Restoration

It’s been a rough go for our family over the past year……over the past decade.

I’ve come to terms with the fact that I will never “get back to who I was”. I will never “recover” in that sense of the word.

I vaguely remember last summer….not the details but the overwhelming feeling of dread, exhaustion and horror that I felt. I could hardly crawl out of bed in the mornings. Choosing to comfort myself by saying that I was teaching my children to be independent and get their own breakfast. Usually a fight would require that I get up and mediate. I was ever so thankful to have help last summer. I remember thinking that I couldn’t wait for September when things would “go back to normal” and I’d be able to accomplish something……anything.

September rolled around and everything really fell apart.

Living with the challenges of special needs is not something that affects only the children or their parents. The entire family is impacted. Some of the impact is amazing and incredible…..things like knowledge and understanding(of diverse abilities) , compassion and grace (for all). Those things that may be need to taught to people who don’t live with differences are just apart of our lives. But along with that, can also come trauma.

Listening to older sibling melting down for hours, is wearing. Witnessing the chaos that a meltdown may bring and being forced into a secondary position while a parent attempts to regulate an extremely un-regulatable situation is traumatizing. Even if it’s all you know, it wears you down.

This past school year, we spent the entire year dealing with the effects of trauma within our youngest. Within the final months of the school year we saw the pendulum shift. I started to see glimpses of joy and peace and happiness where there had been only anger and fear and control.

I have help again this summer and it’s incredible. I’ve beat myself up for needing help. Felt guilty for taking time for myself. And come around to the understanding that, I need restoration. For me to heal is critical. Just like we prepare time and space for our children to heal and grow……taking time for myself to heal and grow is also critical.

So this summer, I will sit in the sun and I will float in my pool. I will drink a glass of wine on my deck and enjoy those moments where everyone is playing nicely (because they are actually happening this summer). I will take care of myself, my husband, my family and my house. I will let go of all of those things that weigh me down (this will probably have to happen hourly because I am an expert at self doubt, guilt and overthinking) even though I will probably pick them back up, too many times.

My future feels a little uncertain because I don’t know what it looks like; but I do feel that I am healing and that I am being restored and this is a good thing……a very good thing.

Standing in the Storm

It’s not very calm, inside of me, at the moment.

This is my “before.”  I want to write about “the before” because I know I will appreciate it, so much more “after”.

It’s been a tough couple of days. 

It’s hard to believe that it’s only a month ago that I hit publish and sent out an invitation to my Handmade Holiday Open House.  
Oh, I LOVE to create! But selling…..selling is just not my forte.  Promoting, marketing, cajoling, putting myself out there……it’s hard for me.  

Anxiety whispers at me incessantly. Telling me that no one cares.  Whispering lies about my talents and abilities.  Mocking my desire to create.  Belittling my ideas.  

And for the most part, I fight back.  I counter the lies with truths that I don’t quite believe.  I try to ignore the whispers. I choose to believe that my desire to create has a bigger purpose than what I may feel or see, in the moment.  

But as this weekend approaches, it’s gets harder and harder to fight.  It’s the nature of the beast.  You fight so hard, for so long, to stay afloat.  To not succumb to the waves of anxiety crashing over you and at some point, your strength begins to wane .  It becomes harder to stand strong and those voices seem to gain strength, as you weaken. 

This week has been tough.  It didn’t help much that I fell down the back stairs at the kids school on Tuesday.  I’m still physically sore and I belive that’s robbed me of some energy that I could have used for this mental gong show inside my head. ( On a side note, my butt’s a pretty shade of purple and blue.)  

Clinging and Hope

I cling to the edge of the cliff.  The fingers of Darkness and Despair curl around my ankles, weighing me down.  The continual  rain soaks my clothing, adding to the weight; it makes it harder to hold on. 

I dread the end of summer.  Even as the days shorten and cool, I feel myself starting to wither…..just like my garden. 

I could really use the sunshine and a beach, right about now. 

It’s hard.  I’m exhausted.  My boys are incredibly difficult right now.  We’re long beyond the October crash……this must be the November burn. Crash and Burn!

