Living in “Not Enough”

I’ve spent most of this afternoon/evening crying.

Daily PhotosThis sweet kitty came and snuggled me all on his own initiative.

I’m okay…..well, I’m not okay but I’m sure I will be and it’s not the end of the world…..I’m just tired.

Well, I don’t like that either, because I’m not “just” tired.  I’m exhausted.  I’m wasted.  I’m trying…..

I’m trying really, REALLY hard.

I’m trying to hold myself together.
I’m trying to hold my boys toge……………

I edit myself all the time.  I figure that you must be as sick of hearing “all that I have to do” as I am of thinking about it.

And yet, every  time that I hit “POST” someone leaves a comment or sends me a message or tells me later, that they don’t feel alone, or they “get it” a little bit more,or that they had no idea.  All of that….it brings awareness.  It helps to create community.  And community is especially important for our parents/caregivers within the special/high/complex needs community and that’s why I continue to write and overshare.

I know that some people look at me and think that I have it all together.  Ha Ha Ha ha!

I would NEVER claim to have it all together.  I am a hot mess, sometimes presented fairly nicely, with overly done make up and enough hairspray to make my 90s’ self proud. Sometimes I’m rocking the greasy hair, messy bun with yesterday’s yoga pants and baggy shirt, all rounded out with lipstick and shades…….like putting lipstick on a pig, right?

I wish I was perfect…..well, not really but I wish I had a house cleaner and maybe a nanny.

I might be a little more sane, if I had that…..but I don’t and so I do what I can and often…..always…..that’s not enough to be perfect.  Mostly, it’s just not enough.

I struggle with the fact that I may be judged for my children’s inability to self-regulate like lots of kids can.
I struggle with my inability to do everything that I want to do.

I struggle with my inability to do things that I feel others think I should be able to do.

That last comment is a huge issue for me……. I tear up writing it. I tear up re-reading it.  It’s where I’m stopping today……why do I place so much weight on what “people” may think of me…….

Maybe this is why I feel so strongly to advocate and champion for kids with invisible disabilities; and for understanding and compassion for all!

The fact of the matter is…..I am disabled!

Definition of disabled

1 a : impaired or limited by a physical, mental, cognitive, or developmental condition 

I look healthy and for the most part happy and well rounded BUT…

I am limited in my physical and mental abilities.  Not cognitively, although the “brain fog” from stress and exhaustion is a real thing.  I have HUGE amounts of empathy for people who have Executive Function Issues and even Brain Injury because…….I used to be extremely capable of an insane amount of organization and administration. With all the stress and trauma we’ve dealt with over the past decade (its been over a decade), everyday I walk around saying, “Why am I here and what was I going to do?”  I walk around in this “fog” where I can be talking to someone, and suddenly realize that I have no idea what I was talking about…’s gone.  That too happens, daily.  Some days its better and some it’s worse.

There are things that I can’t do from an emotional energy standpoint and even from a physical energy standpoint……and its hard…..because I look like I am okay.

And every time, I have to say that “I can’t”… it feels like a punch to the stomach.  I can’t do a school project with my kids. I can’t go on a field trip. I can’t run to the grocery store for a quick pick up. I can’t make that phone call. I can’t type that email. I can’t do that laundry. I can’t clean the way I want to. I can’t…….

Can you imagine?  If you can’t… yourself extremely blessed.  I don’t begrudge it of you.  I used to be you.  You are blessed. Please don’t take it for granted.  But Please… do have compassion for those who may not be able to.

If you can imagine……know that I get it.  To some degree, I get it. I get that there are things you are good at and things you wish you could do. I get that there are things you CAN make happen , but it comes at great cost and sacrifice to your (and your family’s) well being. I get that there are things you just CANNOT MAKE HAPPEN.  And I get that it sucks.

If you’re struggling, know that you’re not alone. It’s hard.  Know that it’s okay to have the good days and to celebrate them; and to have the bad days and to hate them. Know that a good morning can turn into a bad afternoon or vice versa; and that every day starts anew with new possibilities.  Know that it’s okay to be filled up with sadness, and even to sit with it for a moment, but that you need to let it go to make room  for something else. Be easy on yourself and extend grace and compassion to yourself.

Judah wondered why I was  crying today and I told him that my heart felt overly full of sadness and crying was helping to pour some of the sadness out.  That I was making room for other emotions to come and fill me up.

I think I’ve emptied enough sadness out and I’m going to be careful with myself over the next few days and do things to help fill me up.  Tomorrow is a “Mental Health Day” for me and my littles. I’m looking forward to it.




Who will YOU see?

I cannot be happy enough to see 2017 close it’s doors.

I had thoughts that this year would look so much different. And while this year and its events have kicked my butt…..there were good things about it, I’m pretty sure.

I can’t think of too many at the moment, because of the severe brain fog due to mental exhaustion and stress.

