Yo soy La Lay

adventures in family, faith, and Down syndrome

Prep work

We are getting ready for our next IFSP review. If you remember waaaay back when Tessa was born, I shared that an IFSP is a document that lists all of Tessa’s “goals” for development. The first evaluation and meeting was more than a little overwhelming. Several therapists descended upon my home and spent at least an hour firing questions off about my 4-week old baby’s development…. Then, they asked me what I wanted her to do.

Um. Hmm. Well, she’s a month old, and I have no understanding of reasonable expectations at this point, so I don’t know, you tell me what she should do.

(Which they can’t, because the IFSP is a family plan – family directed. So, fellow Ds mommies, remember that. If you want speech for your child, make sure you write a speech goal. Don’t let them tell you to wait until… until whenever they say.)

I came out of that first meeting more than a little shell-shocked. And I’ve been dreading the annual review ever since.

The difference this time is that her evaluations have happened during regular therapy sessions, so there will be no barrage of questions from four different people at one time. However, I sat through each of her evaluations individually (except OT) and believe me – I have answered enough questions. John also saw his first eval ever (DT). I think it was more than a little enlightening. Now to my most stressful part – goal writing.

Since the first meeting, I vowed to never go into a review without being prepared to get what we need. At the six-month, I wrote several goals for the plan before we met and it made the meeting a breeze – I shared the goals, they wrote them down, we got all our therapies, done and DONE.

Though I know it wasn’t, it seemed easier six months ago. It also seems like I had a lot more no, she doesn’t do that yet answers on her evals this time than last. That is probably not a distorted reality. The older they get, the more checkboxes to conquer. Believe me, I’m ok with the ‘no’ answers today. My own challenge is to figure out how to best help her progress without also making myself feel like I have to spend every waking moment therapizing her (and subsequently feeling guilty when I don’t do all that I can).

No, therapizing is not a word. I know.  Can you forgive my need to make up new words so that I can share our story?  Thanks.  You rock.

She will do what she wants, in her own time. It has been our mantra since day one. And right now, we, her generally mature and responsible parents, are tasked with advocating for the tools she needs to help her do it (whatever ‘it’ is) well. So let’s hope we don’t screw this up. 😉

I’m counting on you guys!!  

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Milestone madness

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

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Lesson #20: Developmental Therapy is a thing

This is part of the 31 for 21 Blog Challenge!

Pre-Tessa, I had heard of Physical therapy, speech therapy, and even OT wasn’t completely lost on me.  However, Developmental therapy (DT) is a totally new concept.

We get DT once a month, but now that Tessa is sitting, we will increase to once a week in November-ish.  A developmental therapist is kind of like Tessa’s first teacher.  She works with her on intellectual development – concepts like “in and out,” cause and effect, object permanence, all that fun stuff.  During sessions, we play with toys and watch to see how Tessa interacts with her environment.  In the beginning, we worked on getting her eyes to track objects and to show interest in faces, then toys.  Our DT also works with our family to get us connected to the Down syndrome community.  We talk about our own emotional development, our concerns and frustrations… I don’t know if this is in her job description, but Shannon has been a bit of a social worker along with Tessa’s DT.  🙂

Right now, our major hurdle has been Tessa’s startle response.  When anyone (besides Ellie, that is) laughs loudly, Tessa displays the same kind of reaction that you might see in a child who was just given a shot.  Sweet little pouty face, big fat tears…. She has the same reaction to dogs barking.  Other loud noises don’t affect her at all.  We sit right next to our Praise Team (essentially, a band) in church and she has no negative response to the music.  When we play peek-a-boo with her, she often cries when we reveal our faces.  Some strong smells bother her as well.  I know that many people who interact with Tessa feel bad when she gets upset.  However, it’s important for them to know that we would rather teach Tessa to react appropriately than to create an environment in which she doesn’t have to deal with this stuff.

Sometimes, children with Down syndrome can have a sensory processing disorder that causes them to struggle with different types of input.  We don’t necessarily think this is something that Tessa is dealing with, but it’s certainly part of our conversation about her development.  It’s something that we will continue to work on with her DT and also in occupational therapy.

Soon, Tessa will be at four therapies a week.  Sometimes, that can feel like a lot.  Right now, two therapies (Speech/OT) are at daycare and two (PT/DT) are at home.  We just recently changed her Speech time so that I could potentially be there to help out with that.  Recently, she hasn’t been able to get through a session of speech without crying uncontrollably or shutting down and going to sleep, so we hope that my presence will help her manage her feelings better.  So far, it has worked.  I don’t know if it is realistic to think that front-loading all of the therapy will help her in the long run or not, but if nothing else, the consistency in our weekly routine is nice.  Plus, the therapists give some really great tips for working with Ellie, too.  She is more work than her sister most days!!

