50 things I am thankful for...

I have so much to be thankful for this year, here are just a few ;-). Keep in mind these are in no particular order.

1. First and foremost, Charlotte's repaired heart.
2. My husband. See my post from November 9th. He is fantastic. 
3. The way Will still holds my thumb for comfort and is the most affectionate 3 year-old one could ask for.
4.  My spunky, bright, red-headed daughter who keeps me on my toes.
5. Chocolate. What can I say, I am a stress eater...and this year has been stressful.
6. Missy. She gets me. 'Nough said. 
7. Charlotte's smiles. They light up a room and bring tears to my eyes. 
8. My mom for baby-sitting just about every Saturday night from the time Charlotte was born until now, in order for Mike and I to have time for "us" during the an extremely stressful time.
9. My kickboxing instructor (Kate) who tries her darnest to counteract the effects of my chocolate habit.
10. Mike's job, which allows me to stay home with our children. 
11. My dad for taking Will (and Katherine) to nature classes every month. They love spending time with their Papa. 
12. St. John's preschool for providing a caring and structured learning environment for Katherine and Will. Their five teachers are fantastic and were particularly wonderful before, during, and after Charlotte's surgery. 
13. Children's hospital for providing outstanding care for Charlotte.
14. Every single person who has prayed for Charlotte during the past 6 months. 
15. My playgroup for providing me moral support and help with my children.
16. My little brother Paul, who the day after Charlotte's Down syndrome diagnosis called to tell me that "people with special needs bring out the best in everyone, and Charlotte will do that for our family." That statement still resonates with me almost 6 months later.
17. Kate and Bill for throwing Katherine and Will a grand birthday party weeks before Charlotte's surgery--it was exactly what we all needed. 
18. My in-laws, who despite the distance, have done everything in their power to make life a little bit easier for Mike and I. 
19. The bond that Katherine and Will have formed with their little sister. I hope this continues forever. 
20. The fact that despite her heart defect, Charlotte was relatively healthy for the four months before her surgery.
21. For Will's ability to make me smile every time I ask him a question and he responds "great."
22. My friend Sarah Halon, who I see so infrequently, yet I feel so close to.
23. For Charlotte's fantastic sleeping habits. 
24. My sister-in-law Erin, who I can bounce my PT questions off of...
25. Andrew and Christine for taking Katherine many overnights this year. 
26. Each person who came to Katherine and Will's birthday party and still haven't received thank yous because they are sitting on my kitchen counter (two months later). I promise you'll get them soon. 
27. My mom and Kate for cleaning my house and filling my fridge the day Charlotte came home for the hospital.
28. For the friends and family as well as perfect strangers who made meals for us and/or send cards/gift cards during and after Charlotte's surgery. 
29. For Charlotte being born during a time when those with special needs are for the most part accepted into society...this doesn't mean we won't have to advocate for her, but it is so much better than it was 20 years ago. 
30. Sammy for making me smile every Tuesday, Wednesday, and Thursday. Alright!
31. My tutoring clients who have stuck with me the past few months, most the past 4 years! 
32. Facebook (I know, I know...nuts, right?) for keeping me in contact with so many people! 
33. Charlotte's ability to breastfeed despite what all the "medical professionals" told me after she was born. She is a rockstar.
34. My children for reminding me what it is like to be a kid. 
35. Missy, my mom, and Kate for rearranging their lives to watch Katherine and Will during Charlotte's bizillion doctor's appointments. 
36. My neighbor Melissa for the moral support. It is so nice to have someone who, though our situations are different, does truly understands what I am going through. 
37. Every person who has left a comment on here, sent me an email, or left me a facebook message. I can't tell you how much they have helped! 
38. The patience and understanding from family and friends each time I fail to return a phone call, send an email, or forget a birthday. I promise this will get better in the months to come.
39. Those who donated blood in honor of Charlotte, as well as those who raised money and walked as a part of Charlotte's web.
40. The Baby Center Community "Down syndrome" message board and "Babies/Children with heart problems" message board...I have learned so much from other parents going through the exact same thing.
41. Charlotte's complaining. She doesn't cry often, just complains. I love it. 
42. Everyone who tells me what Charlotte can do, not what she can't.
43. Tuesday afternoons watching DWTS with Katherine. She is quite the dancer. 
44. Dr. Tweddell for fixing Charlotte's heart.
45. Health insurance. 'Nough said.
46. Every person who went and went online and researched Down syndrome, read a book or an article, or made an effort to understand what we were/are going through. This means so much to us. 
47. McDonald's 49 cent ice cream cones. They aren't chocolate, but what a great, cheap treat! 
48. Coffee Wednesdays. I look forward to it every week. ;-)
49. Lazy weekend mornings; drinking coffee with my husband, eating pancakes with my kids, and nursing my baby....just being normal, since for so long nothing seemed normal.
50. For you. The person reading this. Thank you, thank you, thank you. 