Between the spring and the issues surrounding Jeremy and the High School; between the summer and all the fighting between my boys; between this fall and finding out that my baby has perceived trauma due to being a sibling of autistic brothers, to school refusal, complete out-of-your-senses panic, and therapy……lots of therapy; between helping one child feel safe within his school and with his teachers to advocating that they see the person and his strengths and not get sidelined by the “side effects” of his disability; from moving my babies into their own home; and doing so much more with my own creative endeavours, than I ever thought possible……’s been too much.

Many things and many people have been set aside as I try to survive. There is no thought of thriving and I’m eternally grateful for the opportunity to escape into art and creativity……because that small part of my life means that I’m not lost.

I’m not lost to chaos.

I’m not lost to meltdowns.

I’m not lost to advocating.

I’m not lost to lack of knowledge or understanding.

I’m not lost to special needs or trauma.

I’m still me.

But me…….
I am exhausted.
I am barely treading water.
I am in a tough space.

I like to say that seasons change and I know they do. I believe that I have more strength than I realize. I believe that I am capable of handling a whole lot……I know this, because I’ve had to.

And yet, I’ve never been more closer to giving up.

I’ve NEVER been this weary.
I’ve never wanted this badly to run away from everything and everyone and never be found again.
My sense of responsibility has been taken to the end of itself.

To. The. End.

Physically, I’m tense, like muscles in knots, headaches and migraine, tense. I can’t sleep. I’m exhausted. I can’t focus. I have to write lists to accomplish anything. And even then, I stare at my list with a blank sense of uncomprehension. I see people doing human things. Regular things, like going for coffee or a walk or popping out to the store to pick something up…..and I can’t even fathom how that’s a possibility for them. It’s Herculean effort to exist.

Do you understand?

Can you even comprehend?

I share because I know I’m not alone. I know there are others out there who feel like this and blindly and stumbling keep putting one foot in front of the other, not knowing how but knowing they have to. Doing everything in their power to reserve the strength that they don’t have while pretending, as best the can, to deceive themselves into carrying on because there is no other choice.


I am walking away.
I’m taking my crazy with me and we are all running away. We will put our toes in the sand. Pray for sleep and regulation. And hope that we can recharge in the sunshine and the water.


But there are many, like me, done. Tired. Exhausted. Worn out.

Look for them.
Find them.
Love on them.
Let them know you see them.
Let them know you love them regardless of their ability to give back.
Let them know in a tangible way, that you see them – that you care.


Some ideas: (in no particular order)

– Take a meal
– Give a Gift Certificate
– Drop off a coffee and donut
– or a bottle of wine
– take a kid out for a treat
– clean a bathroom
– clean out their vehicle
– give flowers
– offer to watch kids
– do a 10 minute tidy
– ask how they are doing, really listen and be okay with a hard reply
– connect and say hi (by text or email) and don’t expect a reply
– send a card to say you’re thinking of them
– learn about what they are dealing with (autism,ABI, ADHD, TBI,
DS, FASD, trauma, divorce, addiction, mental health, cancer, grief, etc)

There are so many ways to connect without putting more pressure on ones who are already tapped so far beyond what’s emotionally possible.

This holiday season, I’d love to challenge you to “see” someone, to hold their challenges with respect and reverence, and to be a support in ways that are meaningful to them.

It may mean being okay with the messiness (emotional, mental, physical and/or spiritual) that often accompanies our lives.

But it will be worth it! I promise!

A Small Dose of Saturday Morning Trauma

I got a call about 10 o’clock this morning. I could hear Siah screaming in the background. Jon hollered at me over the screaming, “I need you to come and get Siah.”

Not even finished my first cup of coffee and hair and make up not done…..I raced out of the house and down the street to our dentists office.

I walked in the door and they ushered me to a back room where I found this.

Good Saturday morning to you too!

Nothing like a spectacular dose of trauma to start the weekend.

It’s dental work. My boys needed fillings. How simple is that? Go in, get it done….BAM!

Not that simple.

I sat in the recovery room with Siah and listened to Judah screaming through 2 closed doors.

It’s hard to think straight when your world feels torn to shreds by trauma. When anxiety overwhelms to the point that nothing makes any sense. When trauma tells you that you are in terrifying danger. When you brain lies to you and it doesn’t matter because you can’t think beyond this exact moment of terror.

Siah was curled in a ball, yelling and screaming at me for letting them hold him down. He was so upset that I couldn’t even touch him or comfort him.

In the end, it’s more traumatizing for us because now that they have settled and the meds have worn off, they don’t even really remember what happened. Yay for the meds actually working.

I say that as sarcastically as I can because I was called there…..without the benefit of mind numbing meds, to witness and experience it all. To be hit and kicked, in fear. To be rejected and not allowed to give comfort.

As soon as he settled some, I traded off with Jon to go and see Judah, who was terrified, mostly because he heard Siah panicking. And being unable to see what was actually happening….he assumes the worse.

Siah actually finished his dental work. Judah wouldn’t let them near him…..even cracked out on meds.

We made it home eventually.

We’ll have to cough up the insane costs to have Judah sedated to actually get the work done.

Anxiety sucks.

Watching someone you love suffer from anxiety is brutal.

