all so sweet". I am trying to figure this phenomenon out because so far, Ellie is a lot like her big brothers. She spits up like them (rrr!), she giggles like them, she smirks like them, she cries like them. When people refer to her as "they" it feels like she's part of a whole different species, do you get what I'm saying?

There is a preconceived notion, myth, or stereotype about people with Down syndrome that "they" are always happy, or "they" are always sweet. Well Ellie wants me to tell you this.. "she" is just herself. It's just like saying "all gingers have no souls" when we know the truth, only some gingers have no souls. Hehe. 

So that is my PSA for the day. People with Down syndrome are each unique individuals just like you and I. They laugh, they cry, and sometimes, damn it, they have throw-down diva fits like it's their job!! 

My song of choice for this blog post is "You are so Beautiful" by Joe Cocker. I love this song, and it makes me think of our Ellie girl. BUT I also love that my dad once arrested Joe Cocker in Cali back in the early 70's. Famous family story right there! 

You Are So Beautiful - Joe Cocker

My 2 Month Old Secret

I feel really guilty and feel like I need to write about when I told my brother Danny about Ellie's Down syndrome. She was 2 months old when I finally told him (as I hang my head in shame.) 

I have 6 brothers, 5 real and one adopted. My big bro Danny (the second oldest boy) is special (there's no better way to put it!)  When he was born my mom said he was like any other baby and was a happy boy.  He also had a patent vitelline duct, which means his little belly button was herniated. This was in the mid 1960's and his doc told my mom it was no big deal when she voiced her concerns over the phone.  When Danny's pediatrician finally saw him he was shocked over the size of the hernia and they scheduled surgery immediately.  He was 6 weeks old.  When my mom and dad brought Danny home they said he was a different baby. According to my mom, he was lethargic and would just lay there.. if she would lay him on his tummy he would lay face down and not move. Heart breaking. Her gut instinct told her it was from too much anesthesia. 

Could they be any cuter? My 5 brothers, Danny is in the upper right.

My brother Danny and I, 1978

Danny and I in 1995

As Danny grew up he was delayed, but the docs never really knew the reason behind his delays. They just told my parents he was slow.  He is now a 47 year old stud, who has lived in the same apartment for 25 years. I told him he's the best tenant that has ever lived! He's also a devout catholic and in the Knights of Columbus. He loves to say he "has to pray hard to get this family to heaven".  He's awesome and he's our angel. He also proudly tells everyone that he is "Rainman" because he literally can tell you any sort of sports history you ask him about... who won the Superbowl in 1977?  He would tell you not only who played, who won, but also the scores. Oh and yes I chose 1977 because that is one of the years the Raiders won. If you ever meet Danny ask him about the Raiders. He is the most loyal fan I've ever known! Just don't ever say "Raiders suck", as my brothers can tell you, Danny has a punch called the "hollow back" and it can knock your butt down in 2.2 seconds. 

My brother's fake band pic... love this one.

Where am I going with all of this? Well when Ellie was born we relied on my brother Matt, my mom and in-laws and text messages to get the news out to our friends and family.  The task of telling Danny about Ellie weighed heavy on my heart. Danny is a worrier, big time.  I had heard him talk about people with Down syndrome, one of his friends has a daughter with DS who is now 9. She battled leukemia.  Every time he mentioned her he says she's the "girl with Down Syndrome and leukemia". I just knew he was going to worry about Ellie.  I worried about him only thinking of her having Down syndrome and not thinking of her as his niece.  She makes him an uncle for the 7th time by the way, which is his favorite number. :)

I kept mustering up the courage to tell him and every time I would call it would be a busy signal (he's a big chatter on the phone!) So finally one day he called me while I was laying on the couch snuggling Ellie. She had just turned 2 months old. I said "hey brother I have to tell you something about Ellie that I haven't told you yet" and he said "What, T?" and I told him. He said "Awww!!" but not in a sad way. Imagine it being said with excitement.  "She does?!?" he proclaimed. I was so nervous. He then said "She's a gift from God Tiff! She's going to be awesome!" Yep and then the tears started. "Darn it Danny!" I said... "there I go crying again!"

So there you have it. Uncle Danny is fine with Ellie's diagnosis. Shame on me for worrying about it, I could have used his love and support in the beginning but I was too scared to tell him. 

First time Uncle Danny met Ellie.

Oh they will kill me for putting this picture up! 3 of the 5 were actually in the Army. 

Almost the whole crew, missing brother Joey from Texas.

Daniel My Brother - Elton John

Feeling Good Again: Ellie's Health Update

Ellie was born with a heart and neck issue, and for the past 2 months I feel like I've been holding my breath hoping she's OK. Well this past week she had an MRI and cardiologist appt, and I'm happy to report that she's doing amazing (woooo hoooooo!!)