So, in a nutshell, I am pretty dang lucky. My family, my friends, my health, my children's health...so much to be thankful for this year...

I leave you with a little glimpse of what makes me smile every night.

 

Happy Thanksgiving!

My litte roller.....

I went in the kitchen to make lunch yesterday and left Charlotte playing on the floor. I came back 5 minutes later and this is what I found....

Answering the taboo questions...

 You know those questions that everyone wants to know the answer to, but no one wants to ask? I've answered them below.

Question #1: Are you an older mom?
Charlotte came into this world one day after my 30th birthday. Is 30 considered old? I hope not. In reality, 80% of babies with Down syndrome are born to women under the age of 35. It is true that the odds of having a child with Down syndrome increases with age, however more children are born each year to women under 35, therefore increasing the number of babies born with Down syndrome. At age 30 our odds were 1 in about 900.

Question #2: How did you not find out about the Down syndrome before she was born?
We chose not to have the quad screen done early in my pregnancy for a few different reasons; first, I wasn't high risk due to my age and previous pregnancies; second, there is a very high incident of false positives on those types of screenings; and third, it would not have made a difference one way or the other. Mike and I would have accepted and loved any child we had and would not have chosen any other option if we had found our prenatally. It is amazing to me that the termination rate for Down syndrome is 90%, something I can't understand, though that is another blog post.

I did have a 20-week routine ultrasound, and no markers for Down syndrome were found. Charlotte's heart at that time looked healthy. We later found out from our cardiologist that about 50% of AV canals are not found until after the baby is born. At that ultrasound we did find that Charlotte had a twin, and the fetus had stopped developing at 14.5 weeks (talk about a shock!). However, there was nothing that gave any indication of things to come.


Question #3: How did nobody realize Charlotte had Down syndrome until the day after her birth?
 I remember calling Missy after talking to the pediatrician and telling her that they thought Charlotte had Down syndrome. She was in complete shock...she said she had stared at Charlotte for the longest time the day before and had not even a little inkling or feeling that she may have Down syndrome. After Charlotte's birth, like many babies, she was a little swollen. That, coupled with the fact that she had a hat on the majority of the time hiding her ears and neck (her two most prominent features that point to Down syndrome) made it difficult for anyone to suspect anything. Though, as soon as the pediatrician said the words to us, I knew it was true and never questioned it, even though it was a few weeks until we had proof through a blood test.


Question #4: Does this increase your risk of having another baby with Down syndrome? 
The type of Down syndrome Charlotte has (trisomy 21) is not genetic. There are three types of Down syndrome; one of the types can be genetic, but most are purely just a fluke. Some say that are odds of having another child with Down syndrome is 1 in 100 just because it has been shown to have occurred before. However, the geneticist we saw said that our chance of having another child with Down syndrome is the same as any other couple our age. Many ask if we are going to have any more children; the simple answer to that? At this time we have a 5 year-old drama queen, a son in the midst of the "trying 3's", and a baby who just had open-heart surgery...what do you think?


There are more questions, I am sure, but right now I am off to deal with my spunky 5-month old that no longer naps....makes for some long days!  Have a good weekend everyone!

4 weeks ago today...

Four weeks ago today, Charlotte had her open heart surgery. It is still AMAZING to me how fast she has healed. She is back to log-rolling across the family room, pushing up on her arms, and even trying to get her knees up under her. The only difference in her today from 4 weeks ago is the scar that runs down her chest, and even that looks pretty dang good. Check it out.

For those wondering, she didn't have any external stitches or staples. They used dissolvable stitches on the inner layers, then glue and steri strips on the outside. Her last strip fell off a few days ago, and pretty soon we will be able to give her a regular bath again. The little scar underneath the big one is from one of her chest tubes (the other one was on her side). Katherine thought her incision looked like a zipper with the steri strips on, so she now informs everyone that her baby sister has a zipper. Pretty amazing.

Charlotte's Daddy

I am married to a wonderful man. I know that sounds cliche, but I really can not imagine going through the past 5 months without him by my side. I am blessed to have such a supportive partner, and my children are blessed to have such a caring, involved father.

