Monthly Archives: November 2016

I’m thankful for more than wine

If we were sharing a glass of wine, I would tell you I am so very thankful…

I’m thankful that it has been over a year since Bridget’s hospitalization.

I’m thankful for the teachers who continue to be innovative, patient and kind in how they teach both my girls.

I’m thankful for the friends that live through the woods who are up for a last minute dinner (and better yet, provide it!).

I’m thankful for pancake breakfasts and late night texts. Continue reading

Don’t ask what you can do…just do

Have you seen this Facebook post?

Everyone says: ” If you need anything, don’t hesitate, I’ll be there for you “… so I’m going to make a bet (with being optimistic), I’m asking my ” you can count on me friends ” to put this on their wall. You just have to copy (not share). I think I know who I can count on… and I’m sure it will be less than 20!! Write “done” in comments when you’re done. It’s mental illness awareness month and I’ve done this for a friend… I pride myself on being there for my true friends. Continue reading

When this week is better than last

When this week is better than last, it is time to share a glass of wine.

If we were sharing a glass of wine, I would tell you how awesome it is that we decided years ago to give to charity rather than one another on our birthdays. Your birthday present was to feed a child on the weekends. I hope you had a wonderful birthday and am thankful that you and I agree that giving is better than receiving. Continue reading

When you don’t land where you planned

When you first enter a Children’s hospital, scared out of your wits, most likely you will see a plaque or a friend will send you the link to read the poem, Welcome to Holland by Emily Perl Kingsley. You find solace, at first. Knowing that another parent understood how you are feeling at this moment. At this moment when your child is not the one you planned but the one you must make heartbreaking decisions.  You prepared for one journey and ended up not even close to where you planned. Continue reading

I think Bridget needs some clarification

Bridget’s class has been working on feelings. I think it is great, I hope it will minimize her frustration level when she can tell us how she is feeling. It will be wonderful when she will be able to tell how her sister, her peers and those in her life are feeling.

I also think she is a tad confused.

At her latest ER visit the nurse asked Bridget how she was feeling: “Happy”.

I tripped and face planted (not out of the ordinary), Bridget: Mom is happy.

Abby had the throw up bug. Bridget asked, “Abby happy?”. I said no she is sick. Bridget: sick happy.

On the upside she is happy.

I’m not going to teach her disappointed.

I need a drink (seriously)

If we were having a glass of wine, I would tell you how thankful I was for my mother. She knew I was having a weekend from hell and dropped off Chinese food.

If we were having a glass of wine, I would tell you how thankful for my two cousins who have recently reconnected with me. I have missed them and hadn’t realized how much.

If we were having a glass of wine, I would tell you how much it sucks when your child is sick and you don’t know why. I would remind you how thankful I am that she still wants to lay in my arms after she has horrific testing.

If we were having a glass of wine, I would tell you I hate the IEP process, yet I am thankful for Bridget’s teacher that talks me off the ledge. Continue reading

Never doubt the power of parents

When I started this blog in the summer of 2012 I began a journey of discovery.  I did not know one person who was in our situation. Where you left the hospital with a brand new baby and were told they had something wrong but they did not know what it was or what it would mean for the future. It took four years of feeling alone before I discovered the world of blogging.  Then I met Kristi, another mom in a similar situation.

It would take another two years of blogging before a kind reader would lead us in the direction of a diagnosis.  We were told that Bridget had a rare syndrome, that she was the only third child discovered and the first female. Thankfully the power of social media is faster than medical research. Our family was welcomed into the PACS1 family and a brand new journey emerged.   Continue reading

From this day forward…

When you get married you promise to be with your spouse from this day forward for the rest of your lives.  David and I have come to the realization that since Bridget’s birth she will be with us from that day forward. I know, you always have your children with you. When you have a child with a disability that statement has a different connotation.

The weird part is, when Bridget was smaller and at her most fragile she was actually more portable. As long as she was in a carrier, she was content. Now that she is older, she is less likely to pass as a precocious toddler. Now when I carry her and someone asks her age I receive that look. The look that you are a bad parent babying your first grader. Until you talk with Bridget, unless you know her, you would not immediately know she was not your typical seven year-old.  Continue reading