Tag Archives: family

The event that matters most

In 2025 we attended one too many celebrations of lives. With my mother-in-law’s birthday on the horizon, I wondered why do we wait until a person has passed to celebrate their impact? I had this idea to celebrate a life well lived, while she is still with us.

Full disclosure, my mother-in-law is healthier and more independent than most 70-year-olds. She lives mostly-independently, will walk a mile to Bingo if her ride cancels and she “doesn’t want to bother” her boys. Make sure you have made yourself right with your maker if you dare to sit in her bingo seat! She attends mahjong at the senior center, frequently kicks my ass a cribbage and while she has had a few health issues this year, at 94-years-young she is still living her best life.

We wanted to celebrate that life, while she was here to enjoy it. A few weeks ago, we held a surprise party (I know, throwing a “surprise” party might be ill-advised) that was attended by almost 70 of her fans from 2 years-old to 80-something. Those who could not attend, called and sent well wishes. She was beyond happy and could not believe “all the young people” who came to see her for her birthday.

At the end of her evening, as we sat around my kitchen with the last few family members and friends that are family, I asked what the most significant event witnessed in all of her years.

This woman was born just after the depression, was witness to WW2, The Korean War, Vietnam Conflict and the multiple wars in the Middle East. She was here for Pearl Harbor and 9/11, both tragedies.

In addition to hardships, my mother-in-law was witness to extreme technological advances. Most of which children of today take for granted. For example, not just having a telephone in your home but in your hand. The same for TV and computers. The invention of the microwave and a man walking on the moon.

She was here for desegregation, the polio vaccine, the creation of Earth Day and the fall of Communisim.

I truly was expecting her to say the invention of the Bingo Hall to be the most significant. Or meeting the man of her dreams. In all seriousness, I expected her to recall some historical nugget.

Instead, her answer was both simple and eloquent:

When I was 10 years old I was adopted and that is the day I remember the most”

Most of us present knew she was adopted, her family history is something well known in the family and frequently spoken about.

What resonated with me, was that in 94 years her most significant event came down to family.

I have written frequently about my village. How thankful I am for their support of myself and Bridget. I know this life would be so much more difficult if it wasn’t for all of you who read my words, who meet me for a walk (or glass of wine).

Bridget would not have a diagnosis without all of you.

When I think back to Bridget’s 17-years, I am in marvel of the scientific advances that have occurred just in her lifetime. It took her almost 6 years to be diagnosed with a rare genetic syndrome. Twelve years later, children are diagnosed with PACS1 within months of birth.

Had Bridget been born 94 years ago, she would not have survived. Had she grown up in the 1970’s she would not have been educated. Had she been born in the early 2000’s it would have taken so much longer to be diagnosed. The evolutions in medicine, surgeries, special education and therapies have come so far just in her lifetime and beyond infinity in her grandmother’s lifetime.

My hope is that when I am 94 and someone asks me what the most significant event I was witness to in my lifetime I don’t focus on all Bridget has overcome but rather…

The family we have acquired thanks to her diagnosis.

In the end of our days, yes the advances of medicine, technology and world marvels will be important.

But signficant?

My mother-in-law was so right. The most significant event in our lives, if we are lucky, is the family you decide to make your own. Whether it is the family you are born into (and keep), married into (and keep) and in the very best moments the family you decide to make your own.

If you are very lucky, it will be a mixture of all three.

And for that, I am truly thankful.

Ten Things

What I like most about the Thanksgiving and Holiday season, is that so many of us take a moment to realize how lucky we are, even if we are not having the best of days (or hours). For example:

Being able to send a WTF SHOOT ME NOW text and have a friend respond: Do you need bail money, help hiding the body or just a wine drop off?

Having a house full of company for the Thanksgiving holiday. Yes, it was chaos. Yes, there was a lot of food, laughs and dog hair every freaking where. And my MIL kicking my ass in cribbage, again.

During the Thanksgiving, having my nephew and niece stay with us. That they let me be Kerri the Great to their toddler. This little child who is so typical it does my heart good to be a witness. This is going to sound weird, but it no longer hurts to see a little child who takes for granted how easy it is for them to run, eat and climb. Rather, it makes my hurt burst with pride at how wonderful parents my nephew and niece are. Their toddler has totally stolen my heart, in all the best ways.

Not only can I message my other nephew, who is serving overseas, but he can message me back within minutes. He (like my eldest) has no respect for the time difference, texting me at 2am my time without even realizing it. I am so thankful he does, that even though he has been serving our Country for the entirety of his adult life, and been not local for 100% of it, the connect has not faded but rather grown.

I am so thankful to have this friend, who honestly rebuilt her life from the ashes and is now paying it forward. On Instagram @LisaRisesStrong she is putting herself out there, trying to help others live their best lives. That I have been able to be a witness to her growth and can now share her with the world to showcase how awesome she is something I am so thankful.

It now officially Christmas music season. And that Pandora exists so I can make a playlist of my favorites and more that Bridget seems to know the difference between Christmas music and all other genres.

There is no Elf in my house.

I think we have found the right mix of medications to keep the catatonia at bay and bring Bridget back. During the holidays, the company did notice she was still reserved and not quite as social. However, they noticed a huge improvement from the summer. Thursday when she got off her school van, she actually chatted with the van driver. That is a bigger deal than some of you may realize. She also chatted with a stranger at Market Basket. Okay she was trying to once again explain to a random shopper why they needed the PINK pop tarts. But she engaged and talked to someone that is not me.

That Amazon exists. Okay, I know they are horrible for local small businesses. But having one child in the frozen Tundra, one nephew overseas and countless friends around the world, it is so very helpful to do one stop shopping and shipping.

Last but not least, I am thankful for when there are those times I have to work from home on a weekend, this is my office.

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.

My Mother-in-law’s Curse

Do you remember when you were a teenager and your mom cursed you with: I hope one day you have a child just like you?

When my mom said that she meant perfect like me, it was more of a hope than a curse. Especially when I was a teenager. I never caused problems, there was never any drama, and I was a perfect student. Really, she had no idea how lucky she had it.

My mother-in-law on the other hand raised a bunch of hellions. I don’t know how she survived them. When she said her curse, she meant all the voodoo type of future grandchildren that would cause her children more gray hairs and sleepless nights. It’s true, my sister-in-law was gifted boys just like her brothers. It wasn’t her husband’s fault at all that the boys were wild.

Of course, my mother-in-law never mentioned the curse she bestowed on her son. And to this day, she will probably deny it.

With my eldest, I understood the curse was real. While she wasn’t a total hellion, oh man the teenage girl drama was real.

For some reason, I thought with Bridget that I was spared by my mother-in-law’s curse. Since Bridget has always been behind her peers and has a mind of a 4-year-old, I thought puberty would either never happen (yes, I was swimming in the river of the de-Nile) or would just be something she would not realize was happening.

Then catatonia happened. Then depression happened. Then PACS1 remained the gift that kept on giving. And now puberty and all the fun that goes along with it.

This Saturday was a perfect example of wondering what the hell is going on. Refusing to get dressed and wanting a PJ Day on a perfect end of summer day. Not leaving her room, on her device all freaking day. Now I remember my eldest at 16 doing this, spending the weekend in her PJs and the odors that go along with that. The just hanging out in her room, only to come out for food and water.

Because of the way this year is going, of course I have to grapple with is it PACS1? Is it catatonia? Is it anxiety because she doesn’t know what to wear or what the day is bringing? Is she depressed because she isn’t in her routine?

Or is she just being a pain in the ass teenager?

After being in her room for an hour, she comes out buck ass naked like the 4-year-old she is, asking me to help her get a dress of a hanger.

It again reminded me of my eldest at 16y, ranting at me one moment and being sweet as the young child I remembered.

Sigh.

All I know is just like typical moms, this mom will be doing a happy dance when the van picks Bridget up for the first day of school tomorrow. Hoping the battle to get her out of the PJs is a short one.

Just like I used to with her sister.

********

Disclaimer: if my mom denies that I was a perfect teenager, remind her that she is old and I am in charge of whatever nursing home she ends up in!

For every bad day

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.

I had another post planned…

Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra  and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.

We lost another person to Suicide, Anthony Bourdain. Continue reading

5 minutes to Home

I never thought I would have a home.  A true home. I always wanted one. I wanted someone to say Good Night John Boy. I wanted a place that would never be taken away, that would be safe and whole. Where people stayed. Not for a few months or years before moving because we needed to go NOW without a plan or a safety net.

Just a home, one where there was laughter and sunshine.  Continue reading

A not so little wish

I used to love Christmas as a child. Before the freaking elf was invented, Christmas was fun and full of magic. My mom used to get upset with me when it came to Abby’s Christmas. I would never tell her it was Christmas Eve. She would just wake up (at her normal time) Christmas morning, surprised to see all the gifts.

It was perfect!

She got up at a reasonable hour, I received the best gift ever–not having to answer every single night if Santa was coming.

Then the grandmothers conspired against me.  Continue reading

We came, we shared, we joined together

I’m finding it difficult to put into writing. Go figure, here is usually where I just let it all out. Last weekend our family traveled to Virginia to meet our PACS1 family. The weekend should have been an absolute disaster. We had 14 families traveling from around the world.

One PACS1 family traveled from Australia. The trip with their 2-year old son took 36 hours and upon entering the lobby the poor thing suffered a seizure. Being PACS1 parents meant that while the dad checked in to the front desk the mom gave medication and handled the situation. I’m sure the front desk clerk almost puked in her mouth. But PACS1 parents continue on with their lives.

Another child began vomiting and had to be admitted overnight. Again, the PACS1 parents handled the situation. One stayed at Busch Gardens with the older sibling while the other parent handled the ER. Then they switched off.

The hotel messed up 5 of the 14 reservations. Again, some would have thrown their hands in the air and gone home. Not our PACS1 families. We traveled from 4 countries to be together. Three families traveled from Texas. One family drove from Michigan. Two families from New York and another two from New Jersey. A family crossed the border from North Carolina, while still another flew from Kansas. A newly diagnosed family from Ohio was lucky when one parent couldn’t make it a friend said I’ll drive with you and became our weekend photographer. Bridget met her new best friend from Tennessee. Families from the US, Canada, Australia and Spain. Oh and our family from the Cape.

IMG_4279

It was different than I had expected but so much more than I could have imagined.

It should have been an epic failure, but it was more awesome than I can fully describe.  Continue reading

This is an Autism Family

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