Tag Archives: bridget

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.

Ten Things of Thankful

There has been a lot going wrong in our lives this year, but there is so much more going on to be thankful for this week.

  1. That Bridget has a team of Doctors that care about her as a person and are not treating a disease but how that disease impacts every aspect of her life.
  2. That I have a job, a boss and a team at work that understands Bridget has to come first and allows me to work not only a flexible schedule but a remote and sometimes from the PACU schedule.
  3. That there are friends I have not kept in contact with or up to date with Bridget’s recent struggles understand that it is a me not them thing.
  4. That Jenn doesn’t need chemo.
  5. That even though I am a people pleaser and it is incredibly difficult for me to say “no” to an invite, I have become more comfortable with answering: I would love to but Bridget is having a really good day so I am going to stick with our plans for the day. And that my friends and family understand that response.
  6. That I have friends that let me ugly cry, but not wallow in self-pity.
  7. That my eldest is living her best life and while I miss her not coming home this summer, this is how it is supposed to be.
  8. That through this really difficult time, when we have to put Bridget first our marriage isn’t perfect, but it has not imploded.
  9. That when I had to remove Bridget from a retirement party, our friends didn’t judge but were compassionate and understanding
  10. That this happened for the first time in months

Dear Bridget

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.

Continue reading

We can handle the truth

Dear Teacher and/or Educational Support Personnel,

You do a wonderful job of caring for our children. You nurture them. You hold a parent’s expectations in check. You challenge the child and keep the parents honest. Yet sometimes in your quest to be empathetic to our families, your kindness becomes a falsehood. Especially for parents whose child has a special need. You try to understand how difficult our life can be. You want us to focus on the positives, the milestones that are achieved and the goals that are finally captured.

You also lie like a rug. Continue reading

The games we play

All parents wonder when their child will accomplish a goal.  Parents whose child has a disability play a vicious game with themselves. The game is called, “Will my child ever….”

Will my child ever roll over?
Will my child ever stand up?
Will my child ever say my name?
Will my child ever speak?
Will my child ever walk?
Will my child ever say she loves me? Continue reading

I’m okay with imperfect holidays

I used to be the Clark Griswold of Christmas. I decorated every room in the house. I put ribbons, bows and labels on gifts. One year each member of the family had their own individual wrapping paper. I was the hostess with the mostess, a caterer could not put on a better meal.  I knew exactly what I was getting everyone and planned out the holiday season to the moment. Each gift was chosen with thought and care. There was a time when I would shop throughout the year and remember where I put the gifts. Continue reading

When First Grade is more

I understand it has only been half a year. However I want to go on record (and brag) that the combination of Bridget’s special education teacher and (epic) first grade teacher is more than I could ever had hoped. The first grade teacher not only understands inclusion, she “gets” that Bridget isn’t the class pet there to give hugs but to be a part of her classroom. Though Bridget’s hugs are a hot commodity. Continue reading

The Santa Conspiracy

Bridget despises Santa. When I say hate, I mean only second to the thought of snow. It started at a young age, when a grandmother would not take no for an answer. I made the photo that year’s Christmas card in revenge.

Continue reading

For the uninitiated, this is what it looks like

I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment).  I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.

For the uninitiated, this is what a meltdown looks like. Continue reading

Sniffles should be a piece of cake

A year ago Bridget and I almost spent Christmas in the hospital. She had been so healthy and then BAM! A week before Christmas she was so sick we almost lost her. Again. That she was discharged on Christmas Eve was all the gift we needed.

2015 has been a good year for Bridget. No hospitalizations. Her doctor’s visits have been uneventful. Kindergarten started and she has made friends. We are merrily living our life and I was just starting to feel like we did not just survive 2015. We triumphed over it. Continue reading