Down syndrome Archives

No picture but lots of words.

After the last few days of feeling a little on the grumpy side, I think things around here have taken a turn for the better.

Lanie was almost back to her normal self last night without any ibuprofen at all.  This is a huge deal because I had almost forgotten what adorable bedtime-Lanie was like but when she started crawling all over her Dad and trying to mash all the computer’s keyboard buttons it was so enjoyable. She’s still not super smiley but she didn’t cry at all last night, not even as she fell asleep and it’s probably been a month since she’s been like this. Normal.

She is still a little congested and is snoring right good even as I write this but she slept through the night and there is just a lot to be thankful for.

Like our homestudy today. I am so thankful that they’ve let us get to this point. I know at any time they could deny our family the chance to foster simply because of the number of minors we already have in the home. We only have two more steps. The homestudy and the health inspection. I’m not nervous at all and I think it has helped that I’ve been well aware that this is not a guarantee for us until the license is issued and even after that I think we’re supposed to be a standby foster family and will not be top of the list.

We leave tomorrow to go visit my mom and my sister and her family and we haven’t seen them in 4 years and I am much more excited than I usually am for a trip.  Motophobia is a real thing and it seems to be worse for me every time we go anywhere. I have even considered going to the doctor to get something for anxiety for longer car trips but as of right now I think a bottle of whiskey will work.
Of course I’m kidding.
I prefer vodka.
I really am excited to see my family. My brother is driving down with his boys too and we’ll have all the cousins together for the first time ever because there have been a couple of new kids born in the last 4 years.  It’s going to be fun.

I should probably get off the computer. I’ve been typing this out for almost an hour between hugging Maggie and drinking coffee and texting my sister and having non-descript conversations with my younger kids but I still have hairs to cut, the Walmart to shop, a post office to visit, bathrooms to clean, laundry to wash, bedrooms to straighten, and snacks to prepare for the trip and it’s going to be a busy day for sure.

But first, we run.

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I’m a bit fussy about things at the moment.

Today has largely been spent taking care of a still sick Lanie. She wouldn’t eat without first downing ibuprofen and I have given her so much of the sticky, orange medicine over the last three weeks for high fever and pain that I was questioning whether it was okay to continue doing this even though on Monday her pediatrician advised it. I decided to give her a medicine break but after about 15 hours without anything, no food or liquids at all, I decided to call the doctor again to get some clarification.

They didn’t answer my question about ibuprofen on the phone. Instead, her doc decided to test her for strep so we went back in and the whole time I was there they were acting like I was just an unreasonable mom going nuts over her child’s standard cold virus.  They even apologized when the strep test came back negative and she couldn’t give Lanie antibiotics and why do doctors always assume I want antibiotics when my kids are sick? I don’t even take my kids to the doctor until they have been ill for an extended period of time. Like at least 3 weeks. Even with Lanie’s Down syndrome, I am still a wait-it-out type of mom in most cases.

I wasn’t being crazy. She’s been sick for 3 and 1/2 weeks.  She refuses to eat – won’t even nurse – unless she’s been dosed with ibuprofen. She’s lost a half a pound and weighs less than she did 2 months ago. This would be concerning for any child but is especially concerning for a child who is only 18 lbs at 17-months-old with a history of failure to thrive.

And I didn’t even call for an appointment anyway. I called to get clarification on the safety of continued use of ibuprofen in a baby. They asked me to bring her in.

She doesn’t have strep throat according to the rapid test. She may have hand foot and mouth disease based on a couple of spots on her left palm and a bunch of spots on her the left side of her face and left shoulder. Not sure I’m buying that one but whatever because I just wanted to know if I should be concerned about continually dosing her with ibuprofen.

I wish I had choices.  I wish there was a Down syndrome clinic here.  I wish my daughter’s doctor knew more than I did about Down syndrome. It would be nice if there was a note on the front of her chart that said something like, this child has down syndrome – please review history – Google is your friend. 

I have more to say but I’m getting more frustrated the more I write so I’m going to stop writing and go be awesome.

The picture is of Lanie at the doctor’s office. She didn’t stop fussing until she realized the paper crinkled. That worked to keep her calm for a good 2 minutes.

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Yesterday Rabbit, Joe, and I took a trip to the Families First Network to get our fingerprinting done for background checks because we’re becoming spies or something. We’re perfect for this because nobody would suspect a family of 12.

For real, though, this is the next step to becoming foster parents and was so much easier than the mountain of paperwork that we had to fill out and get approved through some magical chain of case workers and we only have the home study part to complete now.