Experiencing anxiety is brutal.

Can I encourage you to have compassion for those you know who deal with mental health issues?

I’m gonna get up tomorrow, put make up on and go and sing my heart out. You’d never know what I experienced today by just looking at me…..and I’m not looking for pity.

Compassion and understanding though…..definitely. Especially when my boys are acting out and I have nothing left to give but I dig deep and create energy out of nothing.

But my sharing is not just about me. Be kind and compassionate to those parents and kids you know who struggle…….you have no idea what they really are going through and I guarantee you they won’t share the reality.

It would be too much to handle.

It is too much to handle.

Dear School System…..

To the School System,

This year has been an extremely tough one for our family.

I’ve been a parent in the School System for 15 years, and was a student, myself, for 13 years (K-12).

I had no issues.  I found school to be easy….probably too easy.  I definitely didn’t try hard enough and still got mostly great marks.  Sure, I re-did Math 10 (3rd times the charm, right?) but I didn’t care one bit about sin/cos/tan or graphing.  Never have used it.

I believe that over the past 11 years, my sons (and I) have been repeatedly traumatized by the School System.

I understand that is a weighty sentence, but I fully believe it to be true.

Trauma is described as a deeply disturbing or distressing experience.  It doesn’t have to be a death or violent event for someone to perceive a situation as traumatic.

Complex trauma is:

  • Chronic
  • Begins in early childhood, and
  • Occurs within the child’s primary caregiving system and/or social environment

Typically, complex trauma exposure involves the simultaneous or sequential occurrence of child maltreatment and may include psychological maltreatment, neglect, physical and sexual abuse, and witnessing domestic violence.

Exposure to these initial traumatic experiences, the resulting emotional dysregulation, and the loss of safety, direction, and the ability to detect or respond to danger cues may impact a child’s development over time and can lead to subsequent or repeated trauma exposure in adolescence and adulthood without supports that might buffer the negative effects.


I have two sons that have experienced repeated distressing and disturbing experiences within the school system.  They both have a diagnoses of Autism Spectrum Disorder, Anxiety, ADHD and Learning Disabilities.

Cognitively, one son is average and the other is superior…..that also brings in another layer of complexity.

We have fought on behalf of our boys, for the last 11 years.

There has been misunderstanding of their specific disabilities and needs.
There has been mistreatment by well meaning but un-informed teachers.
There has been GROSS misjudgment of stress behaviors.
There has been repeated segregation, alone, in medical rooms.
There has been denial of child specific supports as defined by diagnosis.
There has been brutal bullying with no consequences for the bullies.
There has been denial of access to opportunities because of disability, with no support.

There has been repeated emotional and mental trauma which has also resulted in physical strain on both of my boys.

It doesn’t stop there.

What affects my boys, effects our entire family.  Our family of 7 is precariously balanced on the best of days….Neuro-Diversity, and Mental Health are tough loads to carry.  Throw in any mental and emotional upheaval and there is no balance….we come crashing down.

My boys are resilient in the fact that, they get up every morning full of anxiety for what the day will accost them with.  Every social interaction is fraught with anxiety; and requires that they must decode idioms, expressions and body language.  This “social language”, that we take for granted, is foreign to them; and they struggle with learning it.  Not because they don’t try or  want to understand, but because they have a neurological difference that makes it difficult to do so.

EVERY DAY is filled with stress…..with anxiety……with sensory overload.

They don’t get a break from it.

And yet they carry on.

My boys keep walking into your schools EVERY DAY knowing that at some point they will be mentally, emotionally, or sensorily assaulted.  Maybe not on purpose, but it happens just the same….

If I slam your hand in a car door by accident and then apologize, does it make your fingers any less broken or painful?  No, the trauma is still there.  Imagine how you would feel, if people repeatedly slammed your fingers in doors.

You’d probably end up extremely jumpy and tense; and mistrustful of those around you.  It doesn’t matter how much they seem to like or try to understand you, “survival brain kicks in and reasoning and logic shut down.” In fact, you’d probably not want to go where people and doors are.

But everyday, my boys continue to enter your doors, and try again……it’s insanity, really.  And I feel like I’m perpetuating the insanity….the trauma…. by encouraging them to continue to “go and trust”.

They are so very tired.

And I am so very tired!

  • I am tired of holding them when they come home crying because someone misunderstood their diagnosis and their heart.
  • I am tired of fighting every year to say the same thing and not being heard.
  • I am so very tired of being seen as someone causing conflict or someone on the “other side”.
  • I am exhausted from scraping up a weeping child who has been judged incorrectly as defiant or non-compliant.
  • I am exhausted from dealing with meltdowns as a result of pressures placed on them at school, to live up to “typical” standards.
  • I am so very weary of encouraging my children to go back to their teachers and EA’s to work “issues” out, when I believe that my child is being hurt (however unintentional) as a result of lack of knowledge and understanding.
  • I am angry that I have been fighting for 11 years for people to “see” my children….to see beyond the the stress behaviors and see their heart.
  • I am so exhausted  and traumatized from the past 11 years, that I cannot even fathom continuing to advocate for my children.  I cringe at the very thought of connecting with the schools to advocate on behalf of my boys and yet….. I must advocate for them because I am SO concerned for their mental and emotional well being, in regards to their care and treatment within the school system.


