Recently, WordPress informed me that I have published 1,000 blog posts. What started as a way for me to journal (though admittedly publicly) but also find a community where I might, just might, find a cure for Bridgetitis or heck an answer of what Bridgetitis was, transitioned into a way to not only keep my sanity but create a village of support.

I know, in my heart, I would be lost if I hadn’t started this blog. Not only because we discovered PACS1 but because it brought all of you into the conversations that otherwise would be stuck in my head. I know that it would have taken years longer to find a diagnosis. I know that I would never have gained the emotional support to survive the ups and downs of this life.

This weekend is a perfect example.

I had written a post recently about losing hope. Because I hit “publish” and a friend read it, she called me on my bullshit and brought me back to reality. She asked:

“Have you truly lost hope or did you lose hope for a moment?”

What was left unsaid was, did you put your big girl panties on and get over your pity party?

It was just what I needed, in that moment. A friend to remind me not to give up. Not to give up hope or any dreams I might have for Bridget.

Bridget’s future might not be what I imagined two-, five- or ten-years ago.

Since birth, she has been redefining my life, my expectations and dreams.

So, no. I have not given up hope.

I’m just restructuring my dream for her future to the reality that makes Bridget the best and happiness she can be.

This week has been probably the easiest of the Month. Wait, it is only the first week of October. But if this week sets the tone for the rest of the month, we will finally be (as I told a friend earlier) on the lighter side of hell.

1. That when Sunday plans to meet friends out get changed at the last minute for them to sit around my kitchen instead. Not only is the response, of course! But being told this is so much better than going out.
2. On Saturday walking with my favorite cancer survivor in the Boston breast cancer walk. There were mimosas made in the parking garage (is it still a mimosa when there isn’t enough OJ?), walking along the Charles as we laughed our tatas off, followed by breakfast in the City. Adulting at its finest for a great cause.
3. Laughing over a friend not to tag her on social, then she ends up in the news!
4. Running into a friend at the grocery store, us both laughing as we said we have five minutes to catch up. Then wondering why we only see one another at the market, when we live less than a block from one another.
5. The Bruins are back. Enough said.
6. Getting a call out of the blue from a friend about her son’s IEP and being there to bounce ideas off one another.
7. All packed for our last camping weekend and remembering Bridget’s diapers this time.
8. Being able to laugh at my MIL who walked her 93-year-old self to bingo this week when her ride cancelled at the last minute. Yes, we are concerned that she walked along a road with no sidewalks but am also in awe at her stubbornness and fortitude. Hmm…that’s where Bridget gets it from!
9. Earlier this week, when I posted a blog post I realized that I have shared snippets of Bridget’s story in 1,000 posts. That people still read, people care to learn about the struggles and the times when things are all sunshine. To have a reader this week message me that my words matter and give their family hope. That it doesn’t always have to be funny, but it always has to be real.
10. That while it is the first weekend in October, it is still warm enough for moments like this, where I recharge at my happy place and leave the world behind for an hour.

When Bridget was born, I knew something was wrong. I thought it was a “normal” medical condition and begged the nurses to save her. That first year, I was so in the trenches that I did not realize this would be her life. I thought that she would be cured. I did not know that we would be facing a lifetime of therapies, medical treatments and intervention.

I remember when she was a newborn, just wanting her to live and saying I would be okay with however she turned out, as long as she lived.

Over the past 16 years, my outlook on life with Bridget has evolved.

I remember thinking all those years ago, that I was okay with Bridget being my forever toddler. That she fought so hard for every milestone, I would not change her for anything.

Then I began to wonder who Bridget would be if it was not for PACS1.

Now I live with that forever 4-year-old and there are days I would change her into a typical 16-year-old in a freaking heartbeat.

There was a time, when I swore Bridget would never be in a contained classroom, or a special school. My daughter was going to graduate with her class and be a valuable member of her community.

Then she slowly stopped going into the mainstream classroom, spent most of her day in a contained one and we moved her to a school that specializes in children with significant special needs. Where she is a member of her community, just not the one I ever imagined.

At the moment I cannot imagine Bridget ever being in a residential program, but I have learned throughout this life that something can be true yesterday and false tomorrow. I no longer talk in absolutes with Bridget. What works for now (being home) might not be best for her in the future.

Recently another parent told me that they wouldn’t change their child with special needs for anything in the world. That they loved their child just the way they were.

I smiled and said of course.

Because I was that mom 10 years ago. I know that there is a certain taboo in thinking that we want our kids to be typical. There is something in us that makes us feel if we wanted to them to be “normal” we don’t love them.

We love our children, the way they are. And it is 100% okay to say we love this child but not this life. It is 100% okay to wonder what they would be like if they were typical. It is 100% okay to feel frustration, or down, or hopeful for a cure.

The truth is, we feel this way about our typical children, too. Name me one parent that doesn’t wish their child was an all-star on the baseball team, a future Olympian or a Rhodes Scholar.

That is parenting, wanting your child to be the best they can be.

As their needs change, as they get older, so does our outlook. We need to be patient with each other and ourselves. We need to be able to look back and say, yes, I wanted Bridget to walk at high school graduation in her cap and gown, with the friends she had been with since kindergarten. And it hurts to see those friends getting their licenses, looking at colleges, insert whatever dream just died a little.

And give yourself grace in those moments.

Because when these moments happen, you always made the right choice for your child based on their needs, not your dream.

Those that know me, know that I tend to be a realist. I am a suck-it-up buttercup, this is your life make it work kind of woman. Even with Bridget, while she has defied any person (including myself) who put a barrier in her way, I’ve always been okay with the barrier. I knew the work it would take to break down any walls. I knew that she would struggle, that there would be battles and that she would do the unexpected.