While we are familiar with the process because we’ve already completed our home study for adoption through the foster care system, it’s a little different when the children aren’t being placed with you permanently and the home study will have to be slightly more involved.

Anyway, this post wasn’t supposed to be about fostering. It was supposed to be about Lanie but apparently, I can get sidetracked before I even start something.

We took Lanie to the office with us and I was so surprised when it didn’t seem to register with anybody that she had Down syndrome.  I wondered if it was because she was more friendly and curious than usual, or because she had her thumb in her mouth…

Maybe these were just unusual people. I don’t know. It really did appear that nobody saw it.

Either way, I was so relieved. Relieved that I didn’t have to wonder what they were thinking when they looked at her. Relieved that I didn’t have to concern myself with the inevitable moment that I would have to say Down syndrome. Relieved that I didn’t need to steel my heart for when this light hearted interaction would change after those words were said. Because that’s what happens. Whether intentional or not, that’s what people do when they suddenly realize what is different about her.

And then I felt so guilty because why do I care? We love her. We love her as she is. We love her because of who she is. I wouldn’t change anything about her except maybe that her natural lenses would magically grow back perfectly without cataracts because putting contact lenses in a baby’s eyes does not get more fun as they age.

But I do care. Does that say something bad about me? Or is this normal because the more I think about it, the more I think that wanting others to value our children the way we do is normal for any parent of any child ever. Unrealistic? Sure. But true nonetheless.

While it would be great if everybody’s reactions were as perfect and normal feeling as they were yesterday, I am reminded that people have more growing to do. That I have more growing to do. And we all need to extend each other a little more patience.  A little more understanding. And a lot more grace.

 

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The more we know the better we do.

Last night when I started writing this post I was feeling quite stabby but this morning, with a fresh perspective and a calmer heart, the tone has changed. So goody for you because you’re getting less ranty-Mel and more preachy-Mel, although I’m not sure either me is better than the other. Also, when I use the word you in this post what I really mean is you know who you are and it may not necessarily apply to you but if it does you’ll know it.


Growing up, my mother, and also my 4th-grade teacher who had adopted two girls with Down syndrome, had impressed upon me that certain words, though acceptable in society, should have no place in our vocabulary.

Not all that long ago and throughout much of the 1900’s people with Down syndrome were not considered human (and, sadly, this is often still debated in the scientific community). The word retard was at the height of its use during this time to describe a Down syndrome and those with mental disabilities. It was then appropriated to describe things or people that were stupid, ridiculous, worthless, relating them to a Down syndrome (notice the absence of the word person).  And while retarded can be used in a way not tied to this derogatory use, better words do exist and probably should be used. Retard was not, and is not now, a word used in a positive way.

I have to admit that even though I’ve never used the word retarded to describe stupid things or people, I had never understood why it was considered such a bad word by so many. I reasoned that as long as a person wasn’t using it to directly insult somebody with a disability it shouldn’t be considered derogatory and why is everybody so sensitive all the time?

But then there came Lanie.

On March 15th of last year, I gave birth to this absolutely beautiful baby girl.  She was born in the traditional fashion, 7 lbs 3 oz, goopy and crying and healthy and with Down syndrome.

And JUSTLIKETHAT everything, my whole world, changed.

Still, for months, while in the throws of denial about Lanie having Down syndrome, I continually tried to defend the use of the word retard, a word I never even used. I was fighting against Down syndrome. Fighting against how I felt it changing me. Fighting against becoming one of those moms. But the more I heard the word used in general conversation the more I cringed and hated the sound of it because I knew it was harming my child. It goes deeper than just hurting feelings. Using the word retard helps to sustain a negative view of an entire group of people who simply don’t deserve it.

When you use the word retarded to describe something stupid or ugly or wonky you are relating that thing to people like my 16-month-old daughter. It is degrading, dehumanizing, and devaluing. And whether or not you mean it like that, that is exactly what you are doing and how people like me hear it. And when you defend your use of it, you are not only perpetuating the continued use of it in our society, you are saying that using that word is more important than the human it is damaging.

And the truth is, parents of children with Down syndrome are often too sensitive and that does push people away and that topic definitely needs its own post. But there is a line, people, and using the word retarded is crossing it.

I understand that maybe you didn’t know this because not long ago I didn’t know this. But I do now so I’m telling you.

And now that you know, you should do better.

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My fabulous friend, Marty, recently loaned me her savvy photography skilled self and helped me get some pictures of Lanie’s Down syndrome traits for this project here on my blog.  I want to highlight her Down syndrome characteristics, while at the same time point out that she is more like her siblings, Rabbit, and me than she is different. I think for many new parents of a child with Down syndrome, this can be a sad thought – that their child won’t look like them or their siblings. That they are going to be so different. Facing this concern head on was so helpful for me to begin accepting Lanie’s diagnosis and I want to talk about it a little to help anybody else who is now where I was then.

