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Ten Things

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This was a really good week! Which always makes it easier to find ten things to be thankful for, but it important to me not to take the good week for granted.

  1. When I was nervous about bringing Bridget to an event this weekend, not only did the hostess with the mostest immediately call me, she stayed on the phone with me for an hour to discuss different strategies moving forward.
  2. That when my favorite SPT friend saw the emotion board school sent home to help me with discovering why Bridget was upset told me not only was I doing it wrong but I was a dumbass for not talking it over with her in the first place HAHAHA
  3. That Bridget sat for THREE hours in a Dunkin’s while I met with another mom, someone I hadn’t seen in years and we were able to reconnect in such a special way.
  4. That Bridget walked a mile in her school’s fun run/walk. Okay it was a forced march, but she did it.
  5. That when I went to do something drastic with my hair, the stylist not only talked me out of it, but asked (and listened!) to why, came up with a plan and told me to think of it for a few weeks.
  6. That my 93-year-old MIL that can manage to walk a mile and a half to bingo but cannot manage to get out of her own bed without falling, came home from the hospital as feisty as ever.
  7. That event I was worried about attending? Bridget did awesome, chatted with others and had the best time.
  8. That Bridget’s medical team listens to me and works with me.
  9. That I was able to see Bridget at her school, surrounded by her true peers and see their friendship in person.
  10. That I could be there for a friend this week, instead of them always being there for me.

And one more, that this week there were more moments like this

One more week

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Most parents want their child to outlive them.

There is a common refrain with parents whose child has special needs:

I want to live one day longer than my child.

One more way this life with Bridget is different than my life with her sister.

With Bridget’s latest PACS1 hurdle this year, one of my biggest struggles was knowing that if she was in a residential program, if I was not in her life every day was knowing in my soul that the catatonia would have gone unreported and untreated.

That is not saying I am perfect or the only one that cares for Bridget. But I am her natural historian. I am the keeper of the medical record. I am the one that has developed a relationship with her team (medical, therapeutic and educational) that when I had concerns about her stimming listened to me and kept searching for an answer.

While I have been struggling with the guilt of the treatment course, the larger battle for sanity was going down the rabbit hole of if I was not willing to advocate for her, if I was not so in-tune with Bridget, what would have happened?

And that is why each and every special needs parent hopes to live one day longer than their child.

Because while we have a village, we have support and people who love our child they are not in the day-to-day, they don’t know the medical history or treatments that have been tried and/or adapted for success.

I am lucky, I am not a single parent. Yet as awesome as Bridget’s dad is…I am the primary caregiver and knowledge base. Some days it is a heavy burden, being the keeper of Bridget. I am lucky that I have a husband who does his best to share the load. I have friendships that do whatever I need, in the moment I need it.

Bridget is lucky, because she has a sibling and cousins that have promised to care for her long after I am gone. And as much I am grateful for that, I know it won’t be the same for Bridget. Not because they cannot but because no one really knows what life with Bridget is like and I don’t ever wish her to be a burden.

This summer, we almost lost Bridget again and I realized that I do not want to live one more day than Bridget.

I want to live a week before the grief is too much to bear, living without her.

I want to celebrate Bridget. I want the world to know that the girl who was told she would never did so much more than we ever imagined.

She rolled over

She walked.

She jumped

She talked and convinced an elderly lady at Market Basket that she “needed” the pop-tarts Bridget put in her basket.

She has made friends and an impact.

She has redefined my expectations, once again.

She has battled and is doing her best to win another fight against PACS1

Bridget will always be fighting PACS1.

And that I why I need to live one week longer than she does.

To tell her story, so that her life is not about her struggles but about her impact.

Ten Things

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I am a firm believer that the more I recognize the good that has happened this week, the easier it is to deal with a week full of Mondays.

And this week has been a Monday. All freaking week. It wasn’t just me, either. Everyone I talked to, from friends, coworkers, customers and Bridget’s team said their week felt like one long freaking Monday.

