Tag Archives: parenting

The little hits

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I have always admired my PACS1 friends that have twins. I feel like it was easier for me, especially when the girls were younger, to have 5 years between them. When my eldest was out of the princess phase, it never bothered me that Bridget was not entering it. I have always wondered how those with twins, that had a front row seat to the differences within their children coped.

In my case, having five years between my girls has always made it easier. First, I had a built-in nanny (until she abandoned me to be all adult like and got to college HAHA). Second, at any age, I could reason with the eldest. No, I cannot do X because I am dealing with Y. Thankfully my eldest was never jealous but instead had tremendous empathy for her sister.

Then last weekend I was cleaning out the girls’ rooms. Bridget had not so secretly moved into her sister’s room. I decided to make her old room into a true guest room and began organizing her sister’s things. Trying to determine what I wanted to keep for memories, what she might want, what were things to pass on and what was truly trash-worthy.

Then I came across this, and my heart broke a little.

It made me realize that I would never have this with Bridget.

Bridget’s bedroom is just that, a room with a bed in it. A place she sleeps. A place that is not filled with glitter (okay, thank God for that!), dolls or imagination. Bridget has never played; her sister would play independently for hours. Abby had such a vivid imagination, a sense of play and creativity.

Bridget finds joy in other things, mostly Dunkin Donuts, dinner at the 99, strawberry daiquiris and her IPad.

And that is fine, because in each case both of my daughters are happy. Honestly, I love the 99 so that isn’t a hardship.

In moments like these, where I am remembering where Abby was at 12yrs old and how she is now in her 20’s living her very best life that it is so very different than her sister’s will ever be. That she got to not only graduate high school but choose to go to a college so far away that I have to wonder why she chose to leave the sandbar for the iceberg.

There are days where it is so much easier with Bridget, if I am being honest. Unlike with her sister at 16, there is definite teenage odor, but there is no eye roll. My car insurance has not gone up, since Bridget isn’t getting her permit. I won’t have to pay for college or worry about prom night.

But there are days, like when I go down memory lane, that I wish for just a moment that I had to worry about Bridget getting into the college of her choice

Ten Things

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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.

There should be a what to expect book for your 50’s

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Remember when you were pregnant and there was this “bible” of what to expect in each trimester? While not 100% accurate there was enough details that you were not shocked when all of a sudden you could tell the difference between Braxton-Hicks and holy hell this is the labor the book warned me about. This book was then followed by a book of fiction about your child’s first year and their milestones.

Now knee-deep in my 50’s, I am kind of wishing that in my 20’s or hell even 30’s there was a book of what to expect when I entered second half of this life.

For example, I wish I had known that I once I got married would be answering the question “what’s for dinner” every freaking day for the rest of my life. And that when we then procreated the little monsters would not only ask this question every morning at the ass crack of dawn, but then they would probably refuse to eat whatever I then cooked for dinner twelve hours later.

It would have been helpful to know that in your late 40’s you not only will have a reemergence of acne, but you would also grow grey hairs. Further shocking is that gray hair is not limited to the crown of your head but your chin!

You cannot see the chin hair unless you put your cheaters on. Yet your teenage feral child will point it out to you from 20 feet away.

It would be great to know that while you might never change your diet or activity level from your 20’s all of a sudden in your mid-50’s there is 10 pounds you didn’t even realize you gained because of hello leggings and boobs.

In fact, you are so happy in your 50’s that you finally have boobs, that you do not realize that secretly that is where the 10 pounds have been hiding that all of a sudden you gain another 5 pounds in your ass and belly.

You are still walking and eating the same meals, for example popcorn and pinot for dinner. The portions have not changed. You are still doing the same amount of activity. But BAM all of a sudden you have boobs, an ass and for fucks sake a spare tire around your waist.

In your 20’s you could literally fall off a truck and there wouldn’t be a bruise. Now you trip over a spec of dirt on the floor, and you swear you broke your hip or look like you’ve been beaten by a tire iron.