Babies with Down syndrome have a total of 47 chromosomes. There are two sets of 23 typical chromosomes, one set from Mom, the other set from Dad. Because of this, the vast majority of their physical traits will be from their parents and they will have very much in common with their siblings, as I will point out below when it applies. That one little extra chromosome does have it’s own role to play in how our children with Down syndrome look, however, and that is an important part of this post too.

First and foremost, babies with Down syndrome look like babies.

Impossibly cute babies, I might add.

One of the most telling facial features of Down syndrome are the almond shaped eyes that turn up at the outside corners. They also tend to have pockets underneath their eyes sometimes making them look sleepy. Lucy(6) was also born with almond eyes just like Lanie but, while Lucy’s still have that doe eye angle, they are no longer almond shaped.

I love Lanie’s adorable ears and how they have this slight bend, though they do not have the significant folding over that is somewhat common in Down syndrome.

Another common Down syndrome marker seen on ultrasounds is a low or no nasal bone.  Lanie does have a nasal bone, though it is slightly shorter than average.  While I was pregnant with her, my perinatologist didn’t think she had Down syndrome at first, even with her other markers, because he saw a nasal bone on the ultrasound so I guess it’s very common for children with Down syndrome to not have one at all. I’ll also add that Kait(22) Maggie(3) and Sam(10) were all born with low nasal bones so it is normal for our kids.

One of her sweet little starfish hands has only a single crease across the palm, commonly seen in Down syndrome. However, my typical 14-year-old delights in the fact that he, too, has a single crease on one hand just like his baby sister. You’ll often find the pinky finger bent inward or missing a joint in a child with Down syndrome. This is not the case with Lanie.

Her adorable baby feet.  She was born with a sandal gap between her big and second toes on both feet.  This is very common in children with Down syndrome. Also, it’s very common in children without Down syndrome. I actually question whether it is a legitimate characteristic of Down syndrome because half of my children have a sandal gap and about 50% of the people I talk to about it have a sandal gap. It seems pretty common across the general population.

But the little crease between the big and second toes on the sole of the foot is not as common in typical kids and seems to be a distinct, though less recognized Down syndrome trait.

Lanie’s hair is growing in a very distinct pattern. From my experience, babies with Down syndrome tend to grow longer, thicker hair on the tops of their heads. They start out with natural mohawks. This is absolutely the case with Lanie, as well. Maggie also had similar baby hair and she ended up with a sort of mohawk/mullet hybrid that is still growing out now even though she is 3. 

And her hair is a medium brown color. This is also said to be very common in Down syndrome. I’m not so sure about that, however, as I have seen many, many children with Down syndrome who have blond, red, or black hair. Plus, I have 4 other children and a husband with medium brown hair and I had medium brown hair as a child, which has since turned to dark brown. So I’m thinking the hair color is more likely to come from the parents than that extra chromosome.

Edited to add this: And her mouth turns down at the corners. It’s also very small and the roof of her mouth is quite high. Matthew also has a very high arch in his mouth and Kait’s and Matthew’s mouths are smaller, just like Lanie’s. Many children with Down syndrome have protruding tongues that appear large, however, Lanie’s tongue doesn’t protrude all that much. It mostly stays inside her mouth or sits just on her lower lip. I have heard that this can change as she grows and speech therapy can be very helpful.

And finally, the extra skin on the back of her neck. This fold used to be more prominent but has become less noticeable as she has grown. We had to work to get a decent picture of it. She wasn’t cooperating.

Not all babies with Down syndrome will have these same characteristics and there are many characteristics of Down syndrome that Lanie doesn’t have.  I have also found that most of her Down syndrome characteristics can be found in my typical children, as well.

We see our other kids in Lanie every day.  She is more like us than she is different.

Thanks to my long-time friend, Connie, who helped me with this one. I edited the post and this next part is no longer necessary.  I want to add here that there is something distinct about Lanie’s mouth that I think is a Down syndrome trait but I really cannot pinpoint what exactly it is.  If you can see it please leave a comment telling me what you see.

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Last night Lanie tried to turn herself into a mummy.

Or maybe it was a cyborg.

 

Not really.

In real life she was actually having a sleep study done and it was an awful experience.  While she was initially delighted in all the probes and wires and laughed and clapped as the techs covered her in goop and gauze, she quickly tired of the stickies on her face and fought me like she has never fought before. It was almost an hour of her screaming and pushing me away with her whole body and a strength that had me thinking hypotonia my arse before she had spent all of her little baby energy and fell asleep. For one hour.

