My Unexpected Little Blessing

The surprise of a baby with Down syndrome – the story begins at the bottom of this page.

I’m A Big Girl Now!

100_1736

I can’t believe this but my baby girl turned 8 months old yesterday. Where does the time go??? I am excited for each and every new thing that she accomplishes, but I wish time would slow down too! Speaking of new accomplishments….that is what this post is all about. The last 2 months have been full of them.

For starters, Regan said her 1st words on New Years Day. We were visiting some of my family for a few days, and while we were there, she busted out with “Dada” as clear as day. Not the typical “dadadadadada” that a baby babbles when they are learning the ‘d” sound. And not too long after that came the ever surprising, “Hi Dada”. Cutest thing ever! (Even though I would like to get a “mama” in there! But, I guess I will have to wait for that one. She even uses, “hi dada” at the right time. Todd will say “hi baby”, and she will go, “hi dada”. Totally surprised me the first time I heard it. I thought I was just imagining it, but she kept saying it, over, and over, and over, and over. With a big smile on her face. So proud of that little girl!

Next comes the sitting up. As you can see from the picture above, she was very happy about herself when she accomplished that! It happened very fast too. We started seeing great improvement with her sitting about a month ago. And it was slow going, but then 2 weeks ago we sat her on the bed to play with her like we usually do in the evening, and she stayed up…..for 3 minutes! The next day……5 minutes. And now…..10 minutes……sometimes longer, until her muscles get tired. But it is so awesome to see the progress that she makes. She is such a strong little girl!

One night recently while she was sitting on the bed, I said, “Regan, give me high five”. (We have never taught her this before.) She put her hand out to reach mine as if she has known how to do this all along. Todd and I were laughing, (almost the happy tears along with it), as there was no need to teach her that one. She saw my hand go up, and she was like, I can do that too Mom, just watch!

Another night as Todd was coming home from work, I was telling her, “Daddy’s home”. She gets very excited when she hears that. As he opened the door to come in, she saw him, and put her arms out to the side (like she wanted a hug) as if to say, “come get me dad”. I love these moments! The first time you see your child do something new you cannot help but smile. And wish that they would do it again so that this time you could have the camera ready!

100_1727

Last week we had a picnic in the park. (One of the great things about living in Florida….you can have picnics in February!) Regan loved being outside. It seems she likes the breeze as it hits her skin. She got to try the swings for the first time, as she can support herself sitting, and I needed her to be able to hold steady. She was very unsure about it at first, as is evident in the photo. She warmed up to it after a little while. I just love that precious little face she is making!

Sea World

Finally, we visited Sea World yesterday, on Valentine’s Day. We had the best time! It was Regan’s first time there. She has been to a couple of theme parks already, but this is the first time where she was old enough to really notice some of her surroundings. She absolutely loved the dolphins! The above photo is during the dolphin show, of which she was mesmerized. There was so much going on she didn’t know what to look at! But when we went to look at the dolphins up close, and they would pass by us, she would get the look on her face like “whoa…..what was that”. So cute! Another one of the things I love about living in Florida….all the great places our family gets to visit.

It is hard to believe all that Regan has been accomplishing. And to think my little Angel just turned 8 months old…….whoa! I am so proud of her development…..but the time is going way too fast! Sometimes I think that is a blessing of Down syndrome. You get to hold on to each milestone, and each achievement a little bit longer, before the next one hits. There is something beautiful in that. Now I just wish I could slow down time too! Before I know it we will planning her 1st birthday…….

“Having a child with Down syndrome has changed my life…
my life is brighter
my life is more wonderful
my life is filled with love”

Advertisements
2 Comments »

Baby’s 1st Christmas

98

This was positively the best holiday season I have ever had. And I absolutely LOVE the holidays. But there is nothing like seeing it through the eyes of your child. Even though Regan was only 6 months old at Christmas time, and had no idea what was going on, lol, I sure did! And I loved every second of it. Of course, she found the wrapping paper the funnest thing to play with – as we were expecting. But it was cute anyway! We had fun putting bows on her head after she opened her gifts. As you can see, she didn’t enjoy that quite as much as we did…..

