The Pep Talk I Need Right Now

We are almost a year away from when the pandemic began, for us anyway. 

My daughter turned seven on March 11, 2020, and we had a party outside in the park with snacks and hand sanitizer. Two days later, on March 13, the kids left school and were told not to come back. 

 

We are still waiting to go back. 

 

I will follow these rules of keeping distance, wearing a mask, only meeting with people out of doors. I will continue to follow these rules if it means that others are safe. 

 

But what of our children? Are they thriving or are they withering? 

 

My children had a wonderful summer. Plenty of time outdoors, working in the garden, hiking, swimming in the river, sleeping in tents—we were incredibly blessed. We even took a cross-country COVID-safe road trip to see grandparents, a much-needed respite from the reality of the new normal.

 

We’ve made it through the winter and spring is on the horizon. Patience is wearing thin, hope is shivering on the floor, and my kids must feel so alone. 

 

I need them to be back with their peers. I need them to be in the presence of life outside of this home, our family. I need them to see they are a part of something bigger than what is happening in this house. I need them to remember they have friends and people they can laugh with, share stories and smiles, people they can relate to. 

 

There is a battle raging inside of me. I want to keep my community safe, but what is community if we can’t get past our own fences? Each of us a tiny little universe struggling behind closed doors and masked faces. 

 

My humanity is screaming to be let out, and my heart breaks for my children every day they spend without their friends. 

 

How are you all holding up? This is not an easy time for anyone, especially parents of children who have unique and diverse needs. I had to take Freya to the doctor for a now persistent stomach pain. I was terrified it would be something they would send her into the hospital for and had to question if they would let me be there with her. I was terrified. I don’t know hospital protocols these days. 

 

I know that far too many of you do. 

 

Our children are probably thriving in some ways; more attention from parents by being at home, not having to transition to schedules and places outside the house. And some ways, they are withering; lack of social interactions and services, exhausted parents who are overwhelmed themselves, little stimulation or change in their environment. 

 

The list could go on. 

 

We are all living this. The majority of us are struggling. We are not alone. 

 

In a meeting for my daughter’s class the other day, the parents all took a moment to check-in. Most of the parents said, “I think my kid is doing okay, but I’m not.” There were tears and commiseration to go around. 

 

If you are feeling overwhelmed, depressed, anxious, unsure, fearful, incapable, unmotivated, sad, like a failure, etc. You are not alone. 

 

Life throws us many obstacles along our journeys, and this pandemic is a big one. But we are all experiencing this, we are all struggling to get through this, and, with help from each other, our community, and our friends, we will get through this. 

 

Hang in there! Better days are ahead. I have to believe this. 

Birthday Appreciation

Today Freya is 7.

This pictures makes me feel so many things.  I think it is the ratio of head sizes, the reminder of how small and fragile Freya was in the beginning.  All babies are small, all babies are fragile, but some certainly more so than others. 

I strive to speak and understand in a way that acknowledges everyone's path and their struggles...reminding myself and my children that though someone looks to have things a certain way, we can never truly know how it is for the person.  And of course I believe that.

But mothering a child with special needs is different, it's harder - it just is.

I say this from the experience of having two other children who are not special needs.

I don't love them any less, or Freya any more, or vice versa.  I am their mother and I love them all as deeply and completely as mother's do.

But the expectation is that my other two daughters will grow up and create their own lives, that a crucial part of their development will be finding their autonomy from me.  Of course I will always be concerned for them and offer what guidance and support they will accept (and pray they live close or at least come visit often if they move away)...but at some point we theoretically hand them the keys and hope they listened well when we taught them about driving.

And yes, Freya will also want her autonomy, will have opinions and desires for her life just as much as the other two.  But, as things are now for PWS, her Dad and I will always be the drivers.

I think of how second nature it is becoming to quietly adjust the environment my daughter is in.  Casually stepping behind her as her friend picks her up (just in case they fall over as children do), distracting her when someone else has food and it is not time yet to eat, filling in the language gaps when she talks to a friend, initiating a talking game when children are playing around her and she has not been invited in nor has the energy to get up, the nightly hour-long meal prep for lunch the next day, finding moments in whatever windows for movement therapy or articulation practice.