Mike is a hands on father; never questions me when I want to go out and leave him with the kids. After working long days, 2-3 nights a week he walks in the door as I walk out the door to tutor. He bathes the kids, changes diapers, plays board games, reads bedtime stories and all those other things that makes a father a "daddy."

Mike's calm and patient demeanor is a perfect balance for my anxious, sometimes uptight personality. We are truly opposites, but in a good way.

Mike never faltered after Charlotte's diagnosis. Two days after she was born, he very simply said "We raise her just like we raise the older two kids. We are so lucky to have 3 children, there are a lot of people out there that can't have kids." Charlotte is lucky to have such a fantastic daddy, who will always be there for her.

Today, on Mike's 31st birthday, I want to thank him for being the husband and daddy he is and wish him a happy birthday! Love you babe.

Daddy's girls

Will with his dad

Good Friday Morning!!

Check out Charlotte's head control :-)! Her PT was impressed!

Holland

After Charlotte's Down syndrome diagnosis, I frantically searched the web for information. One poem I came across frequently was "Welcome to Holland" by Emily Perl Kingsley. The author uses a metaphor for describing raising a child with special needs. The first time I read it, it was vaguely familiar to me. After racking my brain, I finally connected the poem to a song I had heard a few years before at a concert. David Roth, a folk singer and good friend of my parents, had written a song based on the metaphor in the poem. At the time, I had no idea the song was a metaphor; I just thought it was a nice song about visiting another country. Hah! In my defense, I was young and I am a pretty concrete thinker! I also had never looked at the printed lyrics, just listened. Below are the lyrics, however I urge you to download the actual song from iTunes. Hearing it makes a bigger impact :-).

HOLLAND © 1997 David Roth 

We planned a trip to Italy, we got so darned excited
We bought a bunch of guidebooks and we learned a phrase or two
We packed our bags and off we went, directly for the airport
As prepared as we could be for something altogether new
We’d mapped out all the prime locations, Rome, Milan, and Florence
We connected with our agent about nine months in advance
We knew this trip would change our lives,
We went to classes, husbands, wives
We didn’t want to leave one thing to chance
But when we landed we were in Holland
Italy is what we had in mind
This was not what we’d come all this way to find
We couldn’t change it, we got our baggage
And we began a trip we never in a million years
Could have imagined
We got our footing quickly though, there wasn’t time to take things slow
We got some brand new guidebooks and we learned a whole new language
We met people who we never knew, existing here in Holland
Reluctant as we were with all these unexpected changes
Nowadays we still see everybody all around us
Busy coming and going off to Italy as planned
They’re all bragging what a great time
And they pass around their pictures
We smile and say “your trip sounds very grand”
And when we’re honest we’re exhausted
As we walk the streets of now-familiar towns
A different dream is what we’ve landed here and found
But we have tulips, we have Rembrandts
And we remember that not everyone will know
Such different kinds of beauty

I prefer the song over the poem for a couple reasons. The first, at the end of the poem the author states the pain of the loss of the dream I had for my child will never, ever go away. Maybe I am being idealistic in my thinking, but I do hope that one day I will no longer feel that pain. I have said before, and remind myself often, that I am mourning a loss of a dream, however it was my dream, not Charlotte's. I look forward to discovering Charlotte's hopes and dreams. I prefer the end of the song, which focuses on the beauty of the differences we will get to experience.

The second  reason is words, for me, seem to make more of an impact when in a song and put to music. Already, I have found comfort in this song and have listened to it probably a hundred times in the past few months. One warm summer night in July, after a particularly bad day, I left Mike to put the kids to bed, strapped on my iPod and spent 45 minutes jogging/walking around the subdivision listening to this song on repeat, crying of course. Sometimes a good cry can really help one's frame of mind.

"Holland" by David Roth is on his Irreconcilable Similarities album. Along with "Holland", I also enjoy  "A Little Something More," a song about a young man with Down syndrome. http://www.davidrothmusic.com/index.html

Crazy weekend!

We had a fun-filled, crazy Halloween weekend. We spent the time with family and friends at various Halloween celebrations. The kids all had a blast; though we are still trying to catch up on sleep.

Charlotte continues to do really well. She has been sleeping a little bit better at night, and her usual happy self during the day. She rocked her orange tutu and polka dot tights this past weekend.

Firefighter Will

Pumpkin Girl

Princess Peach

Mario and Princess Peach

And even though this picture isn't from Halloween, I wanted to share it!