You now throw your back out and end up in PT from making the bed. The same bed in your 20’s knew wasn’t worth making because after all, you are just going back in later that night.

You can no longer read a menu in a restaurant with good lighting and +1.75 magnifiers. Or for those of us who always wore glasses, suddenly you have to take them OFF to read the menu.

In your 20’s the world was whatever you wanted it to be. For example, you could just decide to move to Maryland. Just pack your car and go to Colorado or Mexico or Japan. Now in your 50’s you have all these children and a spouse and a mortgage.

Which is why you cannot just leave your job. No one wants to pay you the wage to afford the lifestyle you are accustomed to. Not when they can pay someone in their early 30s half of what you deserve for your experience. In your 20’s you could live paycheck to paycheck and now all of a sudden you are once again pinching pennies to make that when that 30-year-old is suddenly your boss you survive their learning that with your age comes experience they should probably listen to.

The doctor you never went to in your 20’s is now telling you about your cholesterol levels, fair skin warnings and making you get those new boobs you grew squashed into the mammogram machine by a perky little 20-year-old that has the coldest hands possible since she hasn’t put on that extra padding yet.

Without warning, you are suddenly getting up at 3am to pee, and there is not a baby in your uterus playing the drums anymore. It’s just your body saying: I know you’re tired but fuck you not only am I going to make you have night sweats that make it look like the roof leaked, I am going to make you run to the bathroom, fall over a spec of dirt and maybe just maybe not pee your pants.

The man you married, the love of your life suddenly breathes so freaking loud. Thanks to menopause (which is missing an “n” it should be MEN-ON-PAUSE), not only is your libido hanging lower than your new boobs but this man that lives in your home has become so annoying. The things you thought were cute are enough to make you go nuclear.

Especially when he asks you what’s for dinner and there is freaking chicken defrosting on the counter. You answer (sarcastically with a side of snark, if you are being honest) “lobster obviously”.

On almost the dark side of my 50’s I realize I am closer to retirement age than I am to being legally old enough drink. How did time go by so quickly?

Yeah, there should have been some warning to our 20-year-old selves that midlife comes a hell of a lot quicker than you think!

One hour

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There are 24 hours in a day, I recently did some math and realized that I am awake for 18 of those hours. Doing a quick debrief of a recent workday, I realized that I spend about 11 hours of that day either commuting to/from work, actually working at the office and then following up at home with employees, customers, answering emails and or phone calls.

During the week, another chunk of my time is spent caring for Bridget. When I deducted the times before and after school, Bridget during the week takes about 5 hours of my time. Not dedicated 5 hours, I am not her 1:1. But during those 5 hours, between getting on/off the van and out of/into bed, Bridget is the priority.

Now a lot of these hours overlap. For example, in the last hour I have showered Bridget, made her dinner, answered 5 texts from work and an “urgent” phone call (that was not that urgent.

Yet even if I said these hours spent between just work and Bridget were concurrent, that still leaves 3 hours left in the day.

And yet I, like many working parents, feel that there is no time left for “me”. We have sold ourselves this bad mantra where we have to be taking care of everyone all the time. We feel guilty sitting on the couch eating bon bons, even though we have already put in a full day and it might only be 4pm.

We parents are up in the middle of the night, when our child cries out. Even if they do not really awaken. Even though Bridget is 16yo, I think the last night I did not awaken (even briefly) to a sound from her bedroom since she was born. This is not because Bridget is not neuro typical. This is something all parents face, especially when they are waiting for their teen to get home and hoping it is before curfew.

I am not someone who has to have the cleanliest house in town. After a long day, I refuse to company clean or even do laundry. But I find other ways to fill that time between Bridget going to bed and getting out of it the next morning.

And not one of those things include self-care.

A friend of mine recently said that anyone can be physically fit, they just have to commit to themselves. They have to put exercise on the schedule on the calendar and make it non-negotiable. It could be a 30-minute walk, a yoga class or a cross-fit hour of torture. The way to success is to make exercise as important as getting your child on the bus every morning. No one, after all, wants to get up and go to the bus stop at the ass-crack of dawn, making sure their child goes to school. In this example, if you want to become more active and fit, make it as important as getting your child to school.