I spend more time thinking about Freya, what she has and what she needs.  I evaluate her actions, monitor and attune to her emotions.  I am often off to the side, silently watching her interactions with her peers, questioning and thinking how best I can help guide these interactions.  I am thinking about meals coming up and what nutrition she needs.  I am gauging her energy level with what activities are approaching.

I see my friends whose children require more also.  I see them holding and trying to soothe children who don't yet know how to be calm in their bodies, I see them checking monitors every few minutes, timing trips to the bathroom around blood sugar spikes, I see them scanning the room for sensory irritations, or quietly shifting chairs out of the path of a specialized walker.  I know they are going home and searching the internet, ordering specialized books off amazon, calling doctors and implementing whatever therapies they can do themselves.  I know they are joining Facebook groups and seeking playdates with fellow moms who can relate.  They are fulfilling the normal parenting tasks, and then they are working overtime, always.

When I look back over these last 7 years, I am sometimes shocked to remember some of the obstacles we maneuvered; the fears, the doctor trips, the tests, the fight for GH, the visits to the ER, advocating for therapies, the paperwork, all the questioning of what Freya needed...it can be overwhelming to look at it all together.  But if I remind myself that we didn't tackle all of it in one day, that where we are now has been one gradual step in front of the other, and her future will be the same...then I can take a breathe and just rejoice in how far we have come.

Here We Go...

I'm sure many of you can relate to this, the moment your child does something that you've read about in the literature of their disorder, perhaps something you hoped they would never do or experience. Then one day...it happens, seemingly from nowhere, and your first thought is, "Here we go."

I was called to Freya's school yesterday because she could not stop picking at a healing wound on her hand.  She even expressed those words herself, "I can't stop".  They went through a few bandaids, tried distraction, gave her a bag of ice and then called me for suggestions.  As soon as the school secretary started describing what was happening, my stomach turned and I thought, "Here we go".

Of course I did not have suggestions I could explain over the phone.  Years of articles, doctor visits, lists of PWS symptoms and FB posts from many other parents of kids with PWS ran through my mind.  Causes, signs and strategies all jumbled around in my thoughts competing for each other so all I said was, "I'll be there in 10 minutes."

Freya has not shown any extreme signs of anxiety so far.  Sometimes she perseverates, sometimes she picks at bug bites, sometimes she sits by herself methodically going through a stack of books one page at a time.  But none of these have ever been an issue.  As soon as I heard that she literally could not stop picking at her hand, I knew it for the anxiety I have feared.

I jumped in my car and drove to the school.  I called my husband along the way to tell him what was happening.  Guess what was the first thing he said..."Here we go".  

They (whoever they are - specialists, doctors, other parents) say that we should not look ahead too far when your child has a diagnosis of PWS.  It is one of the hardest disorders to navigate.  (I say this because I have read that parents of kids with PWS have some of the, if not the, highest divorce rate of couples with special needs children, caretakers and family members of people with PWS have incredibly high stress levels and some - especially siblings - even suffer from PTSD).  So the message is to take one phase at a time without getting too bogged down with what MAY happen in the future.

I say MAY for a few reasons - one, it is a spectrum disorder, meaning there are a variety of ways PWS manifests and to a variety of severities.  The other is the rate they are researching and learning about this disorder; it is exciting and inspiring.  I have said this before and I will repeat it every day of Freya's life as needed - one of the first things that Dr. Miller told us at our initial appointment years ago was, "there is so much hope."

I believe it is good to look into the future so that we are prepared for these moments.  No, we should not let the 'horror' stories destroy our hope, or are ability to properly care for our child and the phase they are in. But we should allow those stories to help us be better prepared for the possibilities we face with our child's future.

