A new baby, and a new definition of the term “special needs”

We’re back, and we’re a new family completely.

A son and a daughter.  It is what I always fantasized about when I was younger.

Just over six months ago, my daughter Marley Lynn was born.  In my mind, having another child would be a breeze.  If I went through a surprise diagnosis with Nicholas, and lived with the trauma that it had caused, then I could handle anything.  I knew now that whether my daughter would be born “typical”, or with some sort of medical diagnosis, I have the grit and the know-how to handle it. I knew my husband and I were an awesome team.  We could handle anything that came our way.

Honestly, after I came out of my post-partum depression with Nicholas, I felt like a warrior.  So I went into that delivery room ready to do better.  I told myself that I would be less afraid, do a better job pushing, listen to the signals my body was giving me, and just crush this whole childbirth thing.  Although there was still a little voice in my head telling me to be cautious, because anything can happen, I silenced it and was able to deliver Marley within twenty minutes of my first push.

Twenty minutes!  Pretty good, right?  Compared to the three hours of pushing for Nicholas, I felt like a beast.

The second that she was born, she didn’t immediately cry.  Supposedly, this is a marker for Down Syndrome, or that something is “wrong” in some way.  But, Nicholas cried when he was born, so every single birth story is truly unique.  I had already learned through Nicholas to not freak myself out with statistics, thankfully.

The doctor laid her on my chest, skin to skin, and she lifted her head up and looked me square in the face.  One eyebrow up, both eyes open.  No crying.

We had a three-second stare-down.

What is she doing?  She almost looked annoyed that I disturbed the peace by bringing her into this world.

“Is she okay?” I asked the nurses.  I didn’t know that babies could do that.  It took Nicholas months of physical therapy to be able to lift his head up, and he didn’t open his eyes like that for a week or two after he was born.  So, to me, she was doing some pretty weird stuff.

“Oh yeah she’s fine” a nurse said as she slurped the fluid out of her mouth with an aspirator.  There it was.  The cry.  My baby was born, and after checking me out for a minute to make sure she was going to keep me, she decided to sing her loud and squeaky welcome song.

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Our girl at 1-hour old

After some alone time with my husband, baby girl and myself, we had our parents visit us in the room.  Everyone took their first photos with Marley, and enjoyed our traditional post-birth Domino’s Pizza like we did when Nicholas was born.  Except this time, instead of hogging Marley, I let them pass her around while I ordered pizza on my phone and looked up ice cream flavors.  They starve you the whole day, people!  I was hungry!

When visiting hours were over, they wheeled us into our recovery room.  I was feeling some pangs of PTSD as I saw the familiar images from after Nicholas was born, but my new status as a warrior mom allowed me to shut those feelings down and live in the current moment.  I had promised my pregnant self that I would do that for Marley.

Then, Marley started crying.

And she didn’t stop crying for three months.

Oh yeah baby.  That “welcome song” was longer than I thought it would be, and came with an interpretive dance.

When Nicholas met his little sister for the first time the next day, we were able to get a few cute pictures, but soon enough Marley started crying, which upset Nicholas to the point of crying as well.  So, that was a short visit. It killed me to watch Nicholas leave the room without me, since I had already missed him so much, but Nick and I had to take some time to get to know our new teammate.

As the next 36 hours progressed, Nick and I had very little sleep.  Marley would only stay in her bassinet happily for short intervals.  The nurses even took her from us not because they had to do load of testing like with Nicholas, but because they wanted us to have a minute of peace!  It was much welcomed I might add.

We were even discharged from the hospital a little early.  Let that be the first of many venues that Marley’s cries have kicked us out of.

There wasn’t as much fuss when we brought Marley home.  There wasn’t the army of friends and family trying to make light of what we thought was a bad situation.  I didn’t have to fake my feelings, or feel ashamed of how I felt.  We weren’t treading into unfamiliar territory like before.  We just got discharged and headed home like it was any other day.  I mean, we considered ourselves seasoned parents at this point.  What’s one more when we already had a well-behaved son to show for our efforts?