A little bit about her neck.. While Ellie was growing inside my belly, she was laying in an awkward position, with her head touching her back (see pic below.) At the time, my OB said it could be a neurological issue, an osteo issue (like she would eventually need a helmet) or it could be nothing at all. When I googled "hyperextended neck" the first thing that came up was a baby with Down syndrome. Even my friend from work found this info online and asked me if it could be DS. I immediately brushed it off since all of my prenatal testing never suggested DS (surprise mom!!)  Jesse says she's like an owl, which is fitting since that's the theme in her room :-P

The crazy position she likes to sleep in! I had to send this to her pediatrician to show him what I was talking about.

She has a really floppy head and it's taking her longer for her to get her neck strength and to hold her head up. She had an MRI last Wednesday to look at her neck and brain stem.  Her pediatrician mentioned hydrocephalus, talk about making this mommy worry! Her MRI results are in and her neck looks FINE! We are starting physical therapy this week to help with this, what a relief.

Then today she had an appointment with the cardiologist. He's one of the best around, so I felt really confident in him from the beginning. He's the same doc who detected her issues in utero.  So today they did an ultrasound of her heart... the issue has resolved itself, the PDA closed on it's own! There is "no follow-up needed" ah, we are so grateful!!

All dressed up to go to the big city for her heart appointment.

I was feeling a little "heavy" today, trying to not worry about Ellie's heart. What if she needs surgery...? I could feel my emotions in my throat and was dreading any bad news, like I was going to lose it any second. The number of appointments she has is already overwhelming. I just hope that now that her heart and her neck are "OK" that I can focus on loving my baby. I also got this in my email today and found it quite reassuring (it's from the Secret):

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise.

When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Hi guys! 

I'm by no means saying Ellie's birth is a "negative event" but her diagnosis is definitely a new path that our life is on. I feel like I can breathe a little easier knowing that her lil' ticker is working and that her neck will get better with time. ❤

Robert Earl Keen - Feeling Good Again

The Girl of our Dreams

It was winter of 2008, our son was a year and a half and we were anxiously waiting to find out if he was going to have a new baby brother or sister in May. Shortly before the gender ultrasound I had a vivid dream about a little girl. I don't remember what was said but I knew she was my daughter. She was adorable, her hair in two pigtails and she was wearing little glasses. She also had Down syndrome. I woke up feeling uneasy about my dream. There's no way I'm going to share this with Jesse. The pregnancy was uneventful so far... This baby is fine, right?

We went in for the 20 week ultrasound. Jesse squeezed my hand as the wand slid over my big belly. "Do you want to know the gender?" "YES!" We reply in unison. We had been taking bets, he says boy and I know in my heart it's a girl. As the ultrasound tech gets a peek at the "potty shot" I knew immediately. "It's a boy!!" My husband actually blurted out "Yesssss!!!" And it bugged me. I thought for sure I was pregnant with a girl. This whole pregnancy was so different than my first. But I saw the little pee-pee on the screen, he was definitely a boy. My husband apologized and said "but I'm going to have two boys... Two! They will be buddies for life!" I was so excited too, the idea of pink, tutus and bows faded quickly and I was truly grateful. Two healthy boys, this is going to be awesome!

Then as the ultrasound went on I was chatting with our ultrasound tech. I mentioned how I couldn't imagine how hard it would be to be in her shoes when she finds problems on the ultrasound. She nodded her head in agreement and said "I need to go grab the doctor, and will be right back." You've got to be kidding me. I look at my husband and say "seriously? How can this be happening again?" And I burst into tears. Jesse and I lost our first baby and this was bringing back all of the pain and emotions we felt during that time. Lightning can't strike twice, it just can't.

When she came back the doctor came to my bedside and started to show us what they called "soft markers" on the ultrasound. "See this bright spot in his heart? It's an echogenic focus... And here in his bowel, that is a hyperechogenic bowel" Jesse and I were terrified, we could see it with our own two eyes! But what does it mean? The doctor explained that they were soft markers for Down syndrome. Oh my gosh, Down syndrome? My heart sank and I immediately thought of my dream. It's mothers instinct, he has Down syndrome, he has to! Why else would I have a dream about that particular diagnosis? I look at Jesse and the color was gone from his face. I'd never seen him look so scared.

We opted for the amniocentesis because we wanted to be prepared for what the future held. Jesse was on a work trip so my mom took me and helped me take care of Will. I stayed on the couch for a full 24 hours to be safe. The 3 day wait for the FISH (quick turn test) was the longest 3 days of my life. My OB called with the results, our baby boy has "typical chromosomes". I was so relieved and I immediately call Jess with the news. "Babe, he doesn't have it, but I have to tell you something".... "What??" He seemed concerned, so I told him about my dream. About this little girl who I knew was mine, with pigtails and glasses, and Down syndrome. He was silent.. "Honey?" And he says "I had the same dream." In his dream he was at a football game, standing on the sidelines watching the game. His daughter was next to him, and she had Down syndrome. He didn't want to tell me about his dream either because it scared him. He didn't want me to worry. We were confused as to why we would have the same exact dream, but 4 years later it would all make sense.

Christina Perri - A Thousand Years

Lucas John born in May 2009

Daddy and Luke

Mommy and Luke

My boys

Big brother holding "Woot" for the first time