I know what Freya is potentially capable of because of her disorder.  But I also know what she is capable of because she is human; she is bright, motivated, friendly, caring and interested in the world around her.  If anxiety is something that we have to start dealing with, then we will do it with understanding, knowledge and, hopefully, grace.

This was not the first 'here we go' moment, and it won't be the last.  But with every one, we have come into it armed with information and awareness, even if it breaks our hearts a bit.

When I arrived at the school, slightly terrified as to what I would find, Freya was in the office with a bag of ice and a smile on her face waiting to go work with the resource teacher, whom she loves dearly.  I knew she was in good hands, and had apparently moved on from the moment.  I still gave her some Rescue Remedy, my go-to anxiety treatment (for those who don't know, Rescue Remedy is a Bach Flower remedy - totally safe and effective) and even left a bottle in the office for these moments.

The transition into first grade can be hard for some kids, especially kids like Freya.  I thought she was doing fairly well after that first week.  Perhaps she is and yesterday was a rare event.  Perhaps not and I need to be more aware of how it is affecting her and her anxiety.  Either way it is yet another reminder that this journey of PWS is not a straight, easy path.

But that doesn't mean we can't enjoy the scenery along the way.

Fear, Doubt, Questioning

Fear, Doubt, Questioning

Fear, Doubt, Questioning

I have tried to write this post three times already and these are the words that keep appearing in my writing...

Fear

Doubt 

Questioning

How do we move beyond that?  How do we, as the parents of these children who are so precious to us and need so much, how do we make the best decisions for them?  (Spoiler alert: there is no answer in this post.)

In my writing I keep trying to assess the details of Freya's life at the moment; How I am unsure if she will do well mainstreamed without an aid...How terrified I am, ultimately, to be doing so...How I watch so closely when I drop her off and pick her up from school and have yet to see a child run to her with excitement...How I see her watching these children in anticipation and her unacknowledged disappointment that they are running to each other instead of her...How excited she is to walk her little sister to the kindergarten class she was in last year, though her sister shrugs off her hugs...

How it is only day 3 and I want to yell at the gaggle of energetic children to look at her, LOOK AT HER...she just wants to play with you, she just wants to belong.

Perhaps I am being dramatic and have it all wrong.  Perhaps when I am not there the kids are trying to play with her and vie for her attention.  Perhaps her speech issues are not issues to them at all.  Perhaps her grief-filled sobs after the first day of school had nothing to do with anything.  Or perhaps they do.

Fear, Doubt, Questioning

I sometimes wonder if throwing her into the melee of 'typically developing' children is a good thing for her.  But then I ask myself, how could it not?  With a little extra help, she is smart enough.  With a little extra supervision, she can make friends.  But what happens when that little extra is not there?    

I've said it before...I miss Freya's special education teachers and therapists.  I miss knowing that I was placing her into the hands of people who have chosen to work with kids like her, kids that need extra.  The teachers at her present school have all been so kind, and loving, and helpful but...But...

Fear, Doubt, Questioning

We will never have this figured out.  This is the lesson I am learning.  We can pass over one hurdle after another, but more will always be in front of us.  Some will even knock us on our asses.  But we must always get up.  We must always keep moving forward.

For now that means pick up Freya from school and shower her with so much love and attention that she will be sure to remember there is always a place for her too.  

Put On Your Oxygen Mask First...

What do you do when the well runs dry?

I'll be honest...it's been a rough few weeks, mentally.  I unfortunately caught some gnarly sickness while my husband was out of town. I spent three days on the couch feeling as if my adrenals had been siphoned of any and all energy.  During this time I had to rely on the abilities of my 13 year-old daughter to keep the calm, cleanliness and eating aspect of our lives moving forward.  She is an amazing girl, but this challenge was a big one.  I may have recovered physically from that illness, but am still dragging ass in the mental capacity department.

