Friday, June 29, 2007

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

I am a contributor to a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Gifts is a candid and poignant collection of personal stories from 63 mothers who describe the gifts of respect, strength, delight, perspective and love, which their child with Down syndrome has brought into their lives. This book is available now at Barnes and Noble, or can be purchased online here.

Here is my story (this was written when Payton was seven months old) ...

Ups and Downs
by Bethany Balsis

HOURS AFTER PAYTON was born, four doctors walked into my hospital room, one after another, with somber looks on their faces. I already knew in my heart that our baby girl had Down syndrome. Deep down, I was still hoping that I was wrong, but they confirmed my worst fears. Then they quietly filed out of the room. As soon as the heavy, metal door closed behind them, my husband and I looked at each other and began sobbing. Then the questions began.

What are we going to do with a child with Down syndrome?
What kind of life capacity is she going to have?
What are we going to do financially?
Will she be able to go to daycare so that we can both continue to work?

We continued talking and crying and worrying, with all of our questions boiling down to one: What will life be like for our daughter, and for us?

That was the beginning of the roller coaster of emotions that we experienced over the next several weeks. It seemed that our new reality was a ride of happiness and sadness, hope and fear—a ride that we could not control.

About an hour after we met with the doctors, some of our family came to visit. Through tears, we told them of the doctors’ suspicions. “I’m sorry,” they said. Even though we were devastated, we did not want people feeling sorry for us. At the same time, it felt weird for people to say, “Congratulations!” I thought to myself, Congratulations for what? Congratulations for having a baby that is in the NICU? Congratulations for having a baby that has Down syndrome? Nobody asks for their child to be born with Down syndrome, so why would anyone congratulate me for that?

While I knew that they were simply congratulating us on the birth of our beautiful little girl, it was hard for me to swallow their comments. I felt as though they were tiptoeing around her diagnosis, which obviously had thrown everyone for a loop. I understood that these sorts of situations were hard and had I been in their shoes, I probably would not have known what to say myself. Still, nothing seemed to make me happy. And at the same time, I was ashamed at my feelings of sorrow. Why was I drowning myself in tears over her diagnosis, when Payton was in the NICU, hooked up to what seemed like hundreds of wires and monitors, fighting for life?

Later that evening, while my sister was visiting, we were doing some research online on our laptop computer. My husband ended up on the Special Olympics website. “Payton is going to be the best bocce ball player in the Special Olympics!” he announced. I said, “No, she is going to be the prettiest cheerleader in the Special Olympics!”

In hindsight, I realize that was our way of coping. We had quickly become determined to make Payton’s life the best it could be. My sister later told me that our attitudes surrounding the situation helped her to cope. She said that as long as we were okay with everything, she was too. This made us realize that people were going to follow our lead regarding Payton’s diagnosis. If our attitude was positive, others would be more likely to feel the same way, and that would make the world a better place for our daughter.

In the days that followed, I would sit and stare at my beautiful baby girl while she slept so peacefully in her isolette. Despite my hope for her future, a million worries continued to run through my head. How would other people react to her? Would she be stared at or teased? Would she have friends? My fears continued to churn in my stomach. I knew she would be okay as long as I was there to defend her, but I also knew that she would eventually have to blossom into her own being, and that scared me.

Prior to my discharge from the hospital, an unfamiliar nurse knocked on my door. She came into my room and sat next to me. There were tears rolling down her cheeks, but she had a sense of peace about her. “I’ve been in your shoes,” she said. I looked at her intently, anxious to hear what she was going to say next. She said that years ago, her oldest son spent some time in the NICU at birth, due to a severe heart defect. Finally, I thought to myself, someone that truly understands the emptiness that we felt at not being able to have our baby by our bedside to bond with.

Smiling through her tears, the nurse went on to tell us about her friend’s daughter who has Down syndrome. This girl was in love with life, she said. This girl had sleepovers with her friends, and they would run around giggling about boys. Imagining this future for our daughter brought us incredible relief. We were starting to realize that our life, and hers, could be a good one.

