Tag Archives: friendship

Milestone Envy

When Bridget was younger, it was so easy to celebrate the milestones that she worked so hard to achieve. She might not have walked, rolled over or jumped on the developmental scale like her more typical peers…eventually she mastered them.

Bridget at field day around age 7. When we never thought she would be able to walk, she hoola-hooped!

When your child is disabled, you start celebrating the tiniest milestones (she ate without choking!) and overcoming at one time seemed like a skill we would have to give up on. And then later once again, her proving us wrong. It would just take more time and be done in a way that we never expected.

With Bridget’s sister, I have always been laid back when it came to transitions. Going from pre-k to kindergarten? That is supposed to happen. No tears. Turning 16 and getting her license. That is the natural progression. I would have been more upset if she did not get her license. When she graduated high school, she had four options: college, a job with an apartment, the military or not my house. And yes, I not only had that conversation with her but with her high school guidance counselor.

With Bridget, her obtaining those “smaller” milestones that were celebrated seem so far away.

Because at some point, you realize this child is never “catching up”.

Bridget will do many things, but she won’t ever get a driver’s license. She will never go to college, and she will never get married or have a family of her own.

She will never get that “first job” that teaches her how to be a member of a productive workforce. She will one day get a job, but it will be more of a life skill and not a lifestyle choice.

Bridget will never get married or have a family. She will always be a part of a family. Living either with us or her sister. But Bridget will never know the joy of seeing her child’s first steps to them graduating college.

Bridget will not go to college. Now with her sister, no one was more surprised that I was when she decided to go to college. I didn’t expect it to be on an iceberg. I didn’t expect this child who wanted to quit school in third grade, become a student on the Dean’s list. Bridget will never get to shock me that way. She will stay in her special ed program until the day before her 22nd birthday. She will not live in a dorm, have a first love or find her career.

This isn’t anyone putting limits on Bridget. It is the reality when your child is forever 4-years-old. That reality keeps getting closer, the older Bridget gets.

Most days that’s okay with her dad and me. Because we do truly know who this child is, she is our forever child who will do great things and bring tremendous joy to not only our lives but to just about everyone she meets.

Then there are those days when you see her classmates from when she was in a typical public school go to prom, get their learners permits and start touring colleges. When we see the photos of homecoming, dances and sporting events. When we are at a restaurant and our hostess or waitress used to be in kindergarten with Bridget.

And in those moments, it hurts just a bit that I cannot tell her IEP team that her choices at graduation are college, the military or not my couch.

Even though we don’t really mind her being there.

Small moments, big results to keep myself sane

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.

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 wish….

I wish I could always protect Bridget from the mean people in this world.

I live in a bubble, to be honest.  I have a tremendous village.  Bridget has incredible people in her life that accept her for the person she is, with love. The acceptance she receives has allowed her to attend summer camps, be an active member of  the general education classroom, ride the big yellow bus like a normal kid.  I truly believe that our village has allowed Bridget to be an important part of our town, of our society and allow her a sense of being a normal kid.

Not a different one. Continue reading

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

He gets her

Bridget has this super cool friend, Charlie.  Charlie is awesome. He walks her to class every day. He watches out for her at parties. Charlie is the boy that if Bridget was a typical second-grader I would be joking with his mom that I hope he stays sweet and takes her to prom one day. Continue reading

Rare, but together we are mighty

When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.

I spent the first five years of Bridget’s life without a road map.  Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.

Then we were diagnosed with PACS1.

Journey over, right? Um how about it was just beginning. Continue reading

If we were having a glass of wine

If we were having a glass of wine, I would share with you that I am excitedly looking forward to Saturday. It is kind of weirding me out, the fact that I am actually going to attempt to run 13.2 miles (hell yes, I’m counting the 0.2). I know realistically I will walk some of it, but I’m okay with that.

I would remind you that my first goal was to finish the race without being last. That goal evolved to just finishing the race. Now the goal is to finish the race without needing an ambulance.  I would promise to let you know if you need to attend my funeral. I would also promise to stop talking about the race. Continue reading