I am hoping that summer, with it's lack of schedule, warm days and freedom will help revive my depleted resources.  I am hoping that with all of this I will be more patient when Freya and Rona fight over the simplest of things.  That when Freya refuses to do her Rhythmic Movement therapy, I can sweet talk her into it rather than get annoyed and walk away.  That I can declare time most days to help prepare her for first grade, practice rhyming, letters, counting, and articulation.  That when she is whining for something I can help talk her through it rather than just snapping at her in irritation.  

Parenting itself is hard and demanding and every parent knows what it is to just be done.  We all have those moments, when our well runs dry.  But when you have a child who needs more from you, who requires a better understanding and compassion of how they think and operate, and your well runs dry...then what?  How do you wade through the murkiness of constant irritation to an ability to nurture yourself, so that you may nurture others?

I don't mean to paint a dark picture.  Life here is still sweet and good and full of love and some laughter.  But I feel drained, I feel spent.  I feel as if any moment one of the little ones will start a fight with the other one and I will run screaming from the house and be half way to Mexico before they work through it.  Every question, every comment, every 'hey mama' is like someone poking at an open wound on my body.

This is not the mother I want to be.  I want to be the kind, loving, attentive and patient mother again.  I want to have the energy and focus to sit with them for art projects and games.   I want to feel inspired to teach them about our world and our lives, so they can move through this place with understanding and recognition.  I want to be the soft place they come to for comfort and sweetness.

Now if I can just find that damn oxygen mask...

A Call for Your Stories

So I'm going to kick this blog thing up a notch and start a podcast.  What?!? 

I have come up with almost everything, but a name (my daughter suggested "The Struggle is Real" but that seems to be taken...update: the name is "Walking with Freya; A Journey of Special Needs Parenting).  I have a format in mind, 3 episodes written and a strong vision of my intentions (plus experience creating a podcast - check out MEND; Life at the Seams ;-) if you're interested).  I want to create space for parents and care givers of children with special needs (young or adult) to discuss the challenges and successes openly and honestly.  I am not looking to sugar coat or fluff the very real challenges we sometimes face.  Ultimately my vision is to create a space to laugh, I think humor goes a long way to healing and moving on.  I want to create a space to cry, because that is inevitable.  I want to create a space to share our stories and to educate each other and ourselves about what our children need.  I want to create more people in the world that have knowledge about our children so they can move more freely and safely in our communities. 

We will start with the premise that ‘yes, of course I love my child with a full heart, as much as I love my other children (sometimes more) and do my best to give them what it is they need’.  As a friend once eloquently put it, 'parents can call their typically developing kids a-holes when talking to other parents, but you can't say that about a child with special needs'.  Even when they may be acting like an a-hole.  (note: if this last sentence offended you, this might not be your podcast)

Now, that is out of the way, we know where we stand and there is no explaining to be done.  So carry on, tell me about the moment you were so overwhelmed and frustrated all you could do was scream into a pillow, let’s talk about the time you were so terrified for your child fear gripped you into silence, or when the grief was so heavy you fell to your knees in shuddering tears. 

Let's giggle about that time in speech therapy your daughter was trying to say "I have a clock", but didn't quite get the 'l' sound in there, share the joy when someone tells you how special your child makes them feel, or sing the praises of the western doctor committed to reaching as many families as possible and sharing the sometimes miraculous benefits of supplements.  

I want to tell birth stories, diagnosis stories, talk about the fears and victories of being in school and having friends, the therapies that work, the ones that don't.  I want to learn about disorders I've never heard of and learn more about ones I do.  I want to expand our knowledge and our understanding of each other so that our community grows.  

To this end I am asking for people to share their stories with me.  I would like to read your stories on the podcast, names can be attached or not.  I am also a writer so please allow for any editing that will enhance the story telling aspect without changing the details or the story.  I will also be telling my story along the way and interviewing others when the story needs to be told by the person. If you are interested in learning more about my vision or wish to share your story you can email me at walkingwithfreya@gmail.com    Thank you so much for any interest and I will keep everyone posted about this project.

Kindergarten Has Begun...

...and she loves it!

My original intention was that Freya would attend school part day, picking her up before lunch so we would not have to navigate that potential obstacle right away.   Every day I came to get her she looked almost bummed that I was there.