Dear School System,

How can we change this?

How can we affect change within our school system, so that children like mine are not traumatized on a daily basis?

How can we affect change within our school system, so that children like mine are recognized for the value they bring?

How can we affect change within our school system, sooner rather than later?

  • Do our children have the right to access a place where they can be encouraged to love to learn?
  • Do our children have the right to have the same opportunities as their “typical” peers?
  • Do our children have the right to access safe places, mentally, emotionally and physically, to learn and grow?

Right now, this is not the case….my children (and many others) are not being taught, trained  and encouraged in safe and meaningful ways, within the School System!

How can we fix this? How can we work together to accomplish this?

ps. It is not my intent to disparage any specific teachers that my sons have or have had.  I feel very strongly about the brokenness of the School system, specifically in regards to special needs children.  I feel that there is a HUGE lack of knowledge, in regards to working with children that are Neuro-Diverse.  I believe that there are a lot of teachers and staff are that are well-intentioned but unfortunately, unknowledgable regarding neuro-diversities.

There is a WEALTH of information available.  I’d strongly suggest Stuart Shanker’s Self Reg as a great starting point….not only to aid with Students but also with Teachers and all School System Staff, in dealing with their own stresses.



I went to another counseling session this morning….and then I came home, ate lunch and crawled into bed until I had to pick up the boys from school.

I’m currently chatting with some friends on the Facebook messenger app….I’m having such a hard time focusing on this and yet, I want to be able to write it down because when I do…..I feel like I process through it and assimilate the info, so much better than when I kind of ignore it and carry on.

PhotoI feel like I’ve been fighting myself. On one hand, I think I’m good at certain things…..but on the other hand, I don’t really believe it. For example, I believe I am beautiful; but instead of just believing it and it being a non-factor…..I’m constantly needing to “be” perfect…even though I’m no where near perfect. It’s always something I’m reaching for or trying to attain. And if someone says anything to me….I honestly believe that they are just being nice…because somewhere inside of me, I don’t really believe I’m beautiful…..but I do….???

I think I can sing well, and yet…I don’t really believe it, because if I really was good, then wouldn’t I have actually “done” something with it. And yes, I can carry a tune, but so many are so much better than me, and I’m not really that good……..I’m just…adequate.

So, in counseling today, I managed to connect with a much younger me…from about when I was 6….and she quite honestly believes that shes bad……dirty and disgusting and bad…..and I don’t know why. She believes that if anyone really truly saw who she was that they would reject her……..and that just so much resonates with how I feel.

It’s weird. It’s weird to hear yourself say things like……I see these kids. These kids that others see as “bad” and I see beyond the “actions” and “issues” to the heart and soul of the kids and I see how special and amazing they are.

It’s so devastating to see that as a young girl, maybe 6, that I felt like if anyone saw the real me that they would reject me, because I was so bad.

I don’t know what happened to make me think that. I don’t know what would have given me that impression, all I know is that for the first time…..something makes sense…….its like something inside of me has held onto something horrid for 30+ years and I can finally recognize that it’s not the adult me feeling like this. Even saying this (or typing it) makes me feel crazy and yet…….it just feels so “right”. I said things today that totally make sense for the first time in 30+ years.

If there is a part of me that was traumatized by something and held onto that trauma and never quite grew up….it could easily be causing a disparity between what I know as an adult and what I felt as a child.

The feelings were so strong….at first I didn’t even want to connect with her.

I’m quite unsettled sharing this, and yet…..I want to. In some ways, if I share it, it becomes more real to me.

I find our minds to be so very, incredibly interesting.

Its so hard to switch from what we know as an adult to what we feel/felt as a child. And yet to recognize that what we felt/observed/experienced is still valid regardless of what the actuality is/was…..

For whatever reason, I felt like I was unworthy of love. I felt disgusting. I felt bad. I felt like, if anyone saw who I really was, then they would reject me. I felt like I had to continue to try to appear perfect, in order for people to accept me. I felt like failure was equivalent with rejection. I’ve continued to feel that in my experiences with people, all through out my life. It sucks.

In a lot of ways, it feels like I can’t trust myself. How do you merge these two “warring” sides of yourself? One side believes that you actually are a nice person worthy of love and acceptance; and at the same time, a part of me truly believes that I’m one slip/one step/one action away from being rejected because I’m so “bad”.

How is a 6 year old “bad”?

I can’t imagine looking at a young child and believing them to be truly evil.
I can’t imagine looking at my young children and rejecting them based on their actions.
I can’t imagine my children feeling so unacceptable and undesirable.

It just about destroys me to think that I felt like this….and yet…..I can’t remember not feeling like this and the feelings today were so intense……

It made me feel so sad for myself.

I hurt so incredibly much for the children that I see who are struggling. My own children, my nieces and nephews, our friends kids……..children at our local school….., at church….

