More water, less coffee

A week ago, I had my own heart scare.  In the middle of a meeting, I suddenly felt hot, had a sharp pain in my chest and felt as if the room moved.  Perhaps not the smartest move, I decided to sit, breathe and quietly wait for it to pass.  On break, I spoke to a friend and she thought it was probably low blood sugar.  So I had a glass of orange juice and returned to the meeting. When it happened a second time, I had to leave the room – it was like nothing that I had ever experienced.

It’s stress, right?  Everything has FINALLY caught up to me and now that Genevieve was returning back to school and life . . . my body was taking a little extra time to adjust.  My friends and co-workers all in agreement – stress, panic attack, completely normal and not unexpected.

BUT . . . better to be safe than sorry . . . maybe a trip to the ER at MGH.  It was a tough choice – stress, let it pass, sit for a minute and then all would be fine or go to the hospital?  I caught sight of the picture of Genevieve & Harry on my desk and thought what if?  What if this is something more serious.  Better to be safe – so my friend drove me to the ER.

Full work up – cardiac enzyme test, check for clotting, x-rays and more . . . another incident of dizziness and hours spent moving from one waiting area to another.  After everything came back clear, it was decided that this was a rapid drop in blood pressure triggered by dehydration, exhaustion and stress.

So just relax, drink more water and less coffee . . . easier said than done.  If nothing else, it was a scary reminder that I need to figure out how to take a minute for myself now and then.  To find better balance.  While I have not been able to implement it . . .I am thinking about it!

Raising a warrior, not a worrier

Just one week back at school and Genevieve seems to have her first post-surgery cold.  Cough, sneezing and runny nose.  It feels odd to be praying that this is the common cold or allergies.  The last thing she needs is a high fever or infection.

For the past 6 1/2 weeks, Genevieve has heard a lot of no.  No, you can’t go back to school yet, no you can’t participate in dance class, no you can’t go to public places like the movies, no gym class, no monkey bars . . . no no no.  You are still recovering and here are all the things that you are not allowed to do until sometime in the future.

At only 7 years old, I don’t think she understands the why.  Within a few weeks of surgery, she felt fine – she felt like herself.  She jumped off the couch and nothing bad happened, she could read books, spend hours working with a tutor and do homework – why couldn’t she go back to school?

In explaining why, I may have turned her into a worrier.  At first, she didn’t want to tell me that she wasn’t feeling well and then when she couldn’t hide it anymore. . . she spent the next 24 hours repeatedly asking if she was going to be okay.  If this was bad . . .

There is a quote attributed to Marianne Williamson that “Children are happy because they don’t have a file in their minds called All the Things That Could Go Wrong”.  Genevieve has that file, while hers is not as vast as the one in my head; my girl is well aware of things that could go wrong in her life.  She has faced and overcome more than any child should have to and knows that life is not always fair.

So tonight, I will worry and reassure my daughter.  As we approached surgery, we told Genevieve that she “had this” – that she could absolutely do this and that we would be there when she woke up.  Now we are dealing with recovery stress.  Stress when she was told she would have to take a science test on rocks after missing the entire unit while she was out of school, failing her spelling test on words that she last saw at the end of January and now stress because she is coming down with something.

No stressed out 7 year olds at the Blue House.  With her teacher, we are handling the transition back to school and as to the “cold” – it’s no big deal, just a little cold and she’s got this.

It is my place to be the worrier as I raise my warrior.

Bubble Wrap, Lysol and Purell

It is the eve of Genevieve’s return to school.   Her lunch has been made and her school uniform has been dragged out of the drawer where it sat untouched for almost 6 weeks.  She is ready . . . I am not.

My Facebook feed is filled – and I mean FILLED – with sick babies, sick children and sick adults . . . I know that I have a large friend list but being in the double digits as to people that I know who have been to the doctor or ER in the past week seems extreme.  I wish it was non-contagious broken arms or sprained ankles, instead it is vomiting, coughing, flu symptoms, pneumonia, ear infections, fevers and the “mystery virus”.  It makes me want to disinfect my screen and wear gloves to type.

In the midst of all of this, I am supposed to send my 7 year old daughter who is recovering from open heart surgery back to the petri dish that is 2nd grade.  I want to break into the school and scrub down the desks, stand at the door in the morning and evaluate each student and teacher for cold symptoms before letting them enter the building.

Genevieve is returning with a couple of restrictions from her doctor – no contact sports and no hanging from the monkey bars.   So we will keep her out of gym for a week while she adjusts to being back at the school and play it by ear after that.  Keeping her off the monkey bars may be more challenging.  This is a child that spent so much time hanging last year that she had blisters on her hands and then continued to play until the blisters broke.  This was followed by the joy of her not wanting to do her homework because her hands hurt. If it wouldn’t make her miserable, I would insist she spend recess indoors reading a book.  So I will remind her tomorrow morning and every morning in the near future . . . NO MONKEY BARS!

