Time Flies

She is younger than Abby's age in this photo. Now she's 8 and saying things like "big whoop" when her dad tells her he smiled at her. Even though I miss her at this age, she is the best big sister and helper-ever.

Look at my Down syndrome baby. Love. Now, she's almost 6(not potty trained yet) but proving day after day that she is "More Alike Than Different".

This picture will be 4 years old on Sunday. My baby will be 4 on Sunday. Where did that time go? I guess we've been pretty distracted by the funny things she is always doing.

Lately, I've been thinking a lot about how fast time flies. These thoughts suddenly began after I drove by a neighbors house, I was captivated by what I saw. It was a perfect fall morning and a mom and son were sitting on the driveway, drawing with sidewalk chalk. It stopped me right in my tracks. It looked like one of those perfect moments you want to relive over and over. You know-like curling up with a good book, a blanket and a cup of hot cocoa. The simple moments in life always seem to be the best moments.

I think I need to have more simple moments with my girls before I blink and they aren't possible anymore.....

Heartstring Emotion

There are so many moments in life that will pull our heartstrings and waken our senses. Good times, scary times, happy times, sad times, tragic times, hard times, special times. These are the moments I find myself pondering as I look back in my life. I find it fascinating that somehow my mind looks back on most of these moments with a sense of nostalgia. Why is it that even the sad and hard times leave me almost yearning to go back? Maybe because even the hardest times turn out to be bittersweet.

The fall season has always been one of my favorite times of year, I think it triggers a sense of nostalgia in most. The changing color and falling of leaves along with spicy candles, pumpkin and apple goodness is bound to produce warm and fuzzy feelings from past times. Since Emma was born in the fall, naturally, the resulting emotion and feelings I experience now are quite different from before. At times I find myself yearning to go back to an easier time, when I was just a wife and mom-normal. At times I find myself yearning to go back to a time when 95% of my focus was on Madison. I think the oldest child will always go through change when siblings are born, but hers was intense and has never stopped. It's impossible to describe the way that pulls on my heartstrings. Sometimes, I relive the special moments of when Emma was born through this time of year. We had such amazing support from family and friends while Emma was in the NICU. The visits, letters, phone calls, and help are memories I hold very near and dear to my heart. Jeff and I were puddles on the floor as we faced losing a child in addition to a surprise diagnosis of Down syndrome. We were literally carried through by the support from others and it has lived on to this very day. We've received presents and care packages, a lot from complete strangers. Wonderful people have cleaned our home and brought us meals. Selfless people have helped ease the financial burden we face. Not only through Emma's benefit fair, but also through anonymous donors. The support we receive is leaving impressions on our heartstrings so deep and powerful. I know I will never forget. We all live in a world that can be so depressing, I almost can't watch the news. I feel fortunate to be reminded, constantly, that there are good and amazing people in this world.

I recently found out about an International Down syndrome orphan ministry called Reece's Rainbow, my friend is adopting a little girl through them. Talk about heartstrings. I have spent some time visiting their website and learned so much. Did you know that orphaned children, born with Ds, in other countries are considered outcasts with no ability to learn or be functional members of society? MY HEART, it broke when I read that. Reece's Rainbow also has a sponsorship program where, if you are not in a position to adopt, you can donate money and help a family with their international adoption. After reading about the children waiting to be in a family, I really lost it for a minute. If I could, I would bring them all home with me. Even after everything that we've been through and the enormous impact Emma has on our family. It is amazing, all of it. Like I said, even the hardest of times are bittersweet. Maybe someday, we'll bring one of those angels home with us.

Tomorrow is a day I have been looking forward to since July. I had the privilege of participating in a movie screening at the National Down Syndrome Convention. I watched a documentary film titled "Monica and David", it won best documentary at the Tribeca Film Festival. The film was amazing and left such an impression on me, I laughed and cried through most of the film. Some moments were especially touching for me, some were upsetting. HBO is broadcasting the world debut tomorrow as part of Down syndrome awareness month. This film is full of heartstring emotion. Watch it, seriously.

