Tag Archives: books

The sweet without the bitter

When my eldest graduated and went to college, it did not bother me. This was what she was supposed to do. I didn’t compare it to Bridget. I never thought, oh her sister will never. I do that more with Bridget’s peers. The ones that she left behind when I decided to pull her from public school. When I see the postings of her former friends getting their licenses, going to homecoming or prom I will be happy for them, but also think if I did not make the decision to put Bridget in a segregated school, she would have been included. I am sure next year, when her peers are going to senior prom, college tours and graduating, this weekend will hit harder. I am sure there will be moments that I wonder…if only. If only I had left her public school. If only she was typical. If only…

There have been moments, where I have done that with my own girls. It is a little different because of the age difference. If they were closer in age (or Bridget was older) those moments of if only might have been more frequent. With my eldest, I’ve tried really hard not to compare their lives. First, it is unfair to Abbey. I never wanted Abbey to feel like she should not because her sister could not. Second, I am human. So of course there were moments when I thought why won’t you play guitar, don’t get your sister will never? Honestly, I tried but I was not always successful at stopping those wayward thoughts of being sad that one child could and another child would not.

Then high school graduation and college came into our lives.

Everything changed again. But it didn’t hurt. It was complicated. Suddenly my nanny was gone. We had to learn how to live our lives without the added support. We thought how lucky we were that we had that time of being able to escape at a minute’s notice because the sisters were together. We began doing trips as a trio not a quad. We began to see what our lives would be for the rest of our lives. Where we are parents to both a fully functioning adult and a forever preschooler. As the college years went by, less summers were spent at home. As it should be, as any typical college kid would do. Their world expands, while ours stayed constant.

The one thing I worried about, the day we left Abbey at the dorm and drove away was would their bond remain? The girls had been devoted to one another since the moment Abbey visited Bridget in the hospital.

I worried what would happen to their relationship. Bridget refuses to talk on the phone or FaceTime. Would her sister be able to understand her language if she was not constantly exposed? Would Abbey sense a freedom that life without a disabled sibling gives you? Would she begin to put distance between them, not because she did not love her sister but because the world is a very big place and she was just beginning to explore it.

Of course, I should have known better. The minute the girls are in the same space, they are just as attached as they were back in the NICU. Abbey has always known that one day her sister will be her full responsibility. She understands that her life will change (again) once that happens. She did not leave Bridget behind. She is living her best life (as she should) balanced with the love of her sister that is her priority, no matter where in the world she happens to be visiting.

It is quite sweet, watching the girls today and seeing how their love has grown yet remain steadfast all these years. There is no bitterness that one child is living their best life and the other is not. The truth is both girls are living the lives they were meant to live.

The life of two sisters who most would think were on different paths, but instead are living their best lives together even when they are not in the same room.

The moment you hear “I hate you”

I’m not sure if this happens with sons, but when you have a teenage girl at one point in their life you will hear the dreaded phrase “I hate you”.

What I never expected with Bridget was to hear those words. First, because I truly don’t think that she understands hates. Second, she cannot articulate the most basic emotions that she feels.

Yet it hurts

Today was a great day, until it wasn’t

All she wanted for dinner was beans, (FYI B&M Black Beans) until they were cooked and then were too “cold” except they were actually too hot. That turned into her hitting her head on any hard surface (including my shoulder) and words I did not know she knew

And then I thought about my oldest. How there were moments during her teen years age years where I totally loved her but at times did not love her.

And I am sure there were times my eldest loved me but thought I was the stupidest person on earth.

This year has been difficult for Bridget, and us as parents. There is a medication regimen that we are terrified she will not adhere to if it is not

us administering. While we have never had a routine, full disclosure, as awesome as her dad is, if I am not here at night she sobs for hours until I tuck her in.

Quite frankly, we are balancing not creating behaviors with creating an environment where Bridget thrives.

It is a delicate balance. Catatonia continues to keep us humble at the same time it keeps us alert.

To the friends that have offered us respite, know it is a Bridget issue and not a you issue.

We, as a family are doing the best we can

At the moment she is doing incredibly well at school and saving her meltdowns for me, her safe plan to land

And we are okay with that, because we know that this is hard….but not as hard as waiting for her to roll over

Because last week instead of being on her IPad she drew circles and was happy

and I am balancing let her be happy in her world while figuring out how to keep her in mine

So when she says I hate you, I hope she feels the love I feel for her

Ten Things

This has been a better week than most. Maybe because I had a long weekend away that was not only made my work week shorter but allowed me to step away from the WIFI and cell phone. And there are at least 10 other things that I am thankful for this week:

  1. Laughing at a picnic table, in 40-degree weather, declaring that guys don’t want to f*ck skunks (if you know you know) among other discussion absurdities at almost 1am. And not apologizing to our other camper friends for keeping them up with our giggles. Instead saying; you should have joined us if you were awake 🙂
  2. Enjoying a bottle of wine (each) in a friend’s camper as we remembered friends lost too soon and deciding that if we were just left in charge of the world, life would be perfect.
  3. That last night after having to leave a retirement party 4.2 minutes after I got there because Bridget was triggered by some unknown something, today I spent almost 3 hours at a Dunkin’ with her as I caught up with another non-typical mom. We laughed; we cried and created a stronger bond with an ally in this unexpected and unasked for life.
  4. That I have a boss that not only encouraged me to take the extra-long weekend, even though I’ve had so many days off this year because in his words: Those were for medical appointments, this is for you.
  5. That a friend called me out for “losing hope” and reminded me that I am not losing hope but reimaging Bridget’s future.
  6. That I spent 2 hours talking on the phone with my PACS1 friend from Australia. What was supposed to be a quick chat turned into a really informative conversation and an agreement that we cannot let another year go by without another one.
  7. That when I text a friend that I haven’t corresponded with in ages asking if she was up for a bit of “snark”, she not only said “hell yes” but then texted me throughout the night as we caught up on one another’s lives.
  8. That #6 & #7 reminded me that I have not done a great job of keeping informed about what has been going on in my friends lives. That this reminded me that I cannot self-isolate but be there for others. And more importantly, that even though times goes by too quickly that does not mean too much time has gone by to reach out to what could be a lost friendship, and instead recenter myself on why these connections are not just a band aid but a vital part of my life.
  9. That Bridget’s latest medication regimen seems to be working. She is having more laughter and less tears in her day. Yes, she is stimming all the time, and we are not back to baseline (yet) but my girls is slowly coming back to me.
  10. That while I mourn the loss of summer, I am so enjoying moments like this.

Ignore my attempt at trying to keep basil alive HAHAHAHA