Willing

Madelyn had her Physical Therapy, Occupational Therapy, and Speech Therapy appointments at Wesley this week. It was a long day for her. We started at 2:30 and didn't leave until 4:45. She is doing pretty well- her OT and SLP want to see her in a month. Her PT wants to see her weekly for awhile to work on strengthening her neck muscles. Her right side is weaker and she often leans her head to the left when sitting up. I never even noticed this before. We have some stretches and exercies to work on at home. During OT, she worked on reaching for a toy and bringing both hands together to hold a toy. She was able to reach for the toy and grab it with both hands, but it was uncoordinated. It was fun to watch her work (play) during therapy. When Madelyn is thinking really hard she will pucker her lips- it is so cute! Her SLP gave us a few things to do to help with feeding. I don't have any experience with feeding, so I thought it would be good to have another SLP give us some help with that. Yesterday, I spent some time making a list of all the things we need to work on that we have learned from the therapists at Wesley and Rainbows. It is a long list- filling up 1 1/2 pages. I felt overwhelmed today looking at it. I started stressing about all the things we have to get in- in such a short amount of time. I wished that I could just play with Maddie and snuggle and not stress and worry about getting everything in. So I just might put away the list for a few days... While we were waiting for Madelyn's therapy appointments, we met a couple of moms there with their kids. One actually goes to our church and has two children with special needs. She made the comment that God gives children with special needs to special parents. I don't feel "special" or believe that God chose Richard and I because we are amazing people. Another mother of a baby with Down syndrome once made the comment that God didn't give her a baby with Down syndrome because she was "special" but because she needed to be fixed. I know that Madelyn has a lot to teach us- I am learning to be more patient, to take one day at a time, to celebrate the small things. I have learned more about acceptance and unconditional love in the last few months than I did in the last 27 years. It's always been hard for me to stand up for myself and to correct others. I also let people walk all over me sometimes because I can be too nice. I know that along this journey, being Madelyn's mom will require me to change- to be more assertive to get her services she needs, to educate others when they say things that are offensive, and to stand up for her. I know it will be a change for the better, and I think that God sent her to "fix" me- probably in more ways than I will ever know. She has already brought more love and joy into my life than I could ever have imagined. I read a quote the other day that sums up my thoughts about being a parent of a baby with special needs- "God does not call the qualified; He calls the willing and then He qualifies them." I am so blessed to have her in my life. I ask Richard all the time- How did we get so lucky to have the cutest baby EVER?! We have started teaching Maddie sign language- After watching this video, we noticed she did some signing! Here she is signing "eat" after Richard says "eat" and then she signs "mommy" after Richard says "mamama"- she spreads her fingers and brings her hand up to her chin.. we think she did it on purpose!

Smiles

Madelyn started smiling almost 2 months ago- when she was around 11 weeks old. I am lucky to see her smile two or three times in a day, but today she was smiling a lot! It made me so happy to see her face light up over something her daddy or I did. I even caught some smiles on camera.




Madelyn turned 4 months a week ago. At her 4 month appointment she got a bunch of shots and cried of course. She weighed 11 1/2 pounds and was almost 24 inches long. On the Down syndrome growth charts, she is in the 65%ile for weight and 75%ile for height! She definitely has some rolls on her legs. This week she started eating baby food. Today she ate 26oz of formula, some rice cereal, and some green bean baby food. That is a lot for her, since she has been eating around 22 oz for the last few weeks. I don't think she likes green beans so we are trying some fruit tomorrow.



We bought Madelyn an exercise ball to work on improving her muscle strength. Here she is doing some Physical Therapy exercises.

Buddy Walk 2010

Yesterday our family attended our first Buddy Walk! It is an event to raise awareness of Down syndrome and raises money for the Down Syndrome Society of Wichita. Madelyn's team, Maddie's Marchers, had about 35 people and raised over $700. It was a fun morning, and I even won a raffle basket! The walk itself was 1 mile around the Heartspring campus. Then we had lunch and the kids played games. Maddie slept for about half of the event, but I think she still had fun. It was neat to see so many people with Down syndrome and their families. It was great how everyone is so supportive of these individuals and how much joy they bring to the lives of everyone around them.

What is Down syndrome?

Down syndrome is also known as Trisomy 21, because there is an extra copy of the chromosome 21. People with Down syndrome have 47 chromosomes, compared with the typical 46. At the time of Madelyn's diagnosis, the genetic counselor said that the extra copy of chromosome 21 was a random event that occured at some point when Richard or I was conceived. I don't believe Madelyn's Down syndrome was a random event- but part of God's plan.

Typically, children with Down syndrome will meet all of their developmental milestones, but at a slower rate than other children. People with Down syndromes can lead fulfilling lives. Many are included in regular education classes, some live independently, hold jobs, and even get married.

I see pictures of cute babies with Down syndrome all the time, but I have to say Madelyn is the cutest.

31 for 21

October is Down syndrome awareness month. I read that some people are doing "31 for 21" on their blogs- making a blog post about Down syndrome (Trisomy 21) each day in the month of October. So I thought I'd try it- although I am already starting late and probably won't have time to blog every day! So it might be more like 21 for 21.. or less. I thought I would post an essay written by a mother of a child with Down syndrome. It is called "Welcome to Holland" and talks about what it is like to have a child with special needs.

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

I will leave you with some pictures of the cutest baby I have ever seen.. Madelyn!


Hanging out


Madelyn and daddy


Talking to mommy in the morning.