I took this picture because I thought L looked like the most perfect beautiful angel I had ever seen (doesn't she, though?). When I looked at it afterwards, something occurred to me. When L was first born, sometimes I looked at her and all I saw was Down syndrome. Sometimes I would take a million pictures of her and post the one that I thought she looked the most "normal" in. I hated going in public because I would be constantly wondering if everyone around us could tell she had Down syndrome. Then I would go home and cry because a mother shouldn't feel that way about her baby. I loved her, and it was very hard. I knew that I didn't feel this way because there was something wrong with her. I knew I was having such a hard time because there was something wrong with ME. Even so, I couldn't get my head and my heart to agree. I can't remember the last time I looked at L and only saw Down syndrome. It just started to happen less and less. Now I look at her and just see my sweet girl. Now I go in public and, I assume most people notice, but I do not care. I'm proud of her, Down syndrome and all. The little things that she does that might make someone else look at her with pity are the little things that make me love her that much more. I am so thankful for the good and perfect gift God has blessed us with. She is helping to make me more like Jesus. She is helping me to see and to really know that all the things we call ourselves, all the things we try to find our identity in are just labels. Black, white, rich poor, smart, stupid, fat, skinny, male, female,disabled or not, she is helping me to see all people for what they truly are, beautiful and equally loved creatures of God. Don't get me wrong, I've got a long way to go, but (praise Jesus!) He accepts me exactly as I am and changes me as I go.
Day 31: It's the last day of Down syndrome awareness month! If you stuck with me this far, thank you!
You know, 17 months ago this was not important to me, but now it dominates so much of my thought. There is so much ignorance and prejudice out there that most people don't even realize they have. My hope is that by shedding some light on the subject, maybe someone who would normally make fun of a person with Down syndrome will see how much they go through while maintaining a positive spirit, and will start to have compassion rather than disdain. Maybe a family who is full of fear after a diagnosis will see how much we love our girl and how much we are NOT suffering and will have less fear and more faith that they will get to where we are too. The abortion rates are so alarming to me that it makes me feel physically ill sometimes, so maybe someone will see into our lives and choose to keep their baby. THAT is what it's about, y'all.
God didn't make a mistake when He created L, and that is the truth. I am so proud of her, so wildly in love with her, I cannot imagine a second without my sweet girl. I know all of my fellow special needs parent friends feel the exact same way about their own children.
Day 30 (Down syndrome Awareness Month): Last therapy but not least, L has developmental therapy twice a month for one hour in our home. Her developmental therapist helps us set goals for L in all areas (physical, social etc) and makes sure we are on track for meeting these goals. An example of a goal might be "L will be able to walk. We will know she is walking when she can take 20 steps independently." It might seem unnecessary to someone outside looking in, but (for me at least) I like setting goals. We are pretty laid back about it, so it helps to keep me focused on helping L if we have something we are working towards. And we love miss Kiesha!
Now that I've told you about all of her therapies, I want to add something. Her therapies are our choice. If you have a child with Down syndrome, therapy isn't mandatory. We choose to put L in therapy because we want to give her an early start at reaching any dreams she may have and doing anything she sets her mind to as she grows. Like with any child, however, we are immensely proud of whatever she does in her life, and we love her exactly as she is! In her 17 months, she has already brought more joy and love to us and those who love her than I could've ever imagined for any child of mine.
Day 29 (Down syndrome Awareness Month): There are so many wonderful families, events, and programs that you are blessed to be a part of when you have a child with Down syndrome. My favorite event of all is the Buddy Walk! Today was our 2nd annual Buddy Walk. L unfortunately had hand foot and mouth, so we were only there for a short time and had to quarantine ourselves while we were there. We still got some cute pictures though! Here is one of my favorites...
Day 28 (Down syndrome Awareness Month): L has occupational therapy once a week for one hour in our home. Occupational therapy works to improve a child's ability to participate in the daily routines of life. This could mean working on sensory issues, fine motor skills (things that require the use of smaller muscles, as opposed to the larger gross motor skills which PT works on), hand-eye coordination, social skills. The OT will help with any number of things ranging from helping a child learn to feed or dress themselves, to improving on attention span. L gets to do all sorts of fun stuff during OT like playing with silly putty, blowing and popping bubbles, doing puzzles, playing with blocks etc.
My plan was to take a picture of her during all her therapies this week but we've had to cancel most of them because L has been sick, SO here is a pic of her transferring fake strawberries from one basket to another. Basically it's the only picture I could find of her doing something she might do during OT!
Day 26/27 (Down syndrome Awareness Month): Once a week for one hour, L has a feeding therapist who comes to work with her on feeding related issues. We started feeding therapy because L was having a hard time transitioning from nursing to drinking from a cup. We soon figured out it was just because she didn't like what I was giving her to drink! Now we are working on introducing new tastes and textures and chewing properly. Teething can be delayed in children with Down syndrome so L is currently toothless, which makes it harder for her to eat certain age appropriate foods.
She is also about to start speech therapy which will be with the same person who does her feeding therapy. She will work with L on strengthening muscles in her mouth and getting her to move her tongue and mouth in different ways to help improve her speech and encourage new sounds. L currently has around 30 words or so, including signs, so she is doing pretty well in this department.
Now you know!
Here is a video of her being extra cute while she eats.