Like every parent, we all have dreams of what our child’s future will look like, and then we stand back and watch them redefine their life to make it the best one possible. Every parent has to watch at the sidelines as their child grows and becomes their own person. They may decide a different course than we expected (or hoped or thought). They might land on might not be exactly what we expected. We just hope that they will be more than what we are. We want them to accomplish great things, continue to learn and evolve.

I am in a strange place right now, a place where I think the battles may be over. That Bridget has accomplished all she can, and this is the person she has fought to become.

At her IEP meeting, I asked and was given the truth. I have always known that Bridget is my forever 4-year-old. I have always known she will not live independently, obtain her driver’s license, or go to college.

I thought I had come to terms with this life. That I understood this life. That I was realistic in my expectations for Bridget.

It took her most recent IEP meeting to understand that I was wrong. All this time, I was not being realistic but hopeful that someday Bridget would have a vocation. I knew it would not be at 14, or maybe even 16 years old. But I fooled myself, that one day, one day Bridget would have a job. I didn’t care what kind of job, but a place she would go and contribute to her community

That one day she would be a part of the community. Not “her” community, where special education resides and she is safe and has peers of her own capacity.

But the real world, the one we live in.

Foolish really.

That I mislead myself, knowing that Bridget cannot be left long enough for me to truly walk the dog and exhaust him but harboring this idea that one day Bridget would be happy and fulfilled working in a greenhouse for a few hours.

Or a restaurant, as a hostess telling patrons that they would be having pancakes. Even if they were not offered on the menu. Even if she doesn’t have the ability to read a seating chart or know how to count how many people in the party to seat the properly.

Selfish really, because if Bridget had the ability to have a job (even part-time), her dad and I would have a few hours of respite. That I am selfish (and honest) enough to say that if Bridget had a job, we would not have to be vigilant during those hours. That we are getting closer to retirement, and she is getting closer to aging out of the school system and how having her home 24/7 is going to impact our future.

During her IEP it became clear, that a vocational program might not be appropriate for Bridget. That she requires too much supervision, that for all intents and purposes, Bridget will always need a 1:1 and someone to not only lay out a task but a visual schedule for her to remain on that task.

That isn’t reality. That isn’t the real world. That is special education, that ends when she turns 22 years old.

The team did not say it would not happen, that they are working towards a goal of Bridget working in a controlled environment. The premise of her IEP is to give her small wins of independence. Even if she cannot enter the vocational programming next year, it does not mean she never will. I am so thankful for their honesty, that they were willing to bring my expectations in alignment with Bridget’s ability.

But I am that realist, who read between the compassion of the team as I let go of one more dream.

One more hope.

About 10 years ago, I wrote about Bridget’s autism diagnosis. How much I hated it, because I knew…. I just knew that if she was diagnosed with autism they doctors would stop looking at the why.

Thankfully, Bridget had a DOCTOR that looked at the whole child and knew that autism was just one diagnosis of many that made up my child.

I don’t write political posts but this Administration’s hypothesis that autism is a product of acetaminophen aka Tylenol is abhorrent to me. To have our president tell pregnant moms, for lack of a better phrase, to suck it up and not take FDA/CDC approved medication to stop a fever is ridiculous.

If acetaminophen is that dangerous it should not be on the shelves.

Then I remembered a former democratic president telling me that I did not need a mamogram.

Now I’ve had too many friends diagnosed with breast cancer.

Politicians should not be allowed to regulate healthcare.

They are not qualified.

We should be able to trust those who they put in charge, but very few administrations have actually put doctors on the front line (hell, Regan put Arnold in charge).

My child has autism

And 20 other health issues.

My mother’s instinct challenges and wins over politics.

But I should not have to feel guilty or fight politics as I am fighting for my child’s survival.

Full disclosure, I love memes. I find great enjoyment sending them to my coworkers when I see a nice OSHA or HR one. I giggle when I send them to my friends who get my sense of humor and also enjoy a good meme or two hundred.

What I like most about memes is that most times they put things into words I did not know I needed. Like this one I saw recently

Life as a caregiver of a child with special needs has no snooze button. It is getting up at the ass crack of dawn to give a timed medication. It is getting that same child up at 10p for another dose and hoping they use the bathroom at the same time, so you don’t wake up at 6am to a bed full of human waste.

It is watching the same IPad video over and over and over again. Any of you whose child watched Calliou or Barney or Bluey know what I am talking about.

It is helping your toddler get dressed in the morning, even when they are 16 years old.

It is packing a snack bag for any car ride, with a diaper bag in the trunk “just in case” you need it, even when they are 16 years old.

It is hiring a teen younger than your child to take her off the school van, since she cannot be left unattended.

This life means that you have parent-teacher conferences renamed to IEP and transition meetings until they are 22 years old.

It is being kept awake all night long while your child stims away.

It is answering the same questions over and over again. From is it going to rain, is it pool day, do I have school tomorrow to that question that cannot be answered: why is Princess Sofia’s amulet pink?

This life means cooking a second dinner, because you don’t want to be a short order cook but you also want your kid to just eat anything that has an ounce of nutrition in it.

On those nights that you are not making multiple meals; you venture to a kid friendly restaurant where you hope no one judges that second glass of wine.

When most teenagers don’t want their parents around, the special needs parent has to attend every gathering, every playdate and outing. There is no sitting in the bar while your kid bowls with their friends’ moments.

This life is totally doable, because there are also upsides.

But at the moment I am to tired to think about them. Instead, I am going to enjoy the fact that my 16-year-old with special needs child is in bed at 7pm and I have a quiet moment to watch the Real Trashwives. Until I have to wake her up at 10p for her next timed med.

While my friends with typical children have to leave their house at 10p to pick their child who it not yet licensed up from work.

In some ways this life might be more exhausting than others, but at other times so much easier.