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My best attempt at a picture of her “home form the hospital” jammies.  

I knew that newborns sleep a lot, from my experience with Nicholas.  So, I figured we would be able to go home, get settled in, wait for Nicholas to get home and find out new normal during her many anticipated naps.

As it turned out, no sleep was my new normal.

Marley couldn’t tolerate sleeping on her back, because she had such bad reflux.  If you’re a parent in this century you know that a baby sleeping on their tummy is a major no-no.   So, the solution was that she slept on her tummy, but we had to watch her the whole time.  So, there went the whole “sleep while the baby sleeps” strategy.  I couldn’t sleep when I was too busy making sure she was breathing! I have a million pictures of her sleeping not because it was cute, although that was a factor, but because that was the only way that I could get a picture of her without her crying!

The reflux also made it so that she couldn’t tolerate a car seat.  Have you ever even heard of that!?  I always thought that all babies fell asleep in the car.  Not Marley.  She needed to scream for the entire trip anywhere we went.  As you can imagine, that didn’t motivate us to go anywhere.

If we did go anywhere, forget it.  I would have to leave the general area where everyone was hanging out to walk around, jiggle, burp or feed Marley or else she would scare away all of our friends.  People have asked me how I lost the weight so quickly after Marley, and the answer is that Marley made me walk around with her for 24 hours a day for three months!

Oh, and it gets even better.  Anything that was made to allow a person to set a baby down (swing, bassinet, etc.) Marley also hated.  If you even walked toward the baby swing, she would scream.  I had a child that needed to be held.  All.  Of.  The.  Time.

Then, there was Nicholas.

He was VERY unsure about Marley at first.  He used to be the baby, so having this tiny other baby around was weird.  She was just this loud creature that distracted his parents all of the time.

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Unsure of his new sister

For his entire existence to this point, Nicholas was used to getting me as soon as he needed me.  Now, there were frequent times where I couldn’t put Marley down, and he would have to wait for a snack or a diaper change or whatever else he needed in that moment.  That first time when he put his arms up for me to pick him up, and I had to walk right by as his eye welled up with tears, it felt like a knife in the heart.

How could I do this to him?  I had a son with special needs who needed me.  How could I take on this other huge responsibility?  What was I thinking?  This isn’t fair to him. I was his mom first.

Sound familiar, moms?

The mom guilt was REAL.  So when I wasn’t tending to my super needy new baby, I was hyper-focused on Nicholas trying to make his life awesome, so that he didn’t relate getting a new baby sister to a time where his mother started to neglect him.  It was truly exhausting.

So, that’s where I have been all of this time.  Marley’s very special needs were the cause of my long hiatus from the blog, and from life in general.

Eventually, Marley got a little bigger.  Her reflux went away, and she has transformed into the sweetest little girl in the world.  Her new “welcome songs” are the sweet coos and giggles I get every morning just for walking into her bedroom. All you need to do is look at her and she will smile ear to ear.

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This is the Marley we get to enjoy these days.  All smiles. 

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She also loves her carseat now, despite getting a little carsick, can fall asleep anywhere, and loves to hang out with her big brother.

Nicholas has adjusted to being an older brother, and sharing his parent’s attention with his sister.  He even likes to rub her head if she starts to fuss, or pat her back if she needs to burp.

I want to talk more about this process, but this was not the reason that I have returned to the blog.  So much has happened that I need to share, and I wasn’t yet sure where to begin until the events of last night.

Last night was my first ever experience having one of my children have the stomach bug.

My poor sweet Nicholas.  It was horrible.  Puking every single hour.  Many dirty diapers.  Many new jammies, and laundry running non-stop.  My husband set him up on some sleeping bags in the living room so that I could help him right away throughout the night, which I found out was going to be without sleep breaks.

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My sick boy camping out in the living room.