It does not have to be exercise; it could be setting a goal of learning a musical instrument or learning to play chess.

My friend’s point was this: find something that engages you and make it a commitment.

This conversation got me thinking, because of course I immediately thought I don’t have time to do (insert whatever I am avoiding here). There is no time left in my day! I then had that rare moment of self-awareness, where I realized it is just as easy to make an excuse as it is to make a commitment.

Thinking back, I have made the effort and commitment to things that mattered. For example, being an elected member of our local school committee. The schools were important to me, so I found the time to commit. I considered it a second, albeit unpaid, job. I put the time in and was rewarded personally, when I saw this work mattered not just to me but to those I served.

So why am I not putting the time into me?

I think this is something every parent suffers from. We have this feeling that we are selfish, or that the children matter or our spouse needs us to do something important or work is calling. It is not purposeful, it is just we blinked and not only has the day gone by, but it was just March yesterday and now we are having people for Thanksgiving. Where did summer go? The days pass by so quickly, we forget those minutes and hours that are lost if we don’t pay attention.

I have decided to build on this idea that by finding one hour a day to keep my mind and body active, it will become easier to maintain the commitment. It will just become a part of my day. Just as putting Bridget on the van every morning is a part of the routine.

I also know that this hour does not have to be a full hour dedicated to Kerri. It can be in 15-minute increments. As simple as taking a 15-minute walk in the morning and repeating it at night. Some days it might be a full hour of writing, to keep my mind engaged and my pessimism in check. Just as every hour is really multi-tasking, a hybrid between work, Bridget, household chores and being a wife, this “hour” I am carving out for myself will not be etched in stone, but fluid. Until I create the routine I so desperately need.

Today was day one. I carved one hour of my 18 hours to give, to walk and write.

I did not blink and lose an hour, I found one.

And I promise, to myself, to find another hour tomorrow.

The rules keep changing

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When your child is diagnosed for the first 5 years of their life with “we know there is something genetically wrong, but not what.” Then you finally get a diagnosis, and you are told it is a genetic disease so rare they don’t know what PACS1 is, but she has it! You learn that parents are your best go-to for information.

Even before Bridget was diagnosed, her therapies were trial and error. I found more information from sharing with other parents in the waiting room what worked for their child and what might benefit my own.

Bridget does not age out of the school system, but already I am learning that I need to be aware of how things change, even before I am ready. For example, we were always that a child of Children’s Hospital is always a patient there. Yet across the country that is changing.

I never imaged that she would age out of her healthcare system.

Which makes sense when I think logically about it. A pediatric cardiologist knows the pediatric heart. They are not trained in the heart conditions and complications of a 40-year-old. This is devastating to the parent who has been cocooned in the bubble wrap of a children’s hospital where their child has been a patient since the NICU. While the adult physician might be the best to diagnose and treat her non-pediatric body, that doctor has no idea how to interact with her 4-year-old mind. This has proven true any time I have taken Bridget to a local doctor, be it an optometrist or an emergency room doctor and nurse.

The adult provider is just not trained in the pediatric mind. Just as the pediatric gastroenterologist is not trained in the adult digestive system.

Even the waiting rooms are not equipped to treat children soon to be adults like Bridget. For example, last month we were in the waiting room at Children’s Hospital. Bridget was having a VERY difficult time. She was in full meltdown mode. Hitting me, while alternatively hugging me. Crying and sobbing after spending almost 4 hours in traffic trying to get to a 15-minute appointment with her favorite GI.

Bridget after 3.5 hours in Boston Traffic

The team at Children’s did not embarrass us, they did not judge us. Instead, they quietly approached and said, “Bridget’s mom, we opened up an exam room for you. We can do her vitals in a quiet space for her to wait for Dr. Rosen”.