I’m sick of saying, “It’s hard.  I’m exhausted.” I want desperately to connect and yet…I have nothing.  I have zero energy to attempt connection.  But without connection, I’m alone.  So which is it…… it’s a losing battle.  

Sometimes I feel that if I could explain what my life is like that you might get it…..But I’m realizing that unless you live it, you won’t fully understand it. I share bits and pieces but never the whole….it would be too much to handle.  I know this because it’s too much to handle.

There is a certain amount of grieving.  Grieving normalcy…..But mostly there is just soul crushing exhaustion.  It’s like a cloud of nothingness with vague wisps of sadness and loneliness woven throughout.
I love my children and I hate how difficult they are.  

Autism, ADHD, Anxiety…..Even though they are labels given to two of my boys, our entire family is deeply effected.

There is so much chaos.  I feel like I’m constantly drowning.  I manage to grab small breaths of air….never enough to breathe deeply and the waves crash consistently enough that I’m left in a constant state of  panic.  

There’s only so much space for panic and my two boys seem to have the corner on that market.  Too often when I feel the panic rising, I stuff it back down with a shallow breath.  As if I could control it….

There is so much guilt and shame and yet…..that’s one good thing about exhaustion…..somehow you can’t muster the energy to hold onto the guilt and shame.  You feel it and it makes you feel dirty and worthless; but it’s too heavy to carry and there’s too much to be done….

So you drop it like most of the other balls you drop on a daily basis…..

You cling to the edge of the cliff and hope……you hope that you make it through another day.  You hope that tomorrow will be better.  You cling to the hope that seasons change and that this dark and gloomy season will once again give way to sunshine.  You pray for wisdom, strength, and patience.  

You pray for your kids to just hurry up and fall asleep so you can have a moment to breathe…..then you feel guilty….then you remember how much work there still is to do tonight and you drop the guilt as exhaustion takes over once again.

The Perpetual Grief Series 

We’ve had a lot of hard moments, recently! 

This past Sunday, neither of my little boys wanted to go to their class at church.  I know that once they are settled, they enjoy themselves; but transitioning from being with mom and dad to being in their class has been so difficult.  Sunday was no exception.  We managed to get Judah settled – but he wasn’t happy about it.  And Jon took Siah up to his class.  He sent me the picture up above, saying that Siah was pretty pissed to be there and was refusing to join in.  He was just standing in the corner, glowering at everyone.  

He finally worked his way through whatever transitioning he needed to do and realized that he could “improve on” what they were doing for the craft. At that point, he quite happily joined in.

When I spoke with him later,  he mentioned that getting  a”list of what was going to happen” would help…………and that explained everything.  He was feeling anxious and out of control.  His need for security and comfort displayed itself as defiance and opposition.  But the reality was that he was scared and insecure.

I suggested that maybe the calm Josiah needed to write the nervous Josiah a letter so when he had forgotten how fun class was; I could give him the letter so that he could remind himself…….because even if you won’t trust me, you’ve got to trust yourself, right?

He giggled for a long time about that.  

But it breaks my heart to see him stressed beyond the ability to reason.  He is such a smart, capable child as long as he’s not in “fight or flight mode”.  Once he hits that…..basically we hold the course until he can come to a realization by himself.
And yet, the longer he stays in that space, the harder it is on him –  physically, mentally and emotionally – and I hate that.  

I grieve the loss of normalcy.  I grieve the loss of ease.  I was looking back at pictures from when I had only the older three kids and while life back then wasn’t easy….it was different.  It seemed simpler.  It wasn’t easy.  Jeremy wasn’t an easy kid but he as only 1 of 3 and at that point I had no idea of the world of pain I was headed into.
I grieve the loss of self.  I grieve the loss of competence and confident capability.  I grieve the loss of innocence.

I feel like a part of me is stuck in that dark space of grieving.  Like it’s been so long that grief has been touching me that it’s infused itself into me.  Not overwhelming, just subtly changing……..winding tiny bursts of sadness here and there. Not enough to overwhelm, but just enough to never forget………

  

#microblogmonday 6

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Well, it’s almost late; but it’s still Monday so technically, I’m still on time.