Still cute when she cries.

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Lesson #19: Occupational Therapy: No occupation required

The most recent addition to Tessa’s therapy regimen is Occupational Therapy (OT). Around six months, we noticed that Tessa wasn’t really engaging her hands. In fact, she spent most of her time with her hands balled up tightly in fists. There was very little reaching for objects and if she actually got hold of something, it was released almost immediately. At her IFSP review, we all agreed that it was time to add weekly OT.

OT focuses more on the fine motor skills required to function. Since starting with Kate, Tessa’s therapist, we have seen great strides in her ability to use her hands. She will reach for toys and play with them. She plays with her toes. When on her belly, she will use her arms to push up. Most of the time when she does that, she has her hands open.

We are still fighting with her left hand. She has a tendency to keep a couple of her fingers curled up when she’s pushing up onto hands and knees. She grabs more frequently with her right, using her left to stabilize her body. In therapy, we work a lot with engaging the left. Her issues are small, but on the radar.

OT is one of the therapies that Tessa gets at daycare, so I don’t have a lot of info about what a session might look like. However, Kate sends me detailed notes so that I can see how she did. Right now, just like in PT, we are working on sitting and playing with objects. We have to get Tessa to build strength in her core so that she can stop counting on her hands for stabilization. Kate puts her in a lot of different positions (belly, knees/hands, sitting, etc) and then uses different toys to motivate Tessa to reach for them. We’re also working on getting Tessa to hold her own bottle.

OT, PT, and Speech are once a week for an hour. The last therapy, saved for tomorrow, is Developmental Therapy. More on that tomorrow!

Sitting at 6 months (see the hands?!)

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Sitting now… Progress! (Also, the only happy Bears fan in the USA today)

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Lesson #18: Little babies can do Speech therapy!

This is part of the 31 for 21 Blog Challenge!

So, first of all, this happened:

photo 1 (6)Ellie was enthralled with her potty costume… Once her cousin Jimmy came over dressed as Curious George, it was over.  Somehow, Ellie convinced him to shed his costume so that she could wear it and then the two of them had a grand ol’ time pretending to use the potty.  Kids are weird.

A rough transition here…. on to Speech.

It was very perplexing to me that we could start Speech therapy on a 6-week-old baby.  However, with Tessa unable to take her bottle in an upright position, we were set up with a type of Speech therapist who specializes in Oral-Motor therapy.  Oral-Motor therapy teaches a child awareness, coordination, and strength of the muscles of the mouth (all related to that low muscle tone that we keep talking about).

(On a side note, because I know some are curious, no, my children have not really been nursed.  Ellie got 5 days and Tessa got 12.  That’s a whole other story.)

During a therapy session, we work a lot on building strength in her core muscles.  When you think about eating, you use muscles throughout your abdomen, neck, and head to eat effectively.  One of the ways that we can improve Tessa’s eating skills is to build strength throughout her body so that she will be stable when she is sitting and can begin to use her hands to move food to her mouth.  This part of the session focuses on sitting and bringing toys to the mouth.

We also work on direct input to the mouth itself.  We started by providing input with a tool like this:

We use it to teach her tongue and gums what different textures and pressures feel like.  We also work on stimulating her tongue to move around the mouth to react to food.  Lately, we have graduated to putting small crumbs of graham cracker or animal cracker on the sides of her mouth so that she learns to move the food and to swallow it.

We always end our session with feeding.  Well, I shouldn’t say always.  Sometimes, Tessa gets really mad when she doesn’t get fed first.  And sometimes, she decides that she has had enough and just closes her eyes and goes to sleep.  However, we like to do some “spoon work” with the therapist when Tessa will let us.  🙂  We have found that a forward-facing presentation of the spoon (how you or I would put a spoon in our mouth) is challenging for her, so we present the spoon sideways.  However, we also continue to work on the forward presentation.  We are teaching her to get the food off the spoon and swallow.  She also has a habit of sticking her tongue out while she eats, so we have to wait until she puts her tongue in the right place before allowing her to take a bite.  Remember that a tongue is made up of a lot of different muscles, so her low muscle tone affects her ability to keep it in the appropriate place and use it effectively.

Our next steps with Tessa are to introduce a straw cup (recommended over a sippy cup) and to slowly increase the variety of textures that she will tolerate. We have begun to work on the actual “speech” part of Speech therapy with practice mimicking noises,  We have introduced signs for more, all done, eat, and drink.