Day 25 (Down syndrome Awareness Month): Earlier in the month, I mentioned that low muscle tone in babies with Down syndrome makes them have to work extra hard to do things like sit up, crawl, walk etc. To help her with this, L has physical therapy, or PT, once a week for one hour in our home. Her physical therapist works with L on her gross motor skills to help her reach new physical milestones, and shows me things I can do during the week to help counteract the effect that low muscle tone has on her physical abilities. All of this is done in the form of play, so L usually has fun with it. If she starts to get fussy, we move on to a new exercise. If she's had enough, she lets us know, and we call it a day! Here's a pic of L during physical therapy this morning.
Day 24 (Down syndrome Awareness Month): Because Down syndrome can cause physical and cognitive delays, L is involved in several (soon to be 5) weekly therapies to help give her a head start. It sounds like a lot, but it actually takes up less than 3% of our time. Starting tomorrow, I'll give you a run down of one therapy a day. For now, enjoy this video of L playing with her shadow today.
Day 23 (Down syndrome Awareness Month): L gets complimented on her eyes all the time. Part of this is because they are a beautiful shade of blue, like her dad's, but her Brushfield spots really make them stand out. Brushfield spots are small white spots around the iris and around half of people with Down syndrome have them. It almost looks like she has stars in her eyes and I love them.
This isn't the greatest picture in the world but I wanted to use the flash so the Brushfield spots would really show.
Day 22 (Down syndrome Awareness Month): I talked a little about low muscle tone earlier in the month. Because of her low tone, L's feet pronate when she is standing/walking. To help correct this and give her more stability, she wears SMOs on her feet (when I can remember to put them on her). SMO stands for Supra Malleolar Orthosis, they are basically just plastic braces with a cute little pattern on them that go over her feet and a little above the ankle. Here's a pic of her taking them off, which she does immediately every time I put them on her if I don't put shoes over them.
Day 21 (Down syndrome Awareness Month): People with Down syndrome are more prone to certain medical conditions like hearing and vision problems, thyroid issues, leukemia (although they are less likely to get certain other cancers and more likely to overcome leukemia than the general population), dementia, and heart defects. Most of these are easily treatable.
Like most of the women in my family, L has hypothyroidism and takes a pill for it daily. She loves to eat so much that sometimes she signs "more" after I give it to her. She is also being followed by audiology for potential hearing loss in her left ear, although that is more precautionary than anything. Other than that, she's a healthy little bean. Now you know!
Day 20 (Down syndrome Awareness Month): Today I want to share a video that I came across. I LOVE this video and hope you do as well!
Day 19 (Down syndrome Awareness Month): There is a common misconception that people with Down syndrome are always happy. This is untrue. People with Down syndrome experience the full range of emotions. L is good natured, but she is definitely not always happy. Like any other child, she gets frustrated (especially when we run out of yogurt), angry, embarrassed, sad etc.
Consider this my day 16/17/18: There are three types of Down syndrome; trisomy 21 (nondisjunction), mosaic, and translocation. Down syndrome is caused by an extra 21st chromosome, but the way the chromosome arrives and presents itself determines the type of Down syndrome a person has.
L has trisomy 21. It is the most common and accounts for around 95% of people with Down syndrome.
It is set in motion long before a baby is conceived and is a random occurrence, kinda like winning the lottery 😉.
For a more in depth explanation of the three types of Down syndrome, click here: http://www.ndss.org/down-syndrome/what-is-down-syndrome/
Day 15 (Down syndrome Awarness Month): Children with Down syndrome can and do learn to read. Visual memory is usually a strength and a lot of children with Down syndrome can learn to sight read early on. If L's obsession with books and being read to is any indication, I think she will be a book worm like her daddy.
Here's a video showcasing L's love of books. She got her favorite book out of her book basket across the room, and started signing "book" at me (which is her way of saying she wants me to read to her). I was in the middle of something and didn't jump at her command. Finally she got frustrated enough that she decided, if I wasn't coming to her, she'd bring the book to me. Obviously I read her the book right away.
Day 14 (Down syndrome Awareness Month): People with Down syndrome are generally shorter in stature. Girls average 4'9" and boys 5'2". L is a petite little thing. At her last check up, she was in the 3rd percentile for weight and the 1st percentile for height on typical charts (40-50th percentile on Down syndrome charts) Love my teeny tiny bean!
Day 13 (Down syndrome Awareness Month): Approximately 40-50% of babies with Down syndrome will be born with some type of heart defect, often easily corrected with surgery. L had a small ASD which, thankfully, closed on its own and didn't require any type of open heart surgery.
I don't have a pic for this so here is a #tbt.
Day 12 (Down syndrome Awareness Month): Speech is often delayed in a child with Down syndrome. Because most children can learn to sign before they learn to speak, a lot of parents choose to teach their child with Down syndrome basic sign language to help them communicate their needs. Here is bed-headed L doing most of the signs she has learned so far.
Day 11 (Down syndrome Awareness Month): It is a common misconception that children with Down syndrome are only born to older mothers. This is untrue. While your chance of having a child with an extra chromosome does increase with age, 80% of babies with Down syndrome are born to women under 35.
Day 10: It is estimated that between 60% and 90% of pregnancies with a prenatal diagnosis of Down syndrome end in abortion in the U.S. In other countries, it has been found to be as high as 99%.
Too frequently outdated information, misinformation, or no information is being provided to parents at an incredibly vulnerable time.
It's really scary to hear your child has Down syndrome, I get it. I'd venture to guess that almost no one is thrilled to hear that news. All I can say is that it is impossible to understand how much you will love your child before you know them. Raising L and getting to know her has proven wrong all of my preconceived ideas of what life with her would be like, of what she would be like, of how I would feel about her, and it has changed me so much for the better that it's impossible for me to explain. She has opened my eyes to what is truly important in life.