So many of these, I’d venture to say ALL of these, kids just want to be loved and accepted, and they should be….in spite of any actions that people deem inappropriate….Sometimes, I just want to scream at the “adults”. I want to scream and rail at them, “can’t they see that these kids are trying their hardest?” They are doing the very best they can. Children want to do their best. If they are struggling, it’s probably because they don’t know what to do….and helping to teach them what to do (as opposed to focusing on what they are not to do), with love and compassion would go a whole lot further than getting angry with them.

It was a weird appointment, and I realize that I’m a bit all over the place….but it’s been a tough day.

I’m attempting to process through this. I’ll probably have more thoughts on it all, but at least I’ve started….

I’m trying to be ok with being in process….I like to start something and wrap it up and “finish” it…..but I think it needs to be ok to be “in process”….to be “working on things”….to not have to feel like if I don’t finish it right away that it’s useless or worthless….but to realize that I can start working on something and continue to work on it and that it’s ok to not be finished yet…..


In Process…….

I had a counseling appointment this morning. While driving there, I tried to “check in” with myself… see how I was doing. How I’d been feeling since my last appointment? Less Anxiety, More Anxiety…Whatever…and as I attempted to “connect”…I found myself shutting down.

Whatever I was trying to connect with or process seemed too great a task and it was as if a huge cement lid was slamming down on top of whatever I was trying to connect into…..I guess, myself…

There was a song on the radio that I liked and so rather than fight against myself…I sang along with the song until it was finished and then I tried again……

Quotation-Jeanette-Winterson-time-Meetville-Quotes-8822I knew I had thoughts and feelings and yet…as I reached inside myself…once again…I shut down.

By this point, I was mildly frustrated and so I tried again…and there was nothing. Brief lines from popular songs flashed through my mind, filling it with meaningless drivel;but I couldn’’ seem to grasp a hold of one concrete, valid thought.

I became aware that this is something I do…..often.

I have so much to think through and so much to deal with and it’s been SO LONG that I’ve been living in a state of heightened stress…at some point I shut down in an effort to not “break” and now it feels like this coping mechanism has crippled me.

It’s possible that my life experiences may also have “broken me”, were I to have fully embraced them all as they came……but I didn’t…

And now…….

I walked into the counselors office and sat down; and chatted about trivial things not pertaining to the matter at hand and then I brought it up.

“I shut down. Often. And I don’t like it.”

It’s kind of like the whole “building walls” analogy…..You get hurt by people, so you start to build walls to protect yourself; and eventually you end up alone inside your great castle, and that loneliness hurts even worse than the possibility of hurt from letting people in…..

I shut down emotionally because my experiences were too great a pain to bear.
I’ve experienced too many intensely hurtful things.
Shutting down has become instinctive and not a choice.
Now, anytime I attempt to work through something that feels the slightest bit “intense”, even if it would be a positive thing…..I shut down and cannot think straight enough to make sense out of any of it.

It’s frustrating.

It feels shameful because it’s something I “should” be able to do.

I laughed when I said that, because I know it’s a fault of mine…..this belief that I should be able to do anything and everything……that I should be in control at all times….that I should be capable to handle anything and everything that comes my way, with no signs of weakness…..How’s that for holding myself to impossible standards?

I feel angry because I don’t like feeling powerless and out of control.

It takes me back to the days that Nathaniel died and was born.

How do you process something like that? How do you carry a baby for 25 weeks; and plan and dream about and love the being that you are growing inside your very soul….how do you cope with having that piece of yourself taken from you? How do you walk away from your heart? How do you deny everything that your gut is saying to you to leave him when you know they will put his body into a cold freezer and yet you must just walk away and leave him there…..where no one loves him….where no once will or can care for him…..

You don’t….you shut down because those thoughts will destroy you…….


My baby died. I can’t even fathom it, and yet I lived through it….I think those are the wrong words, though. I carried on. I kept on going. I shut down and gave birth to a beautiful baby boy. A little boy who was the perfect size for his age. A little boy that they could not find anything wrong with. There was no reason that we know of….he was not sick or broken. Just dead.

Even writing this I seem to flash in and out of these feelings of grief. Shut it down….feel……it’s too much….It’s TOO MUCH… many tears….so much sorrow held for so many years….He would have been 11 years old this year.

I held him for such a brief moment. I didn’t know what to do and neither, it seemed, did the hospital. I have so many regrets and so much anger inside.

Why didn’t they ask if our families would like to see him?
Why didn’t we call our families in? It would have been so much more real, then….
Why didn’t I hold him to my chest and sob as if my heart was broken into the million tiny shards that it was?
Why was I so scared that holding him was the wrong thing to do, just because he was dead?
Why didn’t the hospital walk us through more….better….with details….or information……or something?

I can’t have these “why’s” answered…..

I’ve existed, laying these “why’s” down because I knew there were no answers to my questions…..but what I have not realized was that in being “logical” I was dismissing or down playing the validity of my emotions…I was shutting down…..

