Tuesday, March 27, 2012

Witness to a sweet exchange

At church on Sunday Lila and I sat next to a guy who has downs syndrome. He is about my age and is a super sweet guy who always plays with the kids in the ward. He started to rub Lilas feet and her arms. I wanted to tell him that Lila has special needs because I didn't want him to feel bad that she wasn't responding to him like the other kids do. But I didn't know quite what to say so I didn't say anything. All during Sunday school he continued to be in contact with her one way or another. After class was over I put Lila in her stroller and was chatting with a friend. I realized that the guy was still touching Lila and giving her loves. My friend and I sat and watched. He rubbed her arms and legs and sat and talked to her. It looked almost like a sweet reunion. Then he kissed the palm of his hand and put it to Lila's cheek. As he turned to go it was the first time I saw his face. He was sobbing. Tears streamed down his cheeks as he walked by me. I tried to reach out and give him a love but he quickly walked away. I have to wonder what was passing between these two great souls. What he can see when it comes to Lila that I can't. I am sure he is so sensitive to her sweet spirit as she is to his. Once again it was a reminder just how special these special needs people are.

Saturday, March 24, 2012

Gracies Iion house B-day party

Gracie invited Lila to her 9th Birthday party at the Lion house. How sweet is that?! I must admit I was very excited to tag-a-long. Talk about reliving your childhood. I remember when I had my 8th birthday there. It was so fun. We pulled taffy, played games, opened presents and had birthday cake. Lila gave Gracie a webkin and some Giraffe Earrings. I love that Giraffes are their special thing. Thanks for having us part of your day. Love you Grace.

People are amazing! Thanks Holdaways

At Eliza's birthday party a few weeks ago I met a mother, Lisa, who had lost three children to MLD the same genetic disease that Eliza suffers from. We got to chatting and I felt like I had found another kindred spirit. We were able to relate about our special needs world and were able to talk about the realities of having to face the fact that you will say goodbye to your child in this life instead of them saying goodbye to you. I felt very uplifted by her.
This week I was surprised to see I had received a package from her. In it was this adorable outfit and a few articles and how to survive the unsurvivable. I just sobbed! Thank you so much Lisa! That was so incredibly kind.
Just when you are starting to think that this world kinda stinks you are reminded how many good people there are out there. I was so touched. It just melted my heart and again inspired me to be a better person. I have been amazed by these warrior moms, these angel keepers. They have written me notes, sent gifts and offered me words of courage. Even when they are facing the same trials or even worse. It is humbling! I love you guys. Thank you especially to my special needs moms Nikki, Lisa, Nichole, Shirley, Sandy, Rachele and Tiffany. And to all the other Moms and friends who support us!

Sunday, March 18, 2012

St George

I have been craving sunshine for months now! We were lucky enough to head down to the George house (as Calder has named it) and enjoy the rays. It was so nice! The last day was overcast but we had three sunshine filled days full of walks and feeling the warmth on our faces. I could live there!
Right after we took the picture above Quinn put Lila in her stroller and ran through the fountain, of course I yelled at him to get out but Lila had a huge smile on her face.
These little legs were bare the whole time, just on the last day was it a bit cool. We loved the sunshine.
These GORGEOUS blossoms were on the tree in my moms backyard, I can't wait for spring

Quinn's parents were down in Vegas for meetings so we met up with them.
We met Robyn at their hotel and sat by the pool till Todd was done with meetings. It was pretty windy but Lila loved it. She kept laughing and kicking her legs. She adores the wind.
The Gardens at the Bellagio (I know I always post about them, but I adore them! And really what else is there for a Mormon mommy to do in Vegas?) had a Holland theme with thousands of tulips! How incredibly perfect!
Enjoying Holland! like always......

So this Pic is out of order, blogger just can't seem to load right for me, but I love this one of Lila. She loved her new ride and car seat. She fell asleep several times on the drives to and fro. She kept sticking her little arm in the side and raising her hand. Quinn kept saying, "yes Lila? you have a question?"

lots of quality time

These past 19 months Lila and I have spent a lot of quality time in doctors offices and hospitals. Sherilyn took this picture of us at the eye doctors. I love these moments with Lila. She is always so patient. She teaches me a lot about "enduring well".

Lila's First Sleepover!

you can see evie's giraffe picture she drew for Lila in this one. so sweet

Here are some pics from when Lila spent the night at Kelli's house. I know she had so much fun with her cousins and Aunt and Uncle. She get so much attention and loves to chat with them. Thanks again!!

Monday, March 12, 2012

Actually there are only 20......

We were contacted by the UK docs yesterday. They wanted to let us know they have submitted the manuscript for publication. Although who knows how long it will actually take.....
He also wanted to let us know that he saw I mentioned that there were about 50 Vici children in the world, he had only been aware of around 20. TWENTY!!!!!!! He would know better than me. Its hard to not feel a bit lonely having one of twenty in the world. We wished we know some more kiddos like Lila.

a new article

Nikki sent me this article today. It's funny how special needs parents can feel so alone and then have the exact same experiences. I relate to every word of this article. I love you special needs moms and Dads!

Maria Lin


About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

My 3-year-old son Jacob is one of them.

He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.


Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.

Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

Sunday, March 11, 2012

7 years!!!

It was our seven year wedding anniversary on Saturday. We had an amazing weekend. Kelli and her family were so sweet to take the little one over night and so we spent our first night away from little miss. It was weird not having my constant companion with me but I knew she was having so much fun with her cousins. Thank you so much Kelli!! Quinn and I needed to take a break from doctors, researchers and waiting and just relax.
We went and got lunch and massages down at the Gateway and then checked into the Grand America for the night. That is where we had our wedding reception.
The view from our room
I remember walking around that courtyard in my dress taking pictures.

We snuck into the grand ballroom where we had our reception. It was fun to remember that day.

Getting all fancy for our dinner out.

Happy seven years Quinn!! Thanks for a wonderful adventure. I couldn't do this with anyone else. I love you.

Kelli-Thanks again for watching the little one. It was nice to regroup and take a moment. Thank you!
Marissa- Thanks for pup-sitting Cubbie

Wednesday, March 7, 2012

Happy Birthday Eliza!!!!

Our dear friend Eliza turned seven this week. We got to go to her birthday party and celebrate this huge milestone. We love this little girl so much!
This is right after Lila went jumping with her daddy. She had big eyes for a while. It was sensory overload for a bit.
We got a few smiles after this jump session.
She gave her daddy kisses after.

Do you ever get out and realize that you have dressed your kids in the exact same color scheme?

Thanks Eliza for a wonderful night! We love you sweetie.


Lila loves to get her teeth brushed. She laughs out loud when we do it. Its hilarious.


Our cute old vision therapist stopped by to say hello and to drop off all these goodies. We sure do miss her! USDB made a big mistake letting her go. I think she is incredible!