Now, if you are reading this and you also have a child with Down Syndrome, you may recognize the feeling of being a little extra worried when your child is sick.  Maybe your child gets sick easily, or more severely than typically-developing children.  Maybe your child has some specific health concerns that can be complicated by common illnesses like this.  Since Nicholas is only two, it is hard to know where we stand in this regard.  So, when he get’s sick we are both on high alert.

Last night, however, there was a change in how I handled it.  Although I am not proud of this, I tend to turn to google for some quick medical answers.  This time however, the words Down Syndrome were not in my search.  I wasn’t searching “stomach flu and Down Syndrome statistics,” or “remedies for the stomach bug among people with Down Syndrome.”

My search history is as follows:

“Toddlers with the stomach flu.”

“What should a toddler with the stomach flu eat?”

“Rehydration strategies for toddlers with the stomach flu.”

Do you notice something missing?

Nicholas was no longer my child with Down Syndrome who has different medical needs. He was just my little toddler, who caught the bug, and needed his mom just like any other kid.

In a way, I think that having Marley, who thus far has developed typically, has “cured” the way that I look at myself as a mother.  I am still a mom of of a child with special needs, but I don’t necessarily define Nicholas that way all of the time.  Now, I am just a mom of two.  Honestly, if I compared the two experiences that I have had having newborns, I would say that Marley had way more “special needs” than Nicholas had.

Before Nicholas was born, when I heard “special needs” what I really heard was “difficult”.  That child has special needs, that means that it is going to be difficult for them to do what everyone else does.  That’ s really what I thought.

Sure, that might be true in certain aspects of Nicholas’ life, like learning to walk and talk. But, Nicholas has been such a great baby because he just does whatever we do and adapts to most atmospheres we bring him to.  We could take him to a friends house and he will have a great time.  Same at a restaurant.  A mall.  There haven’t been many places where I needed special accommodations to have Nicholas there.

Marley, on the other hand, was so stressful to bring anywhere for those first three months.  We had to figure out who was going to be there, if it was going to be crowded, whether or not there was a quite place I could take her to calm her down after her inevitable freak-outs.  All of that coupled with the fact that she just didn’t like the car did not motivate us to do much of anything outside of our house in the beginning.

So, what I have learned is that special does not mean difficult, it means different.

Because it means different, I don’t believe that I have ever met another child or student of mine that does not have some sort of special need.  I have one student who has a really bad day if I don’t chat with her in the morning and I’ve her a little one on one time.  I have others who need many physical breaks throughout the day, so I have to make sure I schedule them in for their benefit.  Some need some soothing music on in order to do a quieter activity.  Other’s need their coats on in order to feel secure in the classroom.  Are these not special needs of students that are geared toward making them learn more efficiently?

Don’t even get me started on the special needs that adults have just to function during the day.  I can name ten of my own!

Now that Marley decided to be an awesome baby, I can really appreciate the lessons that she has taught me already.  I think that I was meant to have Marley for this reason.  I needed something to show me that my kid is not the only one who needs certain things to be successful.  Although my son is behind in some areas, he is way ahead in others.  And for that, I could not be more proud to be his mom.

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I am so happy to be back in this amazing parenting community I have found with this blog.  Thank you for your support while I was adjusting to my new role as a mom of two!

See you all next week!

 

 

 

 

 

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I was shocked as a new mom to find out that my son has Down Syndrome. I had no idea that my life would be changed for the better! Now, I am using my passion for writing to spread awareness and acceptance for people with Down syndrome.

2 thoughts on “A new baby, and a new definition of the term “special needs”

  1. MARY! This is so beautiful and real and I loved every minute of it. I laughed and cried and related in so many ways. It really makes us realize how beautiful being a mom is. Challenges teach us. They make us better and stronger. You are so gifted with your words! ❤❤ These two kids are just beautiful gifts from God to the absolute perfect parents for them both.

    Liked by 1 person

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