I recently knitted my first sock. MAN!!!!! Those are some tiny needles. It doesn’t take too long to make the sock, but once I realized that it was just too small for myself or my girls – I wasn’t sure what to do. I got discouraged and didn’t bother making the second one.

Fortunately, for my momma, she’s smaller than us and the sock fits her fabulously. So I have begun knitting the second sock…..now I’m just nervous about being able to replicate the first sock close enough so that they don’t feel awkward……like one looser than the other.

But…….I knitted a sock and it wasn’t as difficult or as tedious as I imagined it might be.

After I finish this one, I’m going to try and make a pair that will fit my ginormous feet.

Finding a lose thread

It feels like I have a million thoughts running through my brain. I just wish I could pick one of them, out of the jumble. I feel like if I could find the loose end of “one” thought……then maybe…..just maybe I could start to unravel this mess inside of myself.

But it seems like the harder I try to wrestle within myself…..the tighter the mess inside me gets and I’m left wondering if I should just stop fighting so hard to unravel it all or even if I should just let it all go?

The biggest thing weighing on me right now is Siah……always with a heavy weight of Jeremy……but today we had a meeting with Siah’s school.

It was a good meeting, as far as meetings go with the teachers, the resource teacher and the principal go.

I’m so…….so……….

I’m so conflicted about it all.

Siah is so different that Jeremy. I get that. I get that no two kids are the same. But I also know what we’ve been through as far as assessing Jeremy and getting him helps and I’m not sure how to even approach that with Siah.

On one hand, I feel like they are saying “THERE IS A PROBLEM.” And on the other hand, I hear that they see the potential within him and they want to know how they can best support him.

I actually do believe that this school and these people really do want to help my son succeed.

I find it so hard, when our experience with Jeremy and school has been SO negative. Dealing with Jeremy and “the school system” was soul crushing. I had people saying that he was a nice kid but then sending him out he the hall or the sick room cause they couldn’t “handle” him.

Throw the maternal guilt and a massive anxiety complex on top of it all……and you have a very messed up trying to function through the pain and rejection while trying to survive against ADHD and undiagnosed Autism.

I keep hearing snippets from today’s meeting playing through my brain and while I desperately want to believe the good about people and situations….I feel like I’ve got a war going on inside of me.

I want to fight for myself and my kids. I feel like I can’t trust people. I feel like people don’t know us and won’t see “us”. I feel like they won’t understand and see the “good”. I feel like I have to fight…….kicking and screaming for everything that we deserve.

I don’t want to live like that. I’m so tired. I’m so tired of living “on my own”. Of raising my kids, “on my own”. Of fighting for my and my children’s right to be accepted and loved as they are………and not only “if they conform to social norms……”

I’m tired.

Jon and I were talking the other day and while I feel like I’ve recovered some from the intensity of the cancer devastation……..we’re left wondering if we will always feel tired like this…..

I don’t know.

I want to hear that people love my kids and want to spend time with them. I don’t want to always hear about how my kids are a problem or how they fall short. I don’t want to hear that I should spank or discipline harsher. I don’t want to hear that I just need to do it “this way” or “that way”

I want to hear that my kids are treasures and that they are special. And not because they have “special needs”

I need to go…..to go to sleep. To hopefully let some of this settle. Maybe in the morning, maybe then I can find a loose end to start unraveling. But for now……for now I will sleep…….and cry……..I hate crying. I’m so tired of crying. It sucks…..leaves you puffy and with a headache…..I hate that.

Cannot wait for the Christmas break. It cannot come soon enough.

Hospital Update

Hi there from BC Children’s Hospital

Geli Lunch
Geli with one of her favorite hospital lunches

Yesterday, Angelica tested positive for the virus that is responsible for shingles, present in a rash on her side. In other words, she is going through an episode of shingles. The same virus is also responsible for chicken pox, so there is a chance that the two younger boys that we have at home may have been exposed to chicken pox. This presents a problem because we are supposed to be going on a trip, leaving on September 30th, and the incubation period for chicken pox is 10-21 days which means that there is an outside chance that the boys could get the chicken pox right before we leave or even on the boat.