Inspiration

It's interesting to me that we receive inspiration from weird/wacky things sometimes, but we do. We have a saying here at our house that honestly makes me feel better at times. In a strange/weird way it validates the toll some of the differences in our life can take on us. Inspiration for this comes from the famous(or is it infamous?) line "You might be a redneck if____". We periodically find ourselves saying this from time to time as situations pop up. For example, one day I was working with Emma on therapy at home. I was trying to come up with different ways to strengthen her hand coordination and decided on teaching her how to turn a doorknob. Her therapists are always telling me to incorporate therapy into every day life. Afterward, I said to Jeff "you know you're daughter's in therapy when you teach her how to open a door". Most of the time, we mothers, wish our kids never learned how to open a door, especially when it just leads to more chaos!

Over time, it's evolved to: you know you have a child with special needs when______. We've had some funny ones come up over the years that were the perfect distraction for the spot in our hearts that always hurts a little bit. Sometimes, it's funny to realize the things we do because we have a child with special needs and sometimes it just hurts. Like tonight, I said it again to Jeff. If you know Emma, you know that she DOES NOT go to sleep well. She never has, and usually Jeff and I take turns lying down next to her to help her fall asleep. This is not an easy task the majority of the time, if we can get her to hold still long enough she will finally fall asleep. Let's just say that sometimes we have to pin her legs down with our legs and wrap our arms around her to keep her from moving her arms. I've decided that I could wrestle a great match after all the practice night after night trying to help Emma fall asleep. However, this past week, she will just lie down in random spots and go to sleep, before bedtime even. It's weird and uncharacteristic of her and after a couple of times I started thinking "hmmmm". It happened again tonight and I was actually starting to think of possible scenarios that could be the root of this change in her. So my comment to Jeff was "you know you have a child with special needs when you worry after they fall asleep all on their own". I really have no clue if other parents, in our shoes, deal with sleep issues. But, we do and this is abnormal behavior for her.

When there is a mile long list of "what if's" it's really hard to keep my mind from going there. Will this more than likely be nothing? Probably, but there is always a chance of something being wrong. That is painful to accept as a parent, no matter how much you love them-more so because you love them. "You know you have a child with special needs when you understand the pain I'm talking about".

Want to be Emma's Buddy?

Well, it's that time of year again-Buddy Walk time. Did you know that October is Down syndrome Awareness month? It usually kicks off the end of September when Buddy Walks start all across the country. There will be special opportunities throughout the country to learn about Down syndrome and to promote acceptance and inclusion of individuals born with this genetic condition. More importantly, it's a time to raise awareness of the potential these individuals have. When Emma was a newborn, her potential was sad to think about, mostly due to my innocent ignorance. I remember walking around a toy store, when she was 2 months old, wondering if she would even be able to play with the many toys that surrounded me. Looking back now, I want to laugh at how completely clueless I really was. She runs and plays like both of her sisters. She knows what she wants, trust me, there is no stopping her.

I only know the truth now because I have the privilege of spending every day with her. My eyes were opened even more to her potential, when I attended the National Down Syndrome Convention this summer. It was an amazing experience and I feel lucky to have attended. There were several self-advocates(born with Ds)who spoke. They spoke about their travels, adventures, jobs and their apartments that they lived in on their own. I walked away saying to myself "I'm really not going to put a cap on her growth now, she can do anything". She can do anything as long as I know that she can and as long as others around her in the community know she can. If she wants to work when she grows up, it more than likely won't be a possibility if the workforce has no idea of her true potential.

I met a family at the convention that told me a story about their adult son, born with Down syndrome. His father dropped him off for a job interview one day and was pleased to hear later that day that his son had been hired. He had been going to work every day for 2 weeks , when the father stopped in to visit his son, realizing quickly his son was nowhere to be found. He found him, much to his surprise, across the street working at another store. He learned that his son had gone across the street and asked for a job because he wanted to work there instead and the owner had hired him on the spot. Two things really stood out to me as I listened to their story 1. children, young adults, and adults born with Ds know what they want-just like we do and 2. I was so touched and impressed with the owner of the store that hired their son. The story proves how powerful acceptance of individuals born with Ds can be. I'm amazed that he not only recognized him as an adult, but also treated him like one. Most of the time, finding jobs for individuals born with Ds can be quite the production with social workers, hard work on the parents end, etc. I wonder if the owner of that store will ever know the difference he made in that man's life. This is just one aspect of awareness that needs to spread, I could go on and on.