The most important thing to remember is that while we have made modifications for Tessa and we do have to make a conscious effort to teach her some skills that may come naturally to others, our life is not work.  We don’t live in a constant therapy session, always practicing, practicing, practicing.  When we can, we do these things.  That is all.  There are weeks when we do a lot of practice.  Sometimes, we don’t.  Eventually, we’ll get there.

An excellent resource that I have just started to dive into is Early Communication Skills for Children with Down Syndrome.  Click on the blue link to find it on Amazon.

Blurry, but perfect…

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Lesson #16: Babies can do Physical Therapy, too!

Our family loves (well-meaning) questions about our kiddo. We share our life with you all because we like people to understand how “normal” our life is – even though we have some fairly unique characteristics.

We get the most questions about the therapy that Tessa gets through Early Intervention, so I’d like to break down what her sessions look like for each area. Today, we’ll tackle Physical Therapy (PT).

We talked about Tessa’s low muscle tone at little bit at the beginning of this month. Because of the low tone, gross motor skills (rolling, crawling, walking, sitting, etc) are more challenging and take more time to master. On top of that, I think there is a natural human instinct to do things the easiest way possible. This can cause long-term issues, so the overarching goal in PT is to teach Tessa her gross motor skills and to teach her to do them correctly. If you remember back, Tessa started rolling at some ridiculously young age (like, 3 weeks or something). While we were so excited about this, it was tempered by the fact that she was doing it wrong. She would arch her back and roll over on her head. Not such a good long-term method.

Tessa has always been a mover. Since the first flutters in my belly, she has not stopped. One of the original evaluators actually wondered if something might be physically bothering her that was making her squirm. In the NICU, they called her “the swimmer” because of how she flailed her arms and legs.  Her motivation to go, go, go is high. So, PT is her strongest area of development. John wanted an athlete – he has one in Tessa!

During PT, her therapist works with her on her various skills. Right now, it’s crawling, sitting, and weight-bearing on her feet. To practice crawling, we physically help her move her hands (and sometimes knees) to teach her to move forward. In sitting, we do a lot of work on an exercise ball, teaching her to balance and not to throw her body backwards. She also likes to use her hands for balance when she sits, so we work to motivate her by giving her toys and objects that help her reach up and grab. She is mostly motivated by Mardi Gras-style beads and her own reflection in the mirror. 😉

Two of Tessa’s main supports in PT are her “hip helper” pants and her kinesio tape. She wears the hip helpers when she’s practicing her crawling. They are little spandex shorts that are sewn together through the legs.  She wore them for awhile when she first started EI to keep her hips from being malformed.  Now, she likes to stick her left leg out in a “splits” position when up on hands and knees and her little hip helpers keep her from doing that.

Kinesio tape is an interesting little invention. I have absolutely no clue how it works. Supposedly, it helps activate the muscles and kind of “reminds” them to work.  It seems strange.. . However, anecdotally, Tessa went all summer without it and it seemed like she slowed down. Once we were taping again in August, she has made huge gains. It may or may not be a coincidence… But I’m not opposed to trying!

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We love PT and we love Rachel, Tessa’s therapist! She has sessions once a week.  We try to practice with her when we can, mostly just through the way we play with her.  We do our best.  🙂  Up next, we’ll share about Speech!

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Lesson #8: EI, EI, ooooooh do we have goals!

This is part of the 31 for 21 Blog Challenge!

Tessa’s disability qualifies her for Early Intervention (EI).  Any child who is diagnosed with a disability or developmental delay can receive these services in some way.  Most kids would have to go through a series of tests to determine if they qualify for Early Intervention.  Down syndrome is an automatic qualifier.

In Illinois, Early Intervention is not free.  However, the out-of-pocket cost is very low in comparison to what one might pay for therapies outside of EI.  The monthly charge is on a sliding scale based on income.

Potential qualifiers for EI go through an initial evaluation to determine what services are needed to help the child.  The initial evaluation was the craziest part of the whole process for me.  A lot of professionals sitting in my living room, asking a million questions about Tessa and her birth and her progress (at four weeks old) and then asking what I would like her goals to be… not my shining moment as a mother.

What goals would YOU have for your four week old baby??