As far as Angelica is doing, she is confined to strict isolation until the shingles rash ‘crusts over’. This can take anywhere from 3-5 days. If Angelica were feeling sick, then she would just want to sit and rest, but she is physically feeling fine. The rash doesn’t even really feel like anything for the most part, except if you poke it… Add to that, that she wants to get back into shape and participate in team sports in school and have strength for the trip and she doesn’t want to sit still. I am spending the day today trying to find things to do that will not make the room feel like a prison. Angelica asked the doc today for a stationary bike. I have also asked for physiotherapy to come to the room and asses her phyisical condition and give her some strengthening and stretching exercises that she can do. Hopefully between all of this, the week will go by quickly and she will even be stronger when she leaves.

Thanks to everyone for your thoughts and prayers, and please pray that the boys do not have chicken pox at all.

~
Jon

The Week Ahead

Angelica finished her last round of chemo a couple weekends ago. The next round is called “Delayed Intensification” and starts on Thursday. In essence its like a mini version of the first two rounds of chemo and lasts until the end of January. In the first round, she lost her hair and had to deal with blood-sugar (diabetes) issues, and she is on basically the same meds for the beginning of DI.

There are a few things that are different for this round of chemo. 1) There are less doses, 2) the time is a bit shorter, and 3) she doesn’t have leukemia any more. In the first round she had less than 5% of her marrow actually capable of making blood cells and so when something killed her blood counts, it took a long time for the counts to come back up. That fact also played a big part in how the drugs affected her and what side effects she had to deal with.

Right now, her marrow has recovered to over 30% (which might not sound like a lot, but in contrast to 5%, it is. It is enough to make a lot more blood cells a lot faster). So even though we have had these medications before, we don’t totally know what to expect.

We are praying and hoping that she doesn’t have to deal with more hair loss or diabetes or the shots and blood tests that goes with that. We are also praying that she doesn’t have her blood counts completely decimated and that her immune system remains intact.

Thanks to everyone who has been so supportive of Angelica and our family.

JUST AMAZING

I love my girls. They are both turning into such amazing young women. Angelica is dealing with cancer treatment and being so brave (and winning) and Alexandra is showing such maturity in dealing with the changes at home. (And I really really really love Patti.)

Angelica is already a teenager and Alexandra is right on the doorstep, and this brings a whole new set of parenting challenges. I’m not freaked out about parenting teenage girls, but I am aware of what the world is like for them.  I make a point of watching the shows that they watch and we still get copies of their incoming e-mails. I want to know what messages they are receiving and how they are processing those messages.

The messages girls receive seem to be complete opposites. There is so much opportunity for women today to rise up and be as successful in any field as they desire, and the examples of successful women in business, politics and at home are easy to find. At the same time there are more messages in mainstream media that show girls in relationships that are at best demeaning… In most cases it seems that cheap meaningless physical relationships are the norm and I hate this! The message seems to be that what is inside has value and tremendous opportunity, but what is outside is not good enough, not valuable and not deserving of faithful devotion.

I want my girls to believe that they can be successful and at the same time they deserve to be respected in their relationships (not that they should be dealing with relationships yet), and that there is nothing meaningless about them, their bodies, or their feelings. (I’ve got a whole different post to write about the standards I want my boys to rise to as they become men gentlemen).

I can say a lot of words, but finding examples of this message in the real world is a harder task. It’s not that these messages don’t exist… Last year there was an episode of Bones where one of the main characters was talking to her daughter about relationships and sex. It was an exceptional conversation, completely accurate and a scene I would like to show my kids.

I heard this song on the radio a few weeks ago and I instantly fell in love with it.  I dedicate it to all my girls. Patti, Angelica, and Alexandra… You are AMAZING, JUST THE WAY YOU ARE: