Tag Archives: special-needs

The same…yet so different

We are at a strange time. A time when most of Bridget’s typical peers are doing typical things. It is some days difficult to see my friend’s social media posts about their children, balanced by how happy I am for their child’s accomplishments.

Homecoming, for instance. My friend’s daughters are gearing up for homecoming, with dress decisions, boy decisions, deciding what events to go to. Bridget’s homecoming was a walk around her school and a bounce house. There might be a homecoming dance, but she will not get asked by a boy. She will not drive with friends or be dropped off by a parent. My friend’s daughters will get dressed and do their glam together. There will be laughter and oh my gosh moments. A typical father will wrestle with his little girl in a too short dress going to an unsupervised dance with a boy he thinks he could probably still arm wrestle, but not for much longer. A special needs father will dance with his daughter and make sure no one asks his little girl to dance.

The typical parent and the special needs parent will repeat this process in the Spring during Prom season.

The same, homecoming. But yet so different.

In our area, in Junior High students can begin making choices for where they will spend their high school years. This is usually when a special needs parent makes the most difficult choice between inclusion or a dedicated special needs school. For the typical student there is a process. Do they meet X criteria? Did they win the lottery for the most desired school in the district? For the special needs student it is a similar, but more convoluted process. First, unlike the typical student who can do school choice the special needs child needs permission to even begin looking at alternatives. Once the district is in agreement, the district not the parent has the ultimate decision on where this child will attend school. The schools that are dedicated to special needs also have criteria before even interviewing the student. They look at medical records (are they too fragile?). They look at IEP accommodations and how independent they are. They look at academic testing and IQ results. Yes, believe it or not in the special needs school there are IQ thresholds that may determine where this child can even apply. Each parent, the special needs one and the typical one will go through moments of heart-crushing disappointment and hope to have that moment of YES this is where my child will succeed.

Then the process is repeated, for the typical parent at graduation and the special needs parent when their child ages out of the school system the day before their 22nd birthday.

The same, yet different.

The typical teenager will get their first job. The special needs teen will work vocationally within their school day.

The typical teenager will play school sports. The special needs teen will participate in Special Olympics.

The same, yet different.

From there, as these teens age, the difference between that typical child and special needs child becomes greater.

The typical child will get their driver’s license. The special needs child will ride in the front seat.

The typical child will go into the workforce, the military or higher education. The special needs child will remain in their high school building.

The typical child leaves the nest. The special needs child will not.

Both children will be celebrated for their success and supported in their missteps.

The same, but just in different ways.

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.

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.
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
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.
That Bridget walked a mile in her school’s fun run/walk. Okay it was a forced march, but she did it.
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.
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.
That event I was worried about attending? Bridget did awesome, chatted with others and had the best time.
That Bridget’s medical team listens to me and works with me.
That I was able to see Bridget at her school, surrounded by her true peers and see their friendship in person.
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.

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.

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.
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.
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.
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”
Friends that check in, friends that have been there when they can and accept when I cannot be there.
That my mom still goes to Barry Manilow concerts and dances like a teenager.
Pinot Grigio.
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.
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.
That while summer might be ending this weekend, there is still time for moments like this:

What are you happy for this Summer?

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.

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