Then restlessness set in and she was angry-napping, half waking often and wanting to suck her thumb but this probe thing was in the way or roll over but the wires kept stopping her.

It was a long, sad night watching Lanie having such a hard time.

We got home at around 5:45 am. She took a really long nap and has been exceptionally happy since.

Me…
I feel like I have a hangover.

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I have a lot of words today.

I’ve put together 21 things I’ve learned and observations about being the mother of child with Down syndrome. I’ve only been doing this for a year so far so I’m sure I still have tons to learn and I’m interested in seeing how my views change and grow in future years. But as of right now, this is where I am.

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  1. Having a child with Down syndrome is so easy.
  2. Having a child with Down syndrome is so hard.
  3. How I reconcile numbers 1 and 2, I don’t know. But they are both true.
  4. In the beginning, I felt broken and lived most of my days in denial to avoid dealing with it. Other moms who had been where I was said that it would eventually be okay. That I would be okay.  They made me angry because I didn’t believe it would be that way for me.  I thought that I would be the eternally broken mother that would never be able to accept what was and that I would fail Lanie because of that.
  5. They were right though. Everything is okay. Really okay.
  6. But I’m still afraid I am going to fail her.
  7. I’ve learned that a baby with Down syndrome is just a baby.laniebunny She eats and poops and has opinions about things. She giggles and plays with toys and rambles on about nonsense in her baby babble talk. She loves her daddy and her siblings and vanilla icing. She grows and meets milestones and is always learning new things. She cries when she doesn’t get her way. She dances when she’s happy.
  8. I have learned that many mothers of children with Down syndrome can be sensitive and snarky about what you ask and how you ask it and what order the words are in and people first language, people! It’s too hard for me to remember all the rules and I have a child with Down syndrome! I get why people are hesitant and uncomfortable to ask about our kids.
  9. I am really okay with people asking me questions about Lanie’s Down syndrome.
  10. Lanie has to work hard at so many things and everything has to be therapy.  I knew this but didn’t           understand it. Most babies learn things in a natural pattern with no need for much encouragement but with Lanie, we have to make her work for it, reach further, try harder. Simple things like getting a toy that’s a few inches out of her reach take every bit of effort she has and she often fails. It makes me sad to know this will be her whole life.
  11. But unconditional love, forgiveness, generosity, joyfulness and optimism are things likely to come naturally to her thanks to that extra chromosome. If only these attributes were valued more in our society.
  12. Parents of children with Down syndrome (me!) are unbelievably proud of their kids. lanieclapsmarch31We want to talk about them and show them off and celebrate every little thing they do because they are amazing and you won’t understand this unless you have a child with Down syndrome. You’ll just have to trust me. Amazing.
  13. Lanie has numerous therapists.  Most of them live right here in our house and are under the age of 18. maggiehugslanie It’s really cool the way my other kids love her and play with her and work with her. They are so encouraging.
  14. Knowing what I know now, there is nothing I could go back and tell myself that would make any difference in how I felt and handled the news that Lanie was likely to be born with Down syndrome.  I had to feel what I felt to learn what I’ve learned to grow as much as I’ve grown to get where I am now.
  15. Having a baby with Down syndrome slows everything down. It’s such a blessing to get to enjoy each stage of babyhood just a little bit longer than I did with my typical babies.
  16. But, also, I get discouraged by this more than I’d like to admit.
  17. I want to buy all the therapy things. Anything that Lanie’s therapists have in their rooms I want to buy for her.  It’s not realistic but it doesn’t stop me from trying.
  18. People are sometimes uncomfortable around me now. I know they don’t mean anything by it, and it isn’t terribly visible, but I can feel it in all its heaviness none-the-less.
  19. Having a child with Down syndrome can be very lonely.
  20. God has spent many years preparing me for this. Even though it took a long time for me to accept that Lanie had Down syndrome, looking back I can see that before she was even a thought, God was already teaching me many things to prepare me for her. 
  21. And it’s a better place since she’s come along.

And if you have run across this page because you are just starting this journey and are searching for help, this is the best I can offer you:
Be patient with yourself. It takes time to get through the shock. It is an emotional rollercoaster and, for me, it didn’t matter how positive anybody was about Lanie’s diagnosis, I just had to let myself feel those emotions as they came. After a while, they didn’t come as frequently and joy has now replaced any sadness, for the most part. You may not be ready to hear this yet so just put this in your pocket for when the roller coaster slows down: Someday soon it will be okay. You will be okay.