We spent the next several days traveling back and forth to the NICU, continuing to try to swallow what had just landed on our plate. At one point I came upon a former neighbor who knew I had been pregnant. After noticing that I was no longer pregnant, she naturally starting asking about the baby—the typical questions, like “When was she born?” and “What did you name her?” At first I didn’t mention that Payton had Down syndrome, but then I felt like I was cheating her with the answers I gave. So, in a sad sort of voice, I said, “She also has Down syndrome.” Her response was one of obvious disappointment.

After we ended our conversation, I was angry with myself. Hadn’t I already figured out that people were going to take my lead? I didn’t feel disappointed anymore about the diagnosis, so why was I pretending to be? After that encounter, I never felt obliged to tell another soul that Payton had Down syndrome. If they already knew, then that was fine. But if they did not know, then that was fine too!

A couple weeks after we were able to bring Payton home from the hospital, some of our other family members came to visit. I was sitting at the kitchen table assembling the birth announcements that I had so proudly made, when someone said to me, “You know, your lives are never going to be the same.” The tone of the statement was clearly negative. I was dumbfounded. I didn’t know what to say. Had I been living in a dream world, thinking our lives wouldn’t be different? I was confused, so I just nodded in agreement. Hours later, I was once again angry with myself for not defending our family. And just as before, I had feelings of confidence that Payton’s life was worth living, and so was ours.

My confidence grew in the days that followed. At one point, I was talking to some other parents of children with Down syndrome about my worries for the future. Those parents told me, “Kids will be kids. They get teased for wearing glasses or for what they wear or for the things that they say. A typical child has just as high a chance of being teased as Payton does. You just never know. Try not to focus on the future.” I had never thought about it that way. I felt a solid sense of peace—for a while, at least.

Payton is now seven months old. In some ways we are still on that roller coaster, although the ride does not feel as wild now. These days, we are trying to focus on doing everything we can to help Payton maximize her potential. Sometimes, the therapies and exercises and techniques can be overwhelming. Whenever I start to feel sad or scared, I find it refreshing to see my son, Mason, interact with his sister. At two years old, he is oblivious to the fact that Payton has Down syndrome. He adores her just for being herself. As he runs through the house day after day, he constantly makes quick pitstops to give Payton a kiss on the forehead and adoringly say, “Look at baby sister. Isn’t she so cute?” His love is unconditional, as is mine and my husband’s. And that love will ensure that we have more ups than we do downs.

Here is the Gifts montage ... check out that third baby!

I think she is okay ...

Payton made it through the night with no more vomiting. She did wake up a couple times, but at least she didn't vomit. Maybe she was just feeling sick from all the greasy french fries she ate at Unos earlier in the day? Oops!

Thursday, June 28, 2007

I think Payton has it now ...

So Kyle was giving Payton her bottle this evening and half way through she vomited all over. Several times. SIGH. I have a feeling she has caught Mason's flu bug. I noticed she seemed a bit fussy and lethargic earlier, but I brushed it off as her being tired after not having much of a nap. I gave her some motrin and she has already woke up once so far since she went to bed ... should be a fun night!

We met up with some of our Downsyn friends today!

Today Payton and I met up with Ann and Marlene from Downsyn. Ann, who was visiting DC from Minnesota, didn't have her son, John, with her, but she did have some of her other family. Marlene, who drove down from Pennsylvania, was with her husband and sweet Aleena. We had a great lunch with great conversation, of course!

Here we are ... the one and only picture we took! How sad is that?!

Wednesday, June 27, 2007

Payton, the water and a shiner ...

Payton loves, loves, loves the water! Be it the bathtub or the pool. I snapped these pics of her in the bathtub last night ... she would play with the water coming out of the spigot all night if I let her. She also loves to fill her bucket with water, dump it out and so on and so forth. Check out the buddha belly, oh and the shiner on her forehead too. Sigh ... let's just say she tried to go bungee jumping out of her highchair ... sigh again.

