Yo soy La Lay

I just returned from the second night in a row at the doctor with Lauren.

(I will say this – every time I refer to going to the doctor (like above), every time I call and make an appointment, or give the scheduled child’s name or birthday, I give Tessa’s information first.  I have grown so accustomed to her being the patient that her info just pops out of my mouth.  When I wrote that first sentence, I typed Tessa and had to go back and correct myself.)

All this considered, it is not uncommon for my other two hooligans to need my attention… and when they need it, they get it.

This was a huge concern of mine upon Tessa’s birth.  Would Down syndrome envelop every facet of our life?  Would 24 hours pass where her needs weren’t first and foremost on our minds?  Would Ellie resent us for this?

It’s not our reality.  Truly, truly, after some time has passed in life, I can say that I am able to devote time to all of my little ladies. Ellie is very vocal about when she feels like she needs more attention.  Lauren is pretty basic so far.  But both get time with Mom, as does Tessa.  I sometimes get a little sad that most of Tessa’s Mom Time is centered around doctor appointments or some kind of life-learning experience, but I am working on that.  Ellie gets sweet fondue and shopping dates, so it’s probably with Tessa that I most need to step up my game.  This is not what I had envisioned… but once again… it is good.

Mom and Ellie Cookie Baking Bonanza

Marcus Sikora is an awesome guy who wrote a book called Black Day: Monster Rock Band.  My kids LOVE this book and I think you should buy it.  It’s so perfect for Halloween.  We watch the DVD version of the book pretty much every day during October and Tessa sleeps with the book (which is hard cover so ouch).

Marcus and his mom, Mardra, came to our Chicago-area conference last October and told a little bit about the story behind Black Day, as well as Marcus’ love for acting.  Marcus did a Q&A session with the crowd and signed autographs.  My girls think it is pretty awesome that we have a signed copy with “omg his REAL handwriting!!”

This month for Down syndrome Awareness Month, we decided to donate a copy of Black Day to both of the girls’ schools.  I think it’s pretty awesome that Tessa will be able to visit her school library and find a book written by someone with Down syndrome.  It’s not something we foresaw on the day she was born, but it has been an excellent plot twist nonetheless. 

To buy Marcus’ book, click here:  https://mardrasikora.com/black-day/ You will love it!

We knew that fun would sometimes be more challenging, but the surprise for me is when, and my own internal conflict about it.

Sometimes Tessa struggles with loud places, or places with a lot of stimuli around her.  This is especially true for things that happen around bedtime or when she should be napping.  For example, this weekend, we attended a birthday party at a local restaurant during the early afternoon (nap time).  It was in a back room, but the music was loud, and the people even louder as they enjoyed their time together.  We took one step in the door and Tessa immediately shut down.

The odd thing about this is that we could have walked in the same environment 2 hours earlier, and she would have been fine.  But even stranger, we were in the exact same scenario one week earlier at Lauren’s baptism party (same time of day, perhaps even more noise) and she didn’t struggle at all really.  Some laughing freaks her out, some just makes her laugh.  Some loud noises cause a meltdown, others pass with no reaction.

What we are left with is a conundrum.  We have two choices: avoid the potentially upsetting environments altogether, or keep going and make her learn to deal with it.

This is where parenting Tessa gets a little messy for my soul.  When she struggles, it pains me.  My eyes well up with tears, and I feel panicked.  Clearly it hurts her also, because otherwise she wouldn’t be so upset.  But I also know that we cannot avoid all of the triggers.  I cannot always keep her safe from those situations.  She will eat in the cafeteria someday, or want to go to a party with friends, or go to a bar with live music!  But when we are struggling with one of these situations, and I am forcing her to deal with it, I feel mean.

It’s not fun.

There is no nice, neat way to tie this up, no pretty ending or poignant final thought.  It is a struggle.  Not a debilitating one, but one that weighs heavy on my heart.  I did not, and do not, feel this way with Ellie (and trust me, there is Mom Guilt about that, also).  I suppose I’ll just keep on trying new solutions until we find something that fits. 

Immediately upon her birth, there was some question as to whether we would still be able to have fun.  And while there are definitely some things that are different or more challenging with Tessa, I feel like we still have a pretty darn good time livin’ life.  Case in point…. the pumpkin farm:

❤️

I suppose the bigger surprise here was actually that Ellie was born with such dark features.  Today, as she was drawing in the car, she asked us how she looked as a baby.  “Kind of like an eskimo,” we told her.

If you didn’t know me as a child, you would never know that I was quite blond as a baby.  As I have gotten older, my hair has darkened considerably… and with each pregnancy, even more so.  John, too, while not particularly blond, doesn’t have the dark head of hair that Ellie came into the world with. But, now that Ellie’s has lightened up, we all kind of have the same hue.

(Our last family-of-three picture.  Tessa was born 4 days later.)

This is why, for most people, Tessa’s super-light hair color catches them off-guard. 