Which brings me to the first thing to be grateful for

  1. That others acknowledge bad days. That when I say this has been the longest Monday, and it is Thursday they immediately get me and make me feel less alone.
  2. That my week started with brunch with two of my friends from high school. That we shared, laughed until we cried and shared the hard times. The times that in the grand scheme of things, are less than world hunger but more than noticing the milk has gone sour after your first sip of coffee. That the time went by so fast it wasn’t until we got home that we realized we forgot to take the group selfie. Again.
  3. That I’ve kept this basil plant alive. Those who cannot grow, buy their herbs from the grocery story and the fact that after multiple attempts to grow my own have failed, my Market Basket basil is alive and well.
  4. Wine, because let’s face it life is always better with Pinot Grigio.
  5. When I lost my shit last weekend after Bridget screamed she hated me (while hugging me) my husband didn’t try to fix me. Instead, he held me and said, this really sucks.
  6. That my mom is finally healthy enough to go out to dinner and ate her entire meal.
  7. That my sister-in-law read how I blame her mom for the “mothers curse” post and saw the humor (and agreed with me).
  8. That at Bridget’s IEP this week, her team were kind at keeping my expectations in check and understood my need to make Bridget as independent as possible before she leaves their school.
  9. That I have a village that remember all of Bridget’s appointments and check in to make sure I am okay. That they check in to share their own struggles so that I do not feel like I am always taking from them. That at the brunch on Sunday, they just assumed Bridget would be there and when she was not poured me a really big glass of wine and let me really relax for the first time in too long.
  10. That my week ended with mall pizza with Bridget and another best friend who didn’t care that we were at a food court. She laughed when shoe shopping for Bridget took 2.2 seconds and when we strolled the mall, she engaged with Bridget. Friends that bring Bridget out of her shell and into the world around us is priceless.

A week full of Mondays could leave me crying in my wine. But as hard as this week was? It was also full of more than ten things that brought a lightness to my week. The friends that make this unexpected life so much easier to navigate the speed bumps life keeps putting in our way.

What are you thankful for this week?

Deep Breath, there is so much to be thankful for

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It would be easy and probably forgivable if I allowed myself to stay in the pity party mode with all that has been going on with Bridget lately.

Those that know me, know that I set a timer on those moments, because there is way too much to celebrate. Even on the days when what I may be celebrating is that I realized my shirt was on inside out before I left the house and not midway through the workday (true story).

With the end of Summer this weekend (where did summer go!), instead of remembering that this summer was full of really hard moments, I am going to celebrate the best moments that happened in between all the crap ones.

  1. My eldest used us as a pit stop on her way to India and a trip of her lifetime to start the summer off. We hadn’t seen her since Christmas and let’s just say someone was very happy to see her.
  2. In all the craziness of catatonia, we found a new team of Doctors who meet with us once a week via video and explains things in a way that makes sense. They don’t talk at us but with us and truly care about improving Bridget’s quality of life.
  3. An unexpected phone call from a researcher who is studying effect of PACS1 on the brain and learning that not only has he not stopped studying PACS one, but research is also continuing by others across the States.
  4. That my office has been supportive and helpful with all the expected and unexpected time off for Bridget appointments. Bonus: they never judged when I took a “me day”
  5. Friends that check in, friends that have been there when they can and accept when I cannot be there.
  6. That my mom still goes to Barry Manilow concerts and dances like a teenager.
  7. Pinot Grigio.
  8. Our annual camping trip in the land without WIFI or Cell Service. I was so nervous about how Bridget would do. There were low moments, there were moments where she was not herself balanced with moments in the pool (her happy place) and the campfire where she was the girl I remembered from summers past. That we were surrounded by friends that said there are no words, but they are always here for us.
  9. While we have not been able to do date nights, we have a firepit. Our backyard escape has been where we can reconnect and remember that throughout it all, we are a couple first and Bridget’s parents second.
  10. That while summer might be ending this weekend, there is still time for moments like this:

What are you happy for this Summer?

Small moments, big results to keep myself sane

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The beach is my happy place.

It is not Bridget’s. Yes, I can get her there, but she wants to leave as soon as possible. Between this trait and her not enjoying M&Ms, I sometimes question if she is really my child.

Then she cracks a sarcastic one-liner, and yup there is the proof!

With everything going on lately, some have asked how I keep a positive attitude (full disclosure, it is not always sunshine and glitter over here) and/or I hear “I don’t know how you do it”.

Here is the thing, I don’t have a choice. I rechecked the hospital records and there is not only a non-return policy, but apparently children also don’t come with warranties. This may have been helpful information prior to deciding to have children. It’s like a super-secret detail no one tells you when you are young and want to start a family.

My advice to anyone who is overwhelmed by whatever crisis their child is facing is to find small snippets of “me time”. I know, it is not easy. It’s not like you can just escape for a weekend getaway with your spouse. You can’t afford to even go to dinner because it will cost you not only the cost of dinner, but at least $100 in childcare costs if you are gone more than a few hours. That is even if you can find someone you trust to care for your child. We do not qualify for respite care (well, Bridget qualified for 1.25 hours per week–not worth the paperwork!).