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I blogged on Friday and then I didn’t blog through the weekend.  I had expected I would pick it up again on Monday but then I didn’t do that either and now it’s Wednesday so I figured I’d just post an update of sorts.

Things that happened while I wasn’t blogging:

— Our main toilet has started flushing on it’s own.  If you have read this blog for any length of time you know that it was about time something like this happened again.  We are known for appliances and other supposedly inanimate objects to start deciding things for themselves.  Remember the Tell Tale Microwave? How about the range?

— Kait’s guy sprung for dinner on Friday night and it was a great evening.  I really enjoy double dating with those two.

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I almost spit water out of my nose, which is par for the course when I’m around Kait for any length of time.  I would explain why she’s sitting on the ground by the trash can but you kinda had to be there. You really missed out on that one.

— Rabbit got me exactly what I wanted for my birthday, which we celebrated on Sunday night.  I wanted my own Aden & Anais bamboo blanket because Lanie’s is so soft and I felt bad for constantly stealing it from her.  He got me two of them.

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I’m over the moon in love with these blankets. And him.

— Will somebody please make an infographic to help husbands understand that if an Amazon Prime package is delivered to our door we will be compelled to open it unless we know that we shouldn’t because you tell us there is a Prime package coming that we shouldn’t open? Because that happened.  Again.

— I turned 42 on Monday and now have the answers to life, the universe, and everything. This should be a very informative year for you all. You’re welcome in advance.

— Spring happened on Monday as well and BAM! Just like that, it’s 85 degrees. Loving it.
I love Spring weather. I love the sun. I love warm afternoon rain showers. I love the rosy glow of my kids’ cheeks when they’re warm from running around outside. I love their bare feet and dirty toes and wild hair.  I love Florida.
Also, I love free ice cream at the Dairy Queen.

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— Tuesday was World Down Syndrome Day. We are still trying to figure out how our family will celebrate this day but yesterday we wore our Nothing Down About It tee’s and went to the library.

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Then we went to eat a Chick-fil-a.  There wasn’t one table open. Not even outside.  We ended up having to have them bag our food so we could take it home, which was sad because the kids couldn’t trade their kid’s meal toy for an ice cream cone.  I gave them a dessert anyway but now I have all these little kid’s meal toys all over the place.
Rabbit commemorated the day by wearing mismatched socks under his flight suit and I also did my morning run in mismatched socks.

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— Matthew and I have been running at least a mile every day. We do 5K races together but pushing Lanie in the stroller was killing me and running was no longer fun. We have some good hills in our neighborhood so I make sure to run some every day to help make pushing the stroller easier and help keep the enjoyment in running. Today was day 8.  Lanie loves it.

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The hills are still killing me but I can tell that I’m getting stronger. I’m starting to wonder how it would feel to run without pushing a stroller. I bet I could run like the wind blows.

Oh, and Maggie decided to floss.

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I asked her what she was doing and she said, I need to floss. My tongue is stuck in my tooth. 

And there you have it, my (mid) week in review. Now go and make yourself a Bavarian Crepe today because it’s National Bavarian Crepes Day.  Who knew.

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How they do St. Patricks Day in Whoville.

Last year on this day I was in the hospital with Lanie, who was just 2 days old. She had bad jaundice, was not pooping well, had a wonky thyroid, unsettling sugar levels, and a rough echocardiogram.

wpid-wp-1460835101529.jpgThey couldn’t find a vein to redo her IV and had to call in the NICU nurses (again) to help find a vein. I remember nurses wearing cute shamrocks and one had a small one painted on her face. I appreciated her effort but, and I don’t know why, it all made me feel so sad.

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I’ve been thinking back on that day and I realize how far she has come. How far I have come.

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#theluckyfew is darn right.

A few days ago I told the kids that I was going to make them green pancakes for breakfast on St. Patricks Day. Then I woke up this morning and remembered that Gabe has cello lessons on Friday mornings so I promised the kids that I would make the green pancakes for lunch instead and that is what I did.

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Traditionally, I try to remember to buy the kids a box of Lucky Charms for March 17th, which I did, so I topped the pancakes with some syrup and added Lucky Charms marshmallows on top to keep the old tradition going strong and the whole thing turned out to look like something you’d see in a Dr. Suess story.

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The kids thought they were terrific, especially Jesse, who couldn’t stop talking about how amazing it looked and how great the color green was going to taste.

Pancakes with Lucky Charms on top for lunch was delicious, indeed.

I should also note that I went on a run today.

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Lanie. A year in review.

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