Then I saw the PE teacher, who is also my oldest daughter's basketball coach.  He has known Freya for a few years now and so sweetly asked if she could stay all day on that first Thursday when he taught PE to the kindergarteners.  His reason; because everyone would benefit from having her in the class.  He has a slight physical disability which must give him a special appreciation and understanding for the differing abilities of his students.  I agreed with a bitter sweet ache in my heart to let her go all day on Thursday.  Of course, the night before,  I sent him a long email politely reminding him of her physical fragility (even though he was at her transitional meeting when I spoke of all of it...ever vigilant us parents of special kids).

She loved being in school all day.  One morning, while reminding her that I would be picking her up after lunch (yes, turns out lunch there is great for her) she threw a fit.  Crying, yelling, jerking in her car seat...a fit that many of my parent friends would say any kid could throw (though my oldest never did).  I calmed her down and took her into class.  When I told her teacher about it she quietly said that Freya is doing wonderfully and is welcome to stay all day.

So there it is.  Even though it is against my parenting manifesto to send a 5 year-old to school for almost 7 hours a day....I'm doing it.

There are many advantages to Freya being in school; less fighting between her and her younger sister, the youngest, after all those years of being dragged to Freya's therapies and appointments, finally gets me to her self, Freya is making friends and already speaking a little more, the food is actually more controlled because she only gets what I pack for her, there are no seconds, and I believe, she has a sense of independence from her family, and my possible over-concern for her safety, that seems good for her.

But I miss her.  And I envy those parents who say, with playful eye rolls, that their child spends an hour after school giving them the run down of every little thing they did.  I want that.  I want to know who she played with, what book they read, what art project she worked on, what they talked about at lunch, who is nice to her, or conversely, if anyone is mean to her.  As it is I only get little snippets that I have to pull out of her.  I can't just ask, "how was school?" because the response I get is 'good'.  Every time.

So, for now, kindergarten is working.  It makes her happy and the teachers say she is doing well.  But what possibly looms on the horizon is something that jars my peace of mind when I think of her future with this school.  Perhaps, as parents of kids with special needs, it is hard to stay in the moment, without a forward or backward contemplation.  We have learned, through experience, that the moment can rupture into chaos and grief in a blink; one ring of the telephone, one heavy sigh from a doctor or frown of concern from a therapist, or sometimes, even a slight relapse in our vigilance.

I will happily accept the good words from Freya's teachers, I will appreciate the positivity from her new speech therapist and take comfort in the small victories (like when she saved some of her popcorn from her snack time for me, and the teacher understood enough to not let her keep it in her backpack for fear of future food hoarding).  I will revel in the joy of her present successes, but always with a reminder of caution echoing in my thoughts.

To Mainstream or Not...

Freya graduated from her special beginnings preschool class and is on her way to kindergarten in the fall.  She will be attending the Waldorf charter school that her older sister goes to, and I am slightly terrified.  

Like so much of having a special needs child, the decision to mainstream or not is a very involved, difficult one.  Mainstreaming means that they attend class with their 'typically developing' peers.  Before having a special needs child I would have thought this sounded like great news, that the child was doing so well they could live their life enmeshed in 'normal' functioning society.  Now that I have a special needs child, one who does do quite well, I am feeling the full effect of that double-edged sword.

I am preparing to send my daughter to a school where the teachers have chosen to work with typically developing, normal functioning, status quo children, and already I miss her special beginnings teachers.  She hasn't even started school yet.  But her previous teachers have all chosen to work with kids like her, kids that take longer to process what you are asking them, or kids that need things explained with signs along with words, kids that need to see a chart of the order of events to handle transitions, kids that can't articulate words let alone sentences, kids that can't balance on one foot or even walk at all.  I already miss knowing that the person teaching my child has made the decision to give their time in this way, to these kids, and I am so grateful for them!

I'm not saying that her teachers at the new school won't be wonderful, compassionate and attentive, the ones I know are.  But do they really understand, I mean, really understand?  

I attended the 8th grade graduation of this school a few days ago and while us parents of 7th graders excitedly and nostalgically talked about next year, I thought of Freya and wondered if she would make it to 8th grade in this school.  Are they going to be able to deal with her and her potential issues?  When they sat through the transitional meeting did they really understand when I said that she HAS to have supervision around food, or when leaving the classroom.  They spoke as if eventually she would transition into being able to leave the classroom unsupervised, but I don't know that she will.  Statistically, with her diagnosis, she won't.

And what happens when they figure this out?  What happens when they realize that my sweet little 5 year-old charmer has a disorder known for its behavior problems, temper tantrums and manipulative behavior?  I'm not sure this sweet little hippie school can handle it.  And that breaks my heart and makes me feel like a shitty parent.  A part of me wishes she could stay in special beginnings for her entire school career, let's just call it what it is and accept what she needs.  But we've started this course and Freya is thrilled to go to her sissy's school.  And, ultimately and honestly, as terrifying as it is for me, I think it will be great for her. 

So I will keep reminding them the trash cans need to be emptied, I will tell Freya she can only play on the wood chipped part of the playground and not run with the older kids on the concrete, I will go on every field trip, and teach her at home what she can't pick up in class...and I will pray that she continues in life with as much grace, calm and friendliness as she does now.  

Shifting

We now have a door on the kitchen.  My daughter is 5 and a half.  I thought it would be later, when she was older, but the time is here.
I am thankful that the door has worked as a barrier not only to food on the counter or just barely empty cinnamon bottles, but also to a seemingly uncontrollable sneaking of food.
I've read the brochures, the articles on the National PWS site, posts on the PWS FB page, listened to doctors...all of it.  But still you cling onto the hope that your child will be different.  And I still have hope that she will be.  Each PWS phase she reaches I think, "Well, ok, she won't go through the next one, not so bad anyway.  She's on the less affected end of the spectrum."
And really she is.  I am grateful for that.  Freya never had a feeding tube, and while she didn't walk until after reaching 2 years old, she can now run and jump, not like her peers mind you, but she can, and does, and delights in all of her movements.  Her articulation is not the clearest and it is often a struggle to understand her, but she speaks in sentences and can usually make herself understood.  If not, she has a little sister who comes to her rescue.  She knows letters, numbers, shapes...all of the basics a kid her age should know.  She loves stories, dance parties and seeing friends.
But here is the thing, as grateful as I am that she can do all of these things, it does not mask the other characteristics, not to me.

The day we decided it was time for the kitchen door began with a red faced Freya having found an "empty" cinnamon bottle (Cosco size no less) in the recycling, getting a spoon and scraping out what she could.  All while we were blissfully asleep.  A little later, after having left the kitchen for just a few minutes, I came back to find that she had taken a pair of scissors to the bag of steel cut oats.  The slumped shoulders of shame accentuated the look of almost disbelief on her face, as if she had just not been able to stop herself, though she knew she should.  This seemed different, and far more alarming, than the few mornings before when she had eaten 4 bananas before we woke up.  I thought putting the fruit up high would be enough.

She cries for food sometimes, heartbreakingly so, even when I know she should not be hungry.  I come to pick her up from her class and, even if she is in the middle of an art project or a pirouette, the first thing she asks is if I got her a snack.  And won't stop asking until I tell her when she will eat again.
There are times now when she just seems sad, without explanation.  At these times all I can do is hold her and rub her back, telling her how much I love her, while tears stream down her face.  My daughter is different, and I think she knows this.

When we are in public and see someone in a wheel chair or walking with a cane, or someone with oxygen strapped to their nose...anything that makes them stand out to a 5 year old that always asks "what's that" and "why?", I take that opportunity to explain how everyone's body is different and some need extra help.  I now mention to her that her belly and brain will tell her she is hungry when she is not, and that she should not listen.

How do you explain to your child to not listen to something as instinctual as hunger?

Even as I write this I am remembering something I read years ago when we were first learning about this disorder.  The disadvantage of people on the less affected end of the spectrum is that they 'know' they have this disorder.  Depression is a common, and probably logical, reaction.

When I began this blog in the weeks after her diagnosis, it was to be a place to process the emotions of having a special needs child.  Also, it was to be a chance for my friends to read about my child and her diagnosis so they could know what was going on with us without me having to discuss the not so uplifting details at BBQ's and family dinners.
I mentioned to some friends recently the posts I had read on FB, the numerous laments of people having lost most of their friends as their child grew, the challenges being too much.  Now, I have amazing friends, friends who have always been supportive and loving, and of course they assured me that it would never happen to us. And I believe them.  That is how I am made, to have hope.  But a small part of me wonders in trepidation about our future; my family's, Freya's.

See, I've done the research and listened to countless PWS stories.  I know what we are up against.

Small Release and Big Love

     Just when I think I have adjusted to the emotions of having a child with special needs, when the therapies and daily injections have become such a part of our life that I no longer lament over their need; something, some nugget of compassion from a stranger, watching a video on the advances of PWS medical research, or a sudden visceral realization of a side of PWS that until then was just a checkpoint in an informational brochure, will crash into me.  Then the tears come.
     They are no longer sobs.  No, I am past that.  But the grief is still a part of my life and I realize at these times that it always will be.

It comes when watching her try to interact with peers and not succeeding as well as her little sister.  Drying her tears because, while she may not understand what is happening, she feels the sadness of being left out, of not being able to communicate well enough for the attention of a young child, because her attempt at inclusion is at times taking the toy they are playing with, or simply making a loud, repetitive whining sound not appropriate for a 5 year old.  My attention is easily diverted when we are in a room of children because I am listening, waiting to intervene because my daughter does not always play well with others, though I know she desperately wants to.

It comes when she makes known her overwhelming sense of injustice if she thinks her younger sister is getting more food than her.

It came when, because of bureaucracy and the inability of a staff worker to get the right paperwork to the right people, she was without her growth hormone shot for two weeks.  Five days into what I can only assume was a hormonal roller coaster, I held her while she sobbed like no 5 year old ever should.

It came when, in a state of feeling overwhelmed and looking forward to when free time does not require a babysitter or organizing it with my husband, I had the shocking realization that this freedom may never exist for me. That we will likely not be able to leave her alone.

It comes when she tries to talk to a stranger, or they her; the pregnant pause of them trying to understand what she is saying.  My heart breaks when her Dad and I can't understand and we either look to her little sister for translation, or she simply gives up under our repeated attempts to figure it out.
 
It comes as I evaluate her body composition, wondering if her belly is a little more bloated, if her thighs are a little bigger, if now is the time we will have to exert total dominion over every bite she takes.

It comes if I think too deeply on the fact that she can sit for hours coloring meticulously with a black pen, the sometimes too methodical way in which she reads a stack of books, the instant irritation if  someone ruffles the mat under her plate of food.

These all pass through my thoughts and yet, life goes on.  I have learned to tuck these thoughts away. I let them pass through without speaking them or giving them much notice.  But at times they must come out.  At times I must acknowledge that they exist, that this life with Freya has challenges.

Where there are challenges, there is also the deepest love and the sweetest successes.

Sometimes we are able to laugh at our misunderstanding of her words, turning it into a silly game of random sentences and laughs.

I watched in delight as she charmed every Guatemalan grandmother on the streets of San Pedro with an 'hola' and a wave.

I am uplifted by the excitement and joy with which she approaches life.  I laugh joyfully at her dance moves and the faces of hilarity she makes to give others laughter.

I indulge in the moments when she has a story to tell, one sometimes difficult sentence after another.

I revel in the absolute love and ease it is to be around her, to sit and color with her at the table or walk quietly amongst the trees.

My heart grows every time I hear her say, whether to me, her Dad or her sisters, "I love you".

Those words I always understand.