The times I miss my eldest child the most is when I want to run to the grocery store and it’s raining. Kidding, I miss her all the time! But those moments that I took for granted when she was here and I could go for a walk with my husband are probably when I realize how lucky we were when she lived at home.

This is how I carve out a few minutes each week (I wish each day!) to just refresh and check out for bit.

When the pharmacy says Bridget’s prescription will be ready in about an hour, I send this text to my husband:

When driving home from work, I take the long way. I added 15 minutes to my commute. I listen to a podcast or the radio. Sometimes rapping along to Enimem if you are ever next to me in traffic, don’t judge my throwing hands. Sometimes rocking out to Adele or Toby Keith. I take those extra 15 minutes to transition from “work Kerri” to “mom Kerri”.

On the nights my husband works, I put Bridget to bed at 7p and watch the Real Trashwives and realize while yes, this life is difficult, it is not as dramatic as whatever crisis a Trashwife is facing this episode.

I put my earbuds in to drown out the sound of whatever video snippet Bridget is watching on repeat as I escape into a book.

I sleep in on the weekends. I get up at 6am, give Bridget her medication and then escape back to bed until 9am. Yes, I can hear her on the monitor on those mornings she does not go back to sleep. But I am not up and facing whatever she going to challenge me on today.

These are all small moments, I know. I know my typical friends with typical children try to understand when Bridget has to attend whatever they have invited me to. They also understand that when I say I cannot attend. There are days I really wish that Bridget was the typical 16-year-old, that my husband and I could escape for a weekend to remember why we’ve been together almost 30 years. That I didn’t have to bow out of invites or have my sidekick with me.

Thankfully those moments don’t happen too often. Because after I take the long way home, this beautiful girl is waiting for me on the front porch.

And that makes every accomodation for her worth it.

Keeping Score

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One of the most difficult things I am learning in this time of Bridget’s life is discerning what is behavioral versus what aspects of this newest disease is a mental health issue. Looking back (because it is always easier to see what I did wrong than to predict future mistakes), Catatonia began infiltrating our lives last summer.

As with all things Bridget-itis, the small things I either missed or decided were not important or they were becoming a part of her quirky and cute nature. What I thought was behaviors over time became the tools Catatonia used to try to keep my girl in her head and take her out of our world.

Read more: Keeping Score

Bridget started refusing to leave the house. Going to the grocery store (one of her favorite places) became a negotiation if there wasn’t someone to stay in the car with her. Thinking it was behavioral, I made her push through when there was no other option. I didn’t realize she was having anxiety, and it was mentally painful for her to walk through those doors. Score 1 to Catatonia.

Bridget started talking only to me at home. I thought (at first) it was funny that she would “hide” her face from her dad and whisper to me the answer to whatever he was asking. Instead of being a new behavior, she was having mental anxiety that led to select mutism. Score 2 to Catatonia.

Bridget, while camping, refused to come to the campfire. Spent most of her time not only in the camper, but in her bunk. Bad mom moment, I kind of enjoyed the peace and quiet of camping, reading my book by the fire not having to listen to freaking Doc McStuffins on repeat. Instead, Bridget was showing the first signs of depression. Score 3 to Catatonia.

I asked the Doctor about all of these new diagnoses. If developmentally, Bridget’s brain is 4 years old, what the freak does she have to be depressed or anxious about? Okay, honestly there was a different “f” word in there.

Instead of reprimanding my use of adult language (perks of talking to her psychologist, they’re probably used to much worse), he gently explained that while Bridget’s mind might be 4 years-old, her body is not. Not only is her brain continuing to adapt and fight PACS1, but it is also having to deal with all the other hormonal, body and insert your teenage angst issue here concerns. Since her brain does not know how to deal with all that onslaught, it retreated into a state of catatonia.

Taking a minute here to remind all of you that I am not a doctor and may have misunderstood or misinterpreted all the information the Doctors have thrown at us over the past 4 months. If you have any of these issues or concerns, don’t trust me. Seek medical advice from a medical professional.

Carrying on after that short PSA. The Doctor tried to explain to me that with catatonia, depression, anxiety, select mutism and PACS1 (plus every other diagnosis Bridget has) what I am / have been afraid were behaviors I needed to help her correct, where actual mental health issues that we need to treat.

I asked how to I make sure that I don’t inadvertently create a behavior during this time?