100_1692

Earlier in the month we took Regan to Hope Haven. That is a clinic that specializes in children with DS. They do very thorough developmental evaluations, in which they give you strength based assessments. This place was absolutely wonderful! She had one hour with Physical Therapy (PT), one hour with Occupational Therapy (OT), one hour with Speech Therapy (ST), and an hour and a half of educational information. We learned a lot at each visit, and were happy to hear that at 6 months ( a little over actually), that our little Regan was doing very well. We have been hearing that all along, but you never get tired of it! They gave us some general suggestions of things we can do with her to keep her on track. And they suggested that we get her some PT about once every other week to help her with her rolling. She can roll, I have seen her….but she must not feel it necessary, cause she doesn’t often do it. So she will be starting that soon. I was also happy to hear that Hope Haven will help us with her IEP’s for school. An IEP is an Individualized Education Program. All children with Down syndrome will get one of these each year. It basically sets goals for each individual to achieve each school year. Children with Down syndrome are sometimes integrated in regular classrooms for some, or all, of their curriculum. But since it may take them a little longer to learn new things, they do not always have the same goals as the “typically” developing children. But each child is different, DS or not, so that is why an IEP is so great. We don’t want to place all children with DS into the same classrooms all the time, because each child will excel in different areas. And Hope Haven will help the parents with that decision – guiding us in the areas in which the child excels, and knowing where the child may need some extra help. I am so thankful for all of the wonderful programs, and services that our out there to help those of us parenting children that may need a little help along the way. I am sure that Regan is going to do great!

On another note – I started thinking back to those 6 long days that Regan was in the NICU in June, and how that was one of the scariest times of my life. So many wonderful people in my life helped us out during that time by bringing us meals at home (after I was released), coming to visit just to give us support, and just doing whatever they could so that we didn’t have to worry about any of those typical “life” responsibilities, and that we could just focus on Regan. I am so grateful for that. Receiving Regan’s diagnosis at birth was one of the hardest things to hear. And that by itself was enough to handle. I experienced so much stress, anxiety, nervousness…you name it, I felt it. (There was also a great amount of joy….as I loved my new baby girl!) Eventually the fear passed….but for that while in the NICU, I was scared.

So as Christmas was approaching I started to think about all the children that were in the hospital at this time of year. I also thought about their parents and how scared they must be for their child, and how overwhelmed they must be with everything. I imagine they were hoping to have their child home for Christmas, and for some of them, that may not be possible. So I wondered…..what can I do for these families? So I decided to make a toy donation to the local children’s hospital. It wasn’t much, but it was something. When I went to the hospital to drop off my contribution, I was amazed at the large room that was completely filled with toys donated by other individuals and businesses in the area. Even though my contribution was small…..a few children were going to be happy on Christmas because of it. And a few parents may be a little less stressed….. their child had a Christmas, even while in the hospital. Todd and I have decided that this is something we want to do every year. We probably had as much joy in our hearts as the families that benefited from the donations. Christmas really is about giving…..so that is what we did. Besides, we had the best Christmas present we could have asked for – we had Regan home with us!

In having a child with DS, we have learned that you never can know what life is going to throw at you. That 1 in 900 chance of our little girl having DS proves that. No matter how unlikely something is, it can still happen. You actually can be the “one”. I am so thankful that I was able to help some families that had to spend Christmas in an unfortunate place like the hospital. There really isn’t any preparing for something like that. And when something like that happens, and it can happen to anyone, it is nice to have others fill in so you can focus your time where it needs to be – on your family. I am learning a lot about myself on this journey. I never really thought of myself as a selfish person, but I know I am much more unselfish now than I may have been before. I have God, and a beautiful little girl with a little extra genetic material to thank for that. She really is my little miracle!