Over the summer, when Bridget was adjusting to the catatonia medications, there was an issue obtaining her Ativan. The pharmacy told me “She could not miss the medication without serious complications”. Told me to go to our local ER and explain the medication need. Bridget was having such a difficult time anyway, now we were entering a crowded ER with a triage nurse that was all done with her day. Instead of seeing a child in crisis, she saw a 16-year-old out of control and basically told us they could not help.

There was no empathy (yes, I lodged a complaint with the hospital). There was no understanding that this is not just a teenager who was abusing her mom but was having a serious medical issue that her 4-year-old brain could not understand.

On a less serious note, about 3 years ago we took Bridget to a local ophthalmologist for a routine eye exam. The waiting room was fine. The exam room? Not so much. The doctor is great with teens; we had taken Bridget’s older sister to this same doctor.

But the doctor, while trained on the eyes has never encountered a child with Bridget’s profile before.

Quite simply, adult doctors have not been trained or exposed to those with intellectual disabilities (to my knowledge and recent experiences).

Whereas those of us lucky enough to have been cared for by Boston Children’s Hospital have been spoiled. We have had doctors since birth, or in the most recent case of Bridget’s latest PACS1 complication treated by physicians, nurse practitioners, fellows, lab techs, nurses and even cafeteria workers who look at our children as persons in need of empathy and care.

From janitors to doctors, we have been treated humanely.

I think I speak for all parents whose children have intellectual disabilities and complex care issues that we are terrified of this relatively new change in our children’s healthcare.

This is not simply leaving a pediatrician for an adult primary care provider.

This is leaving home and ending up in a country where no one speaks your language.

Thankfully we have 5 more years, but as every doctor Bridget has seen this fall has already started the conversation about transitioning to adult care, I am not confident that we have those 5 years.

As I talk with parents around the country, I know this is not just happening in Boston but nationwide.

And that is frightening for all of us

From one week old to 16 years old, Children’s has been our safe place, my hope is that in the next 5 years, whomever started this trend realizes the impact on our families and truly designs a plan for our families.

The same…yet so different

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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.

  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

My Mother-in-law’s Curse

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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!

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?

I’ll tell you a secret…

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Shh…I want to tell all the special parents out there a secret:

It is okay to feel guilty.

It is okay to not always love this life we lead.

It is okay to wish your child was typical.

I have this friend, Jenn. Jenn is usually right. She has been since high school. A few months ago, Jenn said “Kerri it is okay to resent this life you are living.”

Typical me, I argued that I don’t have the right to ever be upset with Bridget or this life we lead. I chose this life. I chose to save Bridget in the NICU when we lost her, then multiple admissions that first year of her life and almost every year since.

2009

I am the one who has subjected her to procedures and testing, both invasive and non-invasive. Trying to find a diagnosis, a cure, a treatment plan.

2023

Not knowing at the time, how much more I would be subjecting Bridget to in her fight against PACS1.

2025
2017

This child has had more MRIs, EEGs, lab work and testing than any other person I have ever met. She has triumphed in therapies from learning to eat, to learning how to walk up the stairs. She has conquered everything PACS1 has thrown at her.

From 2014
To 2024

How dare I, for one moment, even brief, resent this life she has fought so hard to live?

Jenn said: Because you have fought alongside her every step of the way. That is why you are allowed to say fuck this, this is hard, this is unfair. Because you think it and fight anyway.

This, my readers, is true friendship. When your friend cries alongside of you. When your friend fights alongside of you. And more importantly, when your friend calls you on your bullshit. When she lets you have the pity party, but tells you when it is time to stop feeling sorry for yourself and start admiring how far you’ve come in 16-years.

Yes. I feel guilty all the time. I feel sad. I feel some days that I punishing Bridget not helping her.

I think that’s normal. As long as those feelings are balanced with: I’ve got this, I will fight for her. I will never give up

So, to you, my fellow warrior parent…listen to Jenn. It is okay to feel everything you are feeling. It does not diminish your love for your child. If anything, it proves that a parent’s love is stronger than whatever disease they are fighting.

2025

Because we love these children despite their difficulties, not because of them.

So, feel whatever you are feeling. Lean on your friends and listen to them.

As Jenn said….it makes this life so much easier.