It’s ok for me to be upset that my baby died.
It’s ok for me to be upset that my baby died without a reason.
It’s ok for me to be angry that we were not “helped” along more by the hospital.
It’s ok for me to feel sad that I didn’t hold Nathaniel and cuddle him as much as I would have liked to.
It’s ok that I feel shameful for not knowing what to do……How could I have known?
It’s ok that I feel so many “regrets” because I can never go back to that moment…..

I walked away from the hospital feeling more alone and broken than I had ever felt before in my life. I remember standing in the elevator wishing that I were dead. Wondering if I was, because it wasn’t possible to simultaneously hurt this bad and yet feel nothing.

I felt dead. But I knew because of how badly it hurt to even breathe, that I was so very alive and that I had kids to take care of and that life had to go on.

We came home to an empty, still house…..mirrored by my own emptiness. We walked upstairs to the main floor and I remember hugging Jon, and crying. I felt so helpless… out of control……and so desperate for another baby……a living baby.

When I think back to that time…..there are a few things that I remember “doing”…..I don’t remember “feeling” anything other than desperation for a baby to love, to hold, to fill the empty places inside of me……

Siah was born 3.5, very long, very loss-filled, very traumatizing, years later.

quote_resources-for-recovering-resilienceI don’t know how you make it through an experience like that without shutting down. Obviously….because I didn’t……..

Now how do I move forward….that is my question…….

I don’t want “shutting down” to be the first thing that I do when faced with…….

Because I want to “really live” with authenticity and transparency and passion; and not just exist……

I Should Be Used To This By Now

Siah Today
Bear Boy
We have an appointment with Dr. Corina Brown at the Fraser Valley Child Development Center tomorrow morning to have Josiah assessed.

We will most definitely be asking about autism.

We pulled together all the reports we have for him so far…..He’s only 7 and yet, he’s seen a Psychologist at the Infant Mental Health Clinic at BC Childrens, OT’s through school, our Pediatrician……and we wrote our own list highlighting the areas that he struggles with or in…..

4 pages of struggles.

Josiah Issues

(not sure why but to see the page you need to clink on the link and then clink again on the link that opens.)

This journey of parenting special kids is a tough one.

I don’t know if we are going to get a diagnosis of Autism. I’d like to think that we, as parents, know something about our kids and there are SO MANY flags that go up for me when I look at this list and see this sweet kid….but I’m not the psychologist. I don’t make the diagnosis.

I do know that he’s struggling. His teacher knows that he’s struggling, but she doesn’t know how to help him.

Listing out 4 pages of “issues” and “struggles” and “deficits” is tough.

I’ve reduced Josiah to the sum of his faults.

And yet I haven’t………I know that in order to accurately present the challenges to someone, you need to talk about the hard things. The struggles…..the areas that are difficult….and you’d think that I’d be used to this by now. This is the third child that we’ve had assessed and probably the one I’m most prepared for. In every case, you go in and present the areas of greatest struggle. Because you’re not there to talk about the areas that they succeed in. You’re not there to talk about his sweet soul or his gentle, caring nature.

You’re there to talk about all the ways that fighting with his struggles sucks the soul out of you. You’re there to talk about how exhausting it is for both you and him to “live” on a daily basis. You’re there to talk about the incredible amount of effort that is required to stay one step ahead of every thought and breath so that you can avoid the inevitable meltdowns. You’re there to talk about how much effort every day is, in regards to getting dressed, eating, going to school, coming home from school, playing after school, eating after school, doing homework, eating dinner, doing chores, doing the nighttime routine, going to sleep……EVERYTHING!

And you know somewhere in yourself that parenting a child isn’t supposed to be like this….it shouldn’t be THIS MUCH EFFORT….it shouldn’t be something you dread. It shouldn’t be something that requires every ounce of strength you have and then some. There should be some space in your life left for you……….or your husband…..

But there isn’t…..

But, you can handle it….sort of….which makes you question everything you think and especially everything you wrote down. Maybe you are just blowing it out of proportion. Maybe you are making it seem worse than it actually is, and just then……..your child melts down……..and you take a huge breathe and push away the panic that threatens to choke you. You ever so calmly, and with so much more grace than you feel, respond to the situation…….

The second, third, fourth guessing is what does me in…..

I’m taking my 7 year old in for an assessment. He’s already been seen at BC Children’s when he was 5. And we know that there are deficits in his social development. He is a lovely, sweet boy. He is also struggling. This is not just about me. This is about getting him the help that he needs. And if we benefit because he gets that help…..that’s a good thing right?

I should be used to this by now. But I’m not. It’s hard. It’s hard to see your child struggling. It’s hard to face the areas that your child is struggling, head on. It’s hard.

One more day and then it’s all out of our hands………..I just need to keep breathing.

It’s hard.

#microblogmonday 8

So I had this bright idea that I could get up early and go for a run before I would normally even get up…….I’m not entirely certain whether it was a genius idea or the stupidest thing ever.

I hate mornings…..with a passion.