The question is what can you do to help? You can find a Buddy Walk to participate in at buddywalk.org or make an online donation at Emma's fundraising page for the Utah Down Syndrome Foundation by going to www.firstgiving.com/d-squared. The funds we are helping to raise will help improve the lives of individuals born with Ds. We ask for your support in making a difference in not only Emma's life, but all individuals born with Ds. We are almost half way to our fundraising goal, if 100 people donate $5-we'll make our goal. We would love to even double or triple our goal, something that could easily be a possibility if all of you help spread the word about her page. Our theme for this year's walk is "More Alike Than Different". Post this logo on your blog and help us spread awareness.

Quick Update

So Em seems to be fine, well relatively fine. I don't really know what exactly was going on Thursday night since I didn't take her in to get checked out, I'm guessing it was just asthma and feeling sick from her high blood sugar. Yesterday, after the long night, she woke up with a cold. I knew something was coming. She had a lot of red flags, but never got a fever and woke up acting like Emma not "sick" Emma. She only threw up the one time, so I know I can rule out the stomach bug(that requires enormous amounts of zofran to get under control). Pneumonia can be put back up on the forbidden shelf. The only cruel part is that ding dang diabetes makes her just as sick sometimes.

Tonight

Tonight, I should be writing about the happenings and adventures our family has been up to. Like the tree incident(long story) and spring break fun. But, tonight, I'm on a mission to write instead of feeling sorry for myself. It's been one of those days today. The kind that makes it to hard breathe. I kept Em home from school today, her asthma symptoms concerned me enough to keep an eye on her. The air environment has not been good for her asthma, we have some inflammation going on. She wasn't too sick, which meant I was in for a long day. The typical draining behavior was around, but for some reason it seemed to drain me more than usual. I was not the most patient mother.

Tonight, my mom called to check up on me and the tears that built up all day were starting to give my emotions away. She came to my rescue by taking me out for some dessert. I was feeling better, the suffocating feeling was going away. My hopes of starting over with a brand new day were soon smashed when Jeff told me Emma had thrown up while I was gone. If I could only explain the journey this kind of news takes my brain on. There can be so many reasons behind this with Em, most could easily land her in the hospital. Right now, my biggest concern is pneumonia. We recently caught an early onset in her, so recurrence is always a concern. She's had the flare up with her asthma the last 2 weeks which sometimes predisposes her to pneumonia. She also had a wacky diabetes day 2 days ago which can be a "sign" that something is coming. It could also be nothing but a stomach bug, still that can be scary with the diabetes and her nissen. Her very high blood sugar could also be the culprit, time will tell.

Tonight, I'm rolling in guilt. I keep snuggling up to her, whispering sorry. Sorry that I wasn't stronger today, you must have felt crappy all day. Nights like tonight are when it can get really hard. The traumatized part of my brain switches on like a light switch. The emotional roller coaster it takes me on, combined with the reality that it is really draining taking care of her all day long, results in a lot of emotional vomit that will require lots of tissue and sniffling.

Tonight has turned into tomorrow. Constantly adjusting Em's sleeping positions for better air movement, tickling her back when she seems restless, giving her a breathing treatment, checking her blood sugar and oxygen sats, and changing her pump site means it's taken me hours to write this. I'm probably not going to sleep much.

Tonight I'm reminded again of how precious she is to me and it makes all the drama seem insignificant.

World Down syndrome day

3-21 is World Down syndrome day! Down syndrome is also known as trisomy 21, because there are 3 copies of the 21st chromosome. Check out more info here. In honor of Emma, here are 21 things we love about her:

1. Her laugh
2. Her stubby fingers
3. Her ears
4. Her belly
5. The way she eats ice cream
6. The way she says "I love it"
7. Her plop
8. The way she loves to dance
9. Her epicanthal folds
10. The way she signs I love you
11. Her pidgeon toed walk
12. The gaps between her toes
13. Her kisses
14. How she always gives herself wedgies on purpose
15. How she acts out movies, scene for scene, when we watch them
16. Her sleeping positions
17. Her perseverance
18. Her wave
19. Her run
20. Her lips
21. How she never gets sick of chicken nuggets