“Nothing you do for children is ever wasted.” – Garrison Keillor

Leave a comment »

The Value in Difference

Melissa Gallo 2012 2 Melissa Gallo 2012 28

Just before Thanksgiving we had some professional photos taken of our sweet little Regan. (It was hard to choose….but those are a couple of my favorites!) Sometimes I am astounded by the beauty of this baby! And…not just that outer beauty that is so evident in these photos. This little one is going to have a heart of gold…I am certain. My life is so joyful because of her…..and that she was born to me. I love being her mom!

An interesting conversation stirred between my husband, a Tutor, and one of his students recently. For the sake of privacy, she will remain nameless, but for the story’s sake, I will mention that she is middle-school aged. So here goes….Todd was tutoring this young lady one afternoon, and helping her with her English. He was trying to explain antonyms to her….but in the process he drew a total blank on the word antonym. (Go figure!) So, as he was trying to get the word out, she guesses, “amniocentesis”, as it was the first thing she thought of that started with the “ah” sound he was making. Much to his surprise….as you wouldn’t guess a middle schooler would even know what an amniocentesis is, or that it would be at the forefront of their mind. So, Todd said, “No, not amniocentesis”, and then the word hit him. He said, “antonyms”. She said, “oh ok, I know what that is.” But Todd was interested in why she had amniocentesis on her mind. So he asked her what she knew about an amnio. And she replied, “It is a test that a pregnant woman has to check if the baby has a birth defect.” (That term birth defect just makes me cringe!). He asked her how she knew about that, and she said she learned it in school. (It was either science or health class.) Todd was shocked as he could not recall this type of thing being taught in school. So he then asked her, “Well what happens if the test shows that your baby has a birth defect?” The answer she gave is shocking, “Then you abort the baby”. Todd responded with, “Why would you abort the baby?” And she says, “Because, who would want a baby with a birth defect?” Todd sat there for a moment, and then told her, “My daughter has Down syndrome.” She paused, for quite some time, and did not know what to say. He could tell she was feeling uncomfortable at that point. She then changed the subject and they moved on.

When he came home that night and told me this story, I did all I could to help the tears from falling down my face. Not because I am sad that my daughter’s condition has the horrible label of “birth defect”, from which I will not refer to her. But that society is so anti-differences. We are so afraid of what we do not understand. And I get that there are people out there that could not handle this diagnosis. For starters I would ask  them to research it, to be sure you understand what Down syndrome actually means. And if at that point, you still cannot handle it, there is always adoption. There is a wait list in the US for people wanting to adopt babies with Down syndrome. But to think that our schools are indoctrinating our children to believe that being different, to one degree or another, disqualifies someone from being able to have a chance at life, is beyond unreasonable to me. When I think of the idea that babies born with Down syndrome may be fewer and fewer, it makes me sad. Mostly because I feel like that is society putting a “not as worthy” label on my daughter, and those like her. I definitely never expected that my child was going to have Down syndrome. When you realize you are pregnant, and start imagining what life is going to be like with your new baby, that is just not something that you ever think about. But when that baby arrives, Down syndrome or not, they are still your baby. And I could not love Regan more if she didn’t have it. I love her as is. You learn acceptance, and unwavered love. And you want nothing more than for everyone else to do the same. And when someone, or many someones for that matter, believe that the “normal” child is more valuable, it cuts you deep. Because your child is valuable, even if you can’t convince every one of that. And you want your child to grow up feeling accepted, and loved, and wanted. That is all I want for her. And God knows…..the day that anyone even remotely attempts to treat her like she is less of a person, is likely the day that the mama beast is unleashed.  I think I could very well lose my cool…..but will do my very best to keep it together……for her! Because…she’s worth it!

“When we lose the right to be different, we lose the privilege to be free.”

– Charles E. Hughes

7 Comments »