So anyway, an evaluation happens.  After the evaluation, when we have determined what the delays are, we write an Individualized Family Service Plan (IFSP).  It explains our goals for Tessa, written in a way that explains what we want her to do (and why).  This document helps direct the services that we receive.  Services received through EI must support the written goals, so it is important to write a plan that covers every aspect of your child’s development that may need help.  Here are Tessa’s goals:

Tessa will continue to progress in her feeding, be able to self-feed and eat a variety of textures and temperatures.
Tessa will begin to communicate with people in her environment (something was added
here about all different types of communication, but I don’t remember how we worded it).
Tessa will be able to sit and play without assistance.
Tessa will interact with toys and people in her environment in all of the positions (sitting, back, tummy).
Tessa will begin to move independently by scooting, crawling, and walking

IFSPs are reviewed every six months.  If we want to add any services, we have to have a meeting in which we decide that it is necessary.  John and I are of the opinion that we should “frontload” the therapy now, while we have time (ha.) and it is covered under EI.  The hope is that we won’t have to have quite as much when Tessa is older.  So, she has speech/oral motor therapy, physical therapy, and occupational therapy each once a week.  We currently have developmental therapy once a month, but are planning to increase to once a week in another month or so.  Speech and O/T both go to daycare to work with her.  We have D/T and P/T at home.  🙂

Tomorrow, more on what therapy looks like with a little baby.  I bet you can’t wait.  😉

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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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The State of Our Union: July, 2014

Midway through 2014…

What?

Seriously, when did that happen?  Our lazy days of summer have been very, very good to us.  With the Fourth of July holiday now over, I can already feel the itch to get back to school.  Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already.  🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids.  I’m not offended if you don’t care much about John and I.  🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!).  As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week.  Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough.  Maybe not the hiking… no part of me is a hiker.  But we did it.

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Why buy a card when you can just show one to your husband in CVS for free???  🙂IMG_5746

John is loving every minute that he gets to play with his girls.  Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are.  He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs.  I’m so proud of him!  And, our team is in first place for the amount of money raised.  I can’t wait for the race!!  Team Tessa will be out in full force!

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I’m settling into a new position at work this summer, which has been a (good) whirlwind.  I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids.  My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her.  She’s smart as a whip and fiercely in love with all things Frozen.  We have seriously watched the movie at least 5 times a week for the last month.  Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward.  Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors.  What a blessing! 🙂

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There is no filter on this picture.  Those eyes are going to break hearts someday….IMG_5778

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development).  She is almost seven months old!  Her occupational therapy evaluation was yesterday as well.  On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!!  However, she is struggling to use her hands to do more than swat at toys or put things in her mouth.  When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range.  So, going forward, we’re going to add in occupational therapy once a week.  We have to work on her core strength.  It’s difficult for her to do much of anything until that tummy strength improves.  It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now!  As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.).  In true Tessa form, as soon as she heard her DT say this, she started to improve.  I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa.  She seems to be indifferent to it really.  Can I also mention how much easier it is to do things like start solids when you just have one child?  I don’t know why, but we have been really inconsistent in feeding Tessa at the table.  Weird.  Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out!  While we can’t always tell if she is interested in more or not, she will let us know when she is done.  With great joy, she spits it all in our faces by buzzing her lips.  The joys of parenting…  I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)…  She sleeps well, is now eating well and provides great balance for us and her goofy sister.  She is such a great addition to our family!

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As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now.  Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on.  For now, I just want to say thanks.  If you are reading this, you have been a part of this… of us and we can’t thank you enough.

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Let’s Clean House!

So today I am wondering if my house will ever (EVER.) not look like this:

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To the left, you will see our “therapy bins.” Think that sounds fun and interesting? It’s actually all the junk that accumulates in our downstairs living space week-after-week. We call them “therapy bins” because every time Tessa has a therapist coming over, we throw everything into a bin and shove it into our master bedroom.

We have seven very full bins.

Did you happen to notice my half-painted toenails? The ones that I have been planning to paint before every one of the three road trips we have taken since Father’s Day? Someday…

On the bed, there are stacks of clothes that will surely find themselves piled on the floor at bedtime tonight. And then, we won’t know what is clean or dirty anymore, so they’ll probably get thrown back into the wash just because.

On the plus side, I did manage to mop the bathroom floor for the first time in…. for the first time.

The strangest part of all of this is that we are not busy people right now.

A couple of weeks ago, my husband asked me if I wanted to spend two kid-free days cleaning our house in celebration of our five-year wedding anniversary. While I’m sure that the most practical answer to that question would have been “YES! What a fabulous idea,” my response was something along the lines of “only if you want this to be your last anniversary. Ha Ha Ha.” I just don’t want to give up quality time to clean! While I really do enjoy a sparkling home (I think… It’s been a long time so I’m not actually sure), I enjoy living with my family more.

When I took Tessa to have one of her first blood draws, there was an elderly lady in the waiting room who was totally drawn to her. She told me “Don’t go home and do your dishes. My kids are in their sixties now. I can’t hold them anymore. I don’t remember the days that I scrubbed my floor or vacuumed. I remember the times that we played games or went for walks. Do those things.”

And so I am.

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