Monday, June 25, 2007

This breaks my heart...

Today I was reading an article about a mother who terminated her pregnancy knowing she was pregnant with a child that had Down syndrome. Here is an exerpt that sort of struck me, followed by a few of my thoughts, of course!

An estimated 90 percent of women who learn their babies will have Down syndrome decide to get abortions, according to research by the National Center for Biotechnology Information, which is a division of the National Institute for Health.

I can't believe this ... it makes me so angry! When I had my 20-week sonogram and was told that they couldn't identify a nasal bone, which was an indicator that my unborn child may have a chromosomal abnormality, terminating my pregnancy was NOT a thought that ever entered my mind, even with the million tears I cried! It was about me learning of this news, adapting to it and educating myself about how I could give my child the best life she could have. About a week after my sonogram and after further testing, I was told my child was perfectly fine, that she did have a nasal bone and that she did not have a chromosomal abnormality. If only I could have a talk with that doctor now! Either way, I'm glad I didn't know and that I was able to spend the last 20 weeks of my pregnancy not worrying.

Back to the topic ... I guess it breaks down to my morals and values as the reason termination never entered my mind. For that, I thank my parents and family from the deepest crevice of my heart. It boggles my mind that 90 percent of women would terminate based on a chromosomal abnormality, something that would not make their child "perfect" in their eyes. Tell me this ... if your four year old is involved in an accident that makes him or her wheelchair bound for the rest of his or her life, are you going to give that child away because he or she is no longer "perfect". Why is it any different?!

For this reason, it is so imperative that people be educated about Down syndrome. I knew nothing about it prior to having my daughter. I think I had known of one person, and that was a kid that was in the special education room at my high school. Things are so different these days and there are so many more options for kids and adults with Down syndrome. I bet a lot of people would be surprised to learn that my "developmentally delayed" child with Down syndrome has come darn close to developing within typical guidelines thus far.

Please, spread the word. Brag about the kid you know that has Down syndrome and tell everyone how well he or she is doing. Help us educate people about what is unknown to them. By doing so, you are making my daughter's life that much better and I love you for that! :)

Sunday, June 24, 2007

Dress Up Day at Daycare

A few weeks ago, daycare had what they called "Dress Up Day". They brought in a photography company to take pictures in costumes that the company provided. Apparently Mason wanted to be a fireman! This picture cracked us up! They always take the worst pictures ... they don't wash the kid's face, let alone get them to smile! Here is Mason's final result ... I didn't notice the big booger hanging out of his nose until I scanned it in a larger format ... nice. High quality, I tell ya!

Wednesday, June 20, 2007

Mason is feeling better ...

Well Mason made it through the night without needing the rubbermaid bucket, thank God! I'm not sure how well that would have worked for him. He stayed home from daycare with Daddy again today because he still has a fever, but the vomiting is gone. Here is our miserable little dude looking cute in his skivvies ...

Tuesday, June 19, 2007

Mason is sick...

Today daycare called saying that Mason didn't feel well and had a temp of 101.6 ... meaning he had to be picked up. Kyle went to get him and as soon as he pulled out of the parking lot from daycare, Mason threw up all over his car. Poor little guy. Well, poor big guy too, I suppose. Mason has never had the stomach flu and I have dreaded this day. He seemed to be doing better later this afternoon, even wanted to eat. Well, big mistake. About an hour ago, he threw up all over our couch. Ick. I ran him into the toilet and he looked up at me and said with a miserable little voice, "Mommy ... no more." Poor bub ... I hope he gets past this quick ... and that he gets through the night! I put a huge rubbermaid tub right next to his bed and told him to lean over and throw up in there if he feels sick. We'll see if he grasped that concept!

Father's Day Weekend

We spent father's day weekend in Virginia Beach with the Dennis family (Natalia, Larry, Ethan and Tristyn). We had a great time and returned to our house on Sunday night. We spent Monday at the pool and our extended family came over Monday night for a barbeque.

