I actually have my own Wookiee.

I suppose we should get her a pink one. This was three-year-old Maggie’s response to me mumbling about looking for a mini crib to replace Lanie’s co-sleeper now that she can get from a lying down to a sitting up position by herself.

I might add that watching Lanie go from laying down to sitting up is as entertaining as it is awesome. That little extra chromosome provides for some serious flexibility that astounds just about everybody who watches her move around.

Anyway, weeks ago Rabbit and I spotted this shirt at Target…

And we both suddenly realized that Maggie is a baby Wookiee.

See?!

I didn’t buy the shirt right away but did end up going back for it because Maggie has Wookiee hair and doesn’t care and how could I not?

This child is equal parts mischievous and loveable and my favorite thing she does lately is give me a hug and a kiss and ask me, while her bottom lip is all pouty,  Am I still your baby Wookiee?

To which I reply, Of course you are.

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Filed under: Maggie

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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Filed under: Down syndromeLanie

There’s nothing like cuddling together on Daddy’s pillow and reading a book about how not to care for a new baby.

These girls sure do love their Daddy. I wonder how he’s going to feel about the chocolate Maggie wiped into his pillow case from her face.

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Filed under: Uncategorized

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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Filed under: Down syndromeLanieLook what I made

People… It’s happened!

My oldest child, my 22-year-old baby girl, got engaged last night to this great guy that we’ve all taken a liking to.

More details to come on a date and any other necessary information.

Gosh, I’m so happy about this!

Photo credit: My ninja friend, Marty.

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Filed under: Uncategorized

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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Filed under: Down syndromeLanie

Three times.

Three times in a row this boy has been the 100th customer at Chick-fil-A and won a bag of Chocolate Chunk Cookies.  I’ve never won anything by placing an order there. Even when it costs more than $60 because I forget that feeding 10 kids actually costs a lot of money.

Matthew has some sort of magical chicken ordering skills or something.  I need to start having him place all of our orders.

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Filed under: MatthewSometimes we do stuff

Things Maggie Says

Rabbit was holding Lanie and Maggie was talking to her, trying to get her attention.

After about 10 second she gave up and said, we need to get another baby. This one isn’t smiling.

This child would like me to get her a new baby of her own. I’m going to encourage her to at least wait until she learns that babies can’t be carried by their necks.

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Filed under: Uncategorized

Did you know that I run every day? I’m not exaggerating. My legs do at least one mile each and every morning and most of the time I run longer. Sometimes I run in the evening too.

Rabbit and 5 of my kids run every day too (6 if you count Lanie in the stroller) and even though we all prefer to run at different times of the day, we run in pairs and I always have at least one of them running with me.

There are things I’ve noticed since my family started running together that are definitely worth telling.

When I started running every day I was not new to running. Matthew(13) and I had been regularly competing in local 5K runs, and I was pushing Lanie in a jogging stroller (Lanie is another reason I run. I’ll explain that in another post later). Pushing that stroller, however, was taking so much out of me that I decided to do a little bit every day to build up more strength. Matthew joined me in that every day running challenge. Two days later, Sam(9) decided to start running with us and the day after that Ben(12) opted in too.  Since then, Gabe(16) and Rabbit started up with our little running club. And just a few days ago, I bought Jesse(8) a pair of running shoes because he wants to start running with us too.

Kait doesn’t run with us because she’s out on her own but she runs every day too and joins us for 5k races.

And now Joe(19) is considering it.

A while back my sister and I were having a conversation about getting kids to be active.  She said (and I’m paraphrasing here) that it should be a family thing and that she had this idea to start a family exercise program to get parents and children working together to achieve fitness goals.

And what she said is really starting to make sense because, while that wasn’t my goal when I started everyday running, I have noticed that in this short time of doing something hard together every single day our already bonded family has become considerably closer. We are setting goals together, encouraging one another, and holding each other accountable. We keep each other working toward something bigger. We keep each other running.

Running every day has become this huge bonding experience that I could never have predicted.

I’m not saying that you need to run everyday or workout or start this crazy, sweaty, heart pounding program to bond with your kids.  What I am saying is that doing something hard with your children, setting goals with them and meeting those goals with them, being proud of what you have accomplished together…  This is the kind of stuff that binds people. And while they grow up and morph into adults in the blink of an eye, and it sometimes seems like there is not much you have in common with them anymore, you’ll have this big thing to give you that common ground.

I am really having trouble figuring out how to end this post so I’m just going to leave it at this.
Don’t be afraid to do hard things with your children.

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Filed under: Friends & Familyi runSometimes we do stuff

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.

wp-1491084824692.jpg

  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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Filed under: Down syndromeGod is.Lanie

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