Tag Archives: bridget

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

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

It’s not all sunshine and unicorn butts

I am usually an optimistic person. It drives my husband crazy that I always look for the silver lining. The truth is, life with Bridget isn’t always easy. Beyond doctor, therapy, school and paperwork there is also just life with a child who cannot express her frustrations.

Recently I was taken aback when I was told that I am doing parents a disservice because I am promoting that having a child with special needs is all sunshine and none of the darkness.  I asked if they read more than one of my blog posts, because I tend to vent quite a bit on our struggles.  Continue reading

It’s 3am and I’m not lonely

It’s 3am, I hear you gasp over the baby monitor. Yes, at six years old you still have a baby monitor. My feet hit the floor before my eyes open. I barrel down the stairs to your room, turning on a hallway light so as not to wake your sister. I open your door to find you vomiting on your bed. You look at me, tears in your eyes disorientated by my sudden appearance. As I scoop you up, you point to the bed and say, “I mess”.

I gently wash you (and your bed). As I redress you I hear you whisper, I sleep mommy. You curl into my arms; secure in your knowledge that mommy will keep you safe. We crawl into my bed; you rest your head on my shoulder and gently rub my face. Sensory seeking as you begin to fall back asleep. I realize at this moment how much you have grown, your toes reaching my knees.

I remember that first day in the hospital, when you would curve into my chest your bottom in the air. You fit into my arms, like you were made for me. Tonight, just like then, you had to have your head just so under my neck. Unlike then your arms were not long enough to wrap around my shoulders. Your fingers could barely wrap around mine.

Boo 1m old in CHB

You slowly drift off to sleep. I listen to you breathe and remember when I used to have to count your breaths. In the semidarkness I watch your chest rise and fall. I remember how scared I used to be and give thanks that you are home in my arms. You open your eyes, say mommy and drift back to dreams.

I wonder what you are dreaming about. It must be nice, I think, as your lips turn up in a smile. I wonder if you are thinking about school or the latest Sophia episode. I remember when I worried that you would never go to school or have dreams. It is nice to have those fears disappear and hope emerge.

I forget, sometimes, how much you have grown. It’s moments like this, at 3am, where I realize you will always be my little Boo.

I am more than okay with that.

Kindergarten doesn’t start for another 5 days and I already hate it.

At the beginning of the summer I finally came to a sense of peace that Kindergarten was going to be okay. Yes, we would be leaving the cocoon of safety we had for four years. My reservations were being replaced by cautious enthusiasm that Bridget would be starting kindergarten in a few weeks. Then it happened. I was smacked in the head (again) that this would not be the easy transition I hoped. Continue reading

It’s the cost

I hate tax season. When I start compiling all the documents, look at our W2 forms and realize where all our money has gone. A good amount to charity, not a great amount, but a nice amount. Money we worked hard for and in David’s case a lot of overtime. Money we are saving for retirement seems to dwindle each year. Vacations become more camping trips and economical. Holidays and birthdays become less extravagant and more meaningful.

CNN reports that the “average cost” of raising ONE child from birth to age 18 is a staggering $245,000. That is a quarter of a million dollars. This is the “average”, according to the report those in the Northeast can expect to spend an estimated $455,000. A half-million dollars and costs are rising. And that doesn’t include what your family may pay for auto insurance, driver’s ed, tutors or college costs (or the cost of your 25 year-old that continues to live with you).

Let that sink in for a moment. Continue reading