Friday, June 15, 2007

My conversation with Mason...

Last night around 9:45 p.m., I had just shut off the TV and was laying in bed. Mason, who of course should have been asleep, came in from his room and crawled up in my bed. He laid down next to me with his mug in my face. The conversation went something like this:

Mason: Mommy, wanna talk?
Me: Sure baby, what do you wanna talk about?
Mason: Um, school.
Me: What did you do at school today?
Mason: Played with Tyler and Alex.
Me: Did you have fun?
Mason: Yes. I played with Superman too.
Me: Superman? Wow...really?
Mason: Yes. He is strong like daddy.
Me: Yes, he is very strong.
Mason: Mommy?
Me: Yes baby.
Mason: You are my girlfriend.
Me: Oh thank you baby...I love you too.

And the conversation continued on. He is so funny. He is growing up so fast, I can't stand it. He is saying such "adult" things that crack us up every minute. His other new thing is to say, "What's up?" He will plop down on the couch next to us and say it, ever so nonchalantly, as if he were 20 years old. I can't get enough of our conversations...he is so cute!

Thursday, June 14, 2007

Payton {Pre-Toddler's Creed}

Pre-Toddler's Creed
If I want it, it's mine.
If I give it to you and change my mind later, it's mine.
If I can take it away from you, it's mine.
It it's mine, it will never belong to anybody else, no matter what.
If we are building something together, all the pieces are mine.
If it looks just like mine, it is mine.

Wednesday, June 13, 2007

One Word

Stephanie (Megan's got 47) tagged me ... now I’m it. I need to answer the following questions with just one word:

1. Where is your cell phone? dead
2. Relationship? married
3. Your hair? brown
4. Work? probation
5. Your sister? friend
6. Your favorite thing? quiet
7. Your dream last night? unsure
8. Your favorite drink? dew
9. Your dream car? unsure
10. The room you’re in? den
11. Your shoes? nine
12. Your fears? loss
13. What do you want to be in 10 years? content
14. Who did you hang out with this weekend? family
15. What are you not good at? golf
16. Muffin? poppyseed
17. One of your wish list items? equality
18. Where you grew up? Wisconsin
19. Last thing you did? typed
20. What are you wearing? clothes
21. What aren’t you wearing? shoes
22. Your pet? dog
23. Your computer? compaq
24. Your life? awesome
25. Your mood? tired
26. Missing? cell
27. What are you thinking about right now? bed
28. Your car? denali
29. Your kitchen? brown
30. Your summer? busy
31. Your favorite color? brown
32. Last time you laughed? today
33. Last time you cried? unsure
34. School? mankato
35. Love? all

To tag or not to tag ... that is the question ...
I tag the Powell family and Just a little bit of something extra!!

Monday, June 11, 2007

Our trip to the ENT

Today I took both kids to the ENT. Mason for a two-year followup to his tubes surgery, and Payton for a two-week followup to her second tubes surgery. Mason will be having his tubes removed, so we need to schedule surgery for that. Although, they couldn't tell for sure that he even had both tubes still for sure, but not sure about the other. Payton's ears are looking great after getting her second set of tubes, so let's hope this set stays in for awhile!

On another note, Mason is a child that gets excited to go to the doctor's office. It is because he likes the doctor? Uh, no. While he is at the age where he will cooperate, for the most part, he never forgets that he gets to pick a sticker out of the box after his visit. Ah, the joys of being 3...

She is almost there!

Payton took a few steps over the weekend...she is so close to being up on her feet for good! She just turned 17 months old, so she is doing very well in light of having Down syndrome. We are thrilled and just wanted to share this video of her first few steps...

Sunday, June 10, 2007

Our New Blog

So, what do you think? We got a blog-over from our friend Rebecca at Just a Little Bit of Something Extra Creations! We know the blog is a little crazy, but it is for Bubba and Chicky (yes, that is what we call the kids)...and they are, well crazy!