No, it’s not like that because she has Down syndrome.

Yes, some people have thought that.

When she was very little, I had her at the eye doctor because of a clogged tear duct that would not clear.  As she examined her eyes, she told me that the back part of her eye (?) is quite pale, and that given her super-fair skin and light blond hair, she would not be surprised if Tessa has ocular albinism.  I just laughed because her hair color is actually much like mine used to be! Over time, the back part of her eye has “normalized” and we know now that her hair is blond because, well, that’s just how she is!  Super fair, super blond, and super cute!

I missed my day by like, 4 minutes because we have fun. #sorrynotsorry

I wondered what we would look like pictures.  

(Remember when I told you that these things seem so strange with time and perspective?  I wasn’t kidding.)

Would she fit in regular clothes?  Would she smile? Would people always stare at us?  Would we always look at her and see nothing but Down syndrome?

She does rock the same clothes that Ellie wore, albeit at a much slower pace.  She smiles all the time… but only if she wants to.  Do people stare?  Kind of, yes.  But when we look at her, it’s just Tessa.  And our family pictures?  They are pretty cute. ❤️

This is strange surprise.  But then, most of the “surprises” seem that way now, given time and perspective.

Because Tessa was born pretty healthy, all things considered, we were blessed with time to bond with her immediately following her birth while they prepared a bed for her in the NICU.  We talked a lot in those first moments, trying to process the seemingly drastic life shift that had just happened.  We wondered, would one of us have to quit a job that we love and stay home with this child?  Who would be willing to care for her?  Would she need more help than we can provide?

Spoiler alert: we still work.

There are certainly challenges that come with being a working parent when your child has a disability.  Juggling appointments and therapy sessions can be overwhelming at times, and you have to learn to trust that those caring for your child are giving her the very best.  We didn’t sit in every therapy session, nor did I always get to attend every doctor appointment, but in a way, working has given me a chance to recharge my mom battery.  My kids get the best of me when I’m in the working world during the day.  I know this isn’t the case with every mother, but frazzled as I am 96% of the time, it works for us.  The ability to work is a surprise that I am quite thankful for. ❤️

In the womb, Tessa was my most active baby.  I remember feeling her squirm around very early in my pregnancy, and after that, she was never still.  Every moment was filled with kicks and rolls – at her 20-week ultrasound, our tech said it was the most active little one that she had ever tried to measure.  All day and all night, never a rest.

In the NICU, they called her “the swimmer.”  She never stayed flat on her UV light mat to treat her jaundice, kicking and flailing in her little isolette.  The hospital PT was quite impressed. 

She rolled at three weeks.

She had an amazing four-point crawl.  Still does, actually.

But walking?  No.

I didn’t know it would be so hard.  She started out so strong and I just didn’t know.

On this day last year, Tessa was not standing or walking independently.  She inched closer and closer to her third birthday and showed no sign of these elusive milestones.  And it was hard, y’all.  She was heavy and I was newly pregnant and exhausted, emotional, frustrated.

But then she walked… no, ran!  There was no walking, and then all the sudden, she took off.  As is most growth with Tessa, she pushed me to the farthest edge of my ability to not totally freak out, then broke through.  

Such is life with this child.  And I love her for it.  

When Ellie cries (which is pretty often), Tessa seeks her out, rubs her back, and tells her it is going to be ok.  She’s not particularly good at helping clean up the playroom, but she lets Ellie boss her around, sitting through book after book and lesson after lesson in their pretend school.

(We never worry about reinforcing school at home because Ellie is ON IT.)

Tessa and Ellie argue, but Tessa is quick to apologize.  She is the only person who can wake Ellie in the morning without being scolded.  She is gentle and patient when we are not.

With Lauren, she is loving and protective.  She comes to find me if Lauren needs something.  “Mom, Warren spit up.”  “Mom, Warren hungry.”  “Mom, I hold Warren please?”  She adores her.

I wasn’t sure how Tessa would interact with her siblings.  At her birth, I became quite fixated on the relationship that she would have with Ellie.  The moments in which I am the most overwhelmed are always when I feel like I am failing both girls by not being able to meet either of their emotional needs.  From day one of her life, I worried that Tessa would consume me in a way that left little for her sister – and that her sister, in return, would be jealous at best.

What I have found instead is that when my heart is pulled more to one child or the other, so too is theirs.  Ellie knows when Tessa needs more, and she gives more in those moments.  Tessa does the same.  Is there jealousy or sadness, irritation, frustration?  Of course. But overwhelmingly, they care for each other.  Down syndrome is there, in the background, but their relationship has nothing to do with that one extra chromosome that makes Tessa different and everything to do with the other 46 that they have more in common.

So surprise, healthy sibling relationships are not out of the question.  Like all relationships, they have to be nurtured and cared for, but have no doubt that there’s a whole lot of sister-ing going on in this house.