I totally stumped the medical team with that one!

Here is the dilemma, the medical team is treating Bridget the patient. They are treating all the symptoms associated with her new diseases. They are also trying to be caring and cognizant of how her illnesses now affect our lives. (FYI getting up at 6am every day to give her a med SUCKS in JC CAPS, especially on the weekends). Yet they never thought of what behaviors we might create while treating her medical issues.

For example, what if I let Bridget not participate in grocery shopping now, while she is in crisis. What happens when she is no longer in crisis but has a learned behavior of staying in the car with dad? I guess that is okay, if he is home. But what if he is not and I have to run to the pharmacy?

What happens if we isolate ourselves now, to protect her from all her illnesses but that leads to us never leaving the house? (Self-serving PSA–if I am stuck in this house for more than 3 days, not allowed to leave, send Pinot Grigio).

Thankfully, this new cohort of Doctors listen and care. The advice is that if a behavior is not impacting Bridget’s life (like her increased stimming) then it is not a problem. For me not to sweat the small stuff (they are obviously new to the team). The behaviors that do impact her life (not leaving the house) is something we need to focus on. First with medication, then when she is no longer in this crisis “flight” mode, with therapy and baby steps.

And we have begun seeing small wins. Last weekend, Bridget walked to the beach. Score 1 to Bridget.

Today she got off the van very upset because her favorite teacher was not in school today. She verbalized it, and let me hold her until the tears were dry. Score 2 to Bridget

Keeping score, right now catatonia is up 3-2.

I know with time Bridget is going to kick catatonia’s ass. I am just going to have to be vigilant that once she does, there is not another behavior she has to overcome.

If I was a betting person, I would bet on my girl. She has never let me down before.

For every bad day

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After my vent-post the other day, I received so much compassion that is simply overwhelming. As I said to one friend, I am a much better caregiver than caretaker. One person did reply (sweetly) that Bridget and I make this life seem easy. Not in the way people who have perfect Facebook/social media lives, but you know their real life is a hot mess.

In our case, whether you see us online or in the supermarket, we live Bridget’s life out loud. The good, the fun, the ugly cry moments and the ones that bring me to my knees.

The reason I am so open, is that if I can make one parent (or sibling) feel like they are not the only one living this life, that there is one person on this Earth that might not exactly what they are going through, I do know that feeling of what the actual fuck! I know how it feels that we cannot seem to have a “quiet day” but maybe not exactly what brought you to that moment.

We are also so very lucky. For every single bad day (or moment or month) we have 50 really great ones.

This past weekend was full of those little great moments that make it easier to get through the really tough days. I know they are little moments, and the bad moments have felt insurmountable lately. But for me, these moments allow me to remember the girl who would never…

After months of trial, we got to the beach!

….walked two miles this weekend and got to the beach. She could not stay but look how close she got to the water!

Then to make life a little sweeter, our girl managed to go to the grocery store (another win this month) and made the cake that she had purchased.

Everything is better with cake

And that, my friends, is how I keep the light in our lives. How as hard as this life can be; by celebrating these little wins, it makes the battles easier to fight.

My advice is to keep enjoying those little moments in your life, my fellow warrior parents. Celebrate them. Because if you do, I swear it will make the moments when you are in your driveway screaming at the trees how pissed off you are at this unfair life you’ve been given happen a little less often.

And for the times that you need more than good memories, I recommend calling a really good friend and sharing a glass of the adult beverage of your choice as they listen to how much you love your child but kind of wish there was a warranty given in the delivery room.

Dear Bridget

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Last week this memory popped up on my Facebook feed and I had no idea what I had written way back in 2013.

I searched and found this post where I was trying to explain to a four-year-old Bridget (Boo back then) why she had to work so hard to make the tiniest progress and how sorry I was that I am the one that causes her the pain, procedures and therapies. Yet I never once in those four years, have I regretted one moment of this unexpected life.

Unfortunately, for Bridget, turning 16 was not sweet. It has been nine months of struggle and after a lot of work, acquiring not one but four more diagnoses and adding more doctors to her list of specialists.

Which brings me to this moment, where that letter to Bridget needs to be updated. *Tissue warning ahead.

Continue reading →

This is an Autism Family

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A parent walks into the store, dragging her child kicking and screaming as other shoppers look on.  A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.

A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.

A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading →

For the uninitiated, this is what it looks like

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I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment).  I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.

For the uninitiated, this is what a meltdown looks like. Continue reading →