My little boys need to be at school at 8:35am. I consider it a win if I crawl out of bed before 8am.

I try my hardest to do EVERYTHING the evening before: lunches packed, backpacks packed, outfit picked out, coats and shoes ready to go…..

That way….we get up, get dressed, brush teeth, eat breakfast and head out the door.

When I run, I typically do so after I drop the kids off at school, but I find that “the morning” is taken up by eating breakfast, checking social media, dawdling around….and then there is the post run shower and by the time that’s over, it’s almost noon.

I figured that if I didn’t think about it too hard and got my running gear ready to go…..I could POP out of bed at 6am and run for half an hour and then still have time to shower and be available to help the kids by 7am.

That’s a whole extra hour than I normally have…….it’s got be to a good idea, right?

I went to bed at a decent time and managed to sleep for 7 hours – Yay me! The alarm went off at 6am and I’ll be honest…..I did not just jump out of bed. I really contemplated not doing it but finally jumped out of bed at 6:18am.

I threw my gear on and was good to go for 6:26am. Yay me. It wasn’t as bad as I anticipated but it wasn’t the same as running during the day or in the evening when I’m more warmed up and limber. I’m still running really slow and taking it really easy since the whole “shin splint” episode. Things are slowly getting better and I’ll be back at it in no time, I’m sure.

I was excited to finish at 7:01am and ran up to take a shower…..I was a little later than I originally planned but still WAY earlier than usual.

During my run I had a thought flash through my mind……as awesome as it is to be done the run and to have extra hours in the day – what that really means is more hours to clean the house. While that’s awesome as far as actually taking care of my home, I hate house cleaning.

I was also a little nervous about being hungry all day or the dreaded 3pm crash.

I really wasn’t too hungry, but man!!!! By 3pm, I was BAGGED! I’ve managed to make it through the evening, and I’ve gotten a TON done today but I’ll be heading off to bed sooner rather than later.

I’m still trying to decide if I’m gonna try another early morning run on Wednesday.

Oh and I managed to freak the crap out of Jon and the kids…..NO ONE is used to seeing me up that early and it really threw them all for a loop. Throughout the day, I had different ones asking me what was wrong? What was up? And what was I thinking?

From that standpoint, it’s nice to shake them all up once in a while. Gotta keep them guessing!

A Fairly Regular Week Around Here.

IMG_9079I have these brief moments of clarity. Unfortunately, they are clouded by the fog of chaos and exhaustion that is my life these days.

This past week has been particularly trying and yet, it’s really not any different than any other week around here.

Jeremy had an epic meltdown on Monday night….what that means is that he fought against everything we said and needed and asked him to do starting at 3:30pm. It exploded at 6:30pm, with him huddled in a sobbing, screaming ball on the kitchen floor, begging us to leave him alone and to not touch him. All of this while trying to get the two little boys through their evening chores and headed up to bed……which is it’s own gong show of happiness. We finally got Jer settled enough. He had a great chat with Jon and was able to clearly speak of what was going on for him. It’s just too bad that it took 3 hours of intense energy and chaos to get us to that place.

Tuesday morning (and most every morning) involved a great deal of wrangling to get Josiah to school. He has a lot of anxiety and getting him to school in the mornings involves a tremendous amount of creative thinking and fast talking to movitvate and challenge him to actually make it to school. Tuesday afternoon, I picked Siah up from school and took him, Judah and Xandra to our family Dr. Siah has a few warts on his hands and has been getting them frozen off. He had a massive anxiety attack thinking about getting them frozen off and ended up making himself sick in the waiting room of the Dr.s office. He puked 4 different times and managed to hit the garbage can for 2 of those…..the other 2 required a lot of paper towels and a fair amount of apologizing on my part. I finally promised him that we would just “show” the Dr his warts and that I wouldn’t make him get freezing. After that, he didn’t puke any more and miraculously recovered… more puking that evening and he ate well and had no issues. I HATE ANXIETY!!!!!

Wednesday was a quiet day…..I remember thinking how weird and bizarre it was to not have anything crazy going on. Jon did have to work on his second job that evening so I solo parented the bedtime routine and it’s just not as fun as it sounds like it could be.

Thursday was a crazy day. Last week I got a call on Tuesday asking if we could come in to the orthopedic clinic on Thursday for an appt with Dr. Pike – an orthopedic surgeon – who does both pediatric and regular orthopedic care. He specializes in arms, shoulders, wrists, hands……This is the surgeon who will follow Geli into adulthood. I couldn’t make the appt for last Thursday because all the appts are in the afternoon on Thursday’s. This means that I have to arrange pick up from school for Josiah and babysitting for Judah. Fortunately, my mom was able to come this week and watch Judah and pick up Siah. Before my mom got to my house, I managed to tidy the house, do the laundry, clean the kitchen, make a batch of chocolate chip cookies for an after school snack, put together a roast beef for my mom to throw in for dinner, and a quick note with pertinent details for my mom regarding that afternoon.

I was exhausted before even leaving the house. I remember thinking to myself,

“Why don’t I have any help?” That was quickly followed by,
“I try to do it all by myself so that I’m not a bother for anyone.” Which was followed up with,
“But I’m one breath away from breaking…..I can’t do all of this.” And then,
“Why do you try to do it all by yourself?”
“Because I don’t feel that I’m worth……….. bothering people.”

I had a lot more thoughts, but that one hit me pretty hard. I needed to leave for the hospital so we wouldn’t be late and so I filed that thought for later….

Angelica’s appointment was for 1pm and I was really hoping that we’d be quickly in an out before traffic started. There was a surgery that called the dr away just before he came to see us….which means that our quick appointment turned into a 2 hour affair. Which is not bad for “hospital time”.

The long and the short of that appointment, is that Angelica will definitely need surgery. If fact, her shoulder is bad enough that if she was in pain, they’d replace it now. The surgeon said it was “really ugly.” Once again, the comment we keep hearing is, “You’re not in any pain?” It looks bad enough that they expect she should be in a lot more pain than she is. We are so incredibly thankful that she is not in pain. And because she is not in pain, we can put off replacement surgery. She will most likely be looking at both a shoulder replacement and an elbow replacement but it could be a while, yet. This is great news and frustrating, at the same time. Geli has limited mobility in her shoulder and her elbow has a short range of motion. It doesn’t fully extend and won’t fully contract either. She has learned to compensate by reaching with her left arm if something is high above her or by using her right arm, if she needs to extend her arm straight out. It’s still awkward, but we choose to be thankful that she is alive and has both arms to be able to use. We are incredibly thankful that she is not in pain because living with constant physical pain is a horrible, horrible thing to have to do.

We finally headed home…..arriving just in time for me to pick up Jeremy and take him to a counseling appointment. He had his appointment from 5-6pm. I dropped him off, connected with his counselor about a few issues and insights from that week and headed back home to grab a bite to eat before I headed back to pick him up.

His counselor is so kind and thoughtful; and asked how I was doing. Truthfully, I don’t even want to answer that question because I am not doing well. I think I hit breaking point a long time ago and I’m desperately hanging onto the belief that this is a season and it, too, will pass…..I’m just very tired of existing. I’m very tired of all the issues. It’s been a very long time of chaos and conflict; and I’m not so sure I see it ending anytime soon. I gave her a pat answer….and then I answered truthfully and then I cried; then I pulled myself together and took Jeremy home to finish off the evening.

Friday morning brought it’s routine school related challenges although this time, it was Judah who decided to have a flip out. He did not want to go to “school”. He wanted to stay with me. He was clingy and whiney and so very unlike him. He typically fusses about not wanting to go to school…..I think mostly because that’s what Siah does and it must seem like that’s just what you are supposed to do in the mornings……but when we get to school, he goes in and is so happy to see his teachers and friends. He kisses and hugs me and heads off for the day without a second glance. He was SO UPSET. It took about 15 minutes to settle him and I was really confused about why he was doing this…..I even questioned just taking him home with me, because it was so very out of character for him.

Friday afternoon, I picked up Judah from preschool and then picked up Siah. Siah’s desk looks like a recycling bin. It is so full of random bits of paper, junk and garbage. I go in about once a month to scrape his desk out. I put all his pencils and crayons back into his pencil box and stack his duotangs and exercise books. I throw out all the garbage and collect the “treasures” to take them home. He struggles with the “messing with” of his treasures and would just rather live in the chaos – on the best of days – Friday was not one of the best days……..

He melted down in the classroom. Tears, yelling, crying, pleading…..he was anxious that if he brought the 500 origami creations home that they would get destroyed or lost or somehow messed up. He just wanted to leave them at school, but when your collection is shoe box sized and stuffed in your desk… just needs to come home. We finally managed to get his desk tidied; the creations in an actual shoe box and him out the door. The real fun started once we got in the van and he refused to put his seat belt on because he “HAD” to take the box of origami back into the school. He screamed at Judah for fussing at him. He screamed at me for everything. So much yelling and pleading; and zero grasp of the reality that it was not going to happen. It took 15 minutes. I have it on video. I’ve been recording “events” for when we go for his assessment at the end of February. It’s so much more than just a normal upset or frustration.

By the time I finally got him calmed down enough and we headed home, I was exhausted…done. We fed the kids frozen pizza (cooked, obviously) and sat and watched videos.

Saturday was the anniversary of Nathaniel’s birth and death and was just a low key – stay at home day. I’m ever so thankful that the kids held themselves mostly together.

This is not really an “out of the ordinary” week. Maybe the fact that I don’t have an actual “incident” to report for Wednesday or Saturday might make it memorable in a positive way….but it all feels less than positive.

And the biggest hit for me this week….bigger than Jeremy’s meltdown, bigger than Judah’s flip out, bigger than imminent surgery, bigger even than Josiah’s epic flipout… that fact that I don’t feel worthy.

I feel worth less…..

It’s a pretty crappy feeling.

Why do I feel like this?
Why do I see myself as worth less than others?

I don’t know…..but I think I need to figure that out.