While there is a part of me that wants to keep her home where I know she will be safe for a little while longer, she is ready to go back.  She has reached the point where she is constantly in the mirror and appears to be talking to herself.  My girl has driven her twin brother crazy with demands to play with her.  After being in the house with adults all day, Genevieve is ready to play and after being at school, Harry wants his solitude.  It has led to a lot of fighting and sacrificing on both their parts.   Genevieve has always been my social butterfly and she needs the interaction with her classmates at school.  It is time.

So tonight, I am making a school uniform out of bubble wrap with Purell attached to one sleeve and a Lysol bottle to the other.  Be well.

Friends are the family we choose . . .

There has been a lot of reflection lately on family and all of the support for our Genevieve. My children are blessed with amazing grandparents from their Grandpa Paul and Papa to my parents that put everything on hold to move into my house and care for Harry & Genevieve, filling in the times when it was difficult for Al and I to juggle everything.  I could not have gotten through this without my amazing Mom and Dad.

Unfortunately, not all the experiences have been good.  I had someone comment that he wasn’t “concerned as most” because she was in one of the best hospitals, had a good support network and came from a line of strong women on his side of the family.  Just not what you say to a mom in the middle of crisis with her child.  When it is your child . . . it is ALWAYS a big deal from getting tubes in their ears to open heart surgery.  When you have to hand your child over to someone else . . . it is always concerning.  In addition to that, make no mistake, Genevieve’s power comes from within.  While I admire the women from his family, it was Al and I . . . and my mom that pulled her through this.  We answered her questions, held her when she was scared and pushed her when she just didn’t want to go to the hospital or take her medicine.  It was a lot to ask of anyone – especially a child and she handled it with strength and grace.  While I was not allowed to respond previously, I will here – because I write for me.

Most of all, this has taught me that friends really are the family that we choose for ourselves.  For a long time, I was devastated that our friends seemed to care more about our daughter than some of our family.  People that have not reached out or made any real effort to see Genevieve during this time.  I don’t care what you may have against us, you don’t take it out on our children.  Al has also tried to silence me . . . I won’t allow anyone to treat my family poorly to maintain peace.

With the support of the family that I choose, Genevieve will never be alone.  Those that have sent care packages to make her smile – from near and far, some with faces that I only know on a computer screen.  All those that take a moment from their day to send me a text or ask how I am doing . . .co-workers, friends from high school and college that I haven’t seen in decades, the wonderful team at Harry & Genevieve’s school.  My friends that drove hours to entertain Harry & Genevieve so that I could have a minute to breathe, that plan playdates and keep me heavily caffeinated after weeks of sleepless nights.  So many people make up Team Genevieve and the support carried all of us through her surgery and beyond.

To those that are struggling – build your network.  There are good people in the world and you don’t have to go it alone.  If you are blessed with an amazing family – people like my parents – then supplement it with the family that you choose.

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Team Genevieve

 

“I want to eat candy, I want to be rich and to live in a castle”

And I want you to be well.  Genevieve, my baby girl – my only girl, all I want is for you to be well, to be healthy.  The road to recovery is not without its challenges and this journey is weighing on both of us.

Tell me about just how unfair life is . . . that you can’t eat candy whenever you want, that you want a house with your own room, your own bathroom, your own changing room, your own play room and your own room with a television, Netflix and no bedtime.  That you want to eat cookies and no vegetables.  I can handle all of these complaints.  So, I tell you that life is unfair for me, too.  That I don’t want to go to work.  I would rather stay home and play with you all day.  You give me that beautiful smile and for a moment, I feel peace.

The true struggle is not the size of the beloved “blue house” that we call home.  It is that you cannot yet go off to school with your brother.  That you are forced to work one-on-one with a tutor while Harry plays on the iPad.  It is that I limit the public places that you can visit and that I am constantly telling you to rest and drink more water.

Fighting me on taking your aspirin a day exhausts me.  “Why?  Why do I have to take the aspirin?  What happens if I don’t take it?”  Telling her that it prevents blood clots and a heart attack isn’t a conversation for a 7 year old.  Nothing about this is for a child.  I tell her that if she doesn’t take it, that she could get sick.  I can see the wheels turning, “how sick?” as she weighs whether or not it is worth skipping.  This is not a negotiation – Genevieve takes it because I said so.

As much as she tells me she is better and should be allowed to return to life, there are still too many moments that remind me that recovery is a journey and we cannot skip forward.  It is when all color drains from her face, her eyes lose their sparkle and she stops talking a mile a minute.  When she complains that her body aches, that her head hurts, that she feels nauseous or dizzy.   Genevieve, it’s okay to push your limits just listen to me when I beg you to pause.

Then there is the night – when her mind works through all that she does not have the words to express.  It is as if she is haunted.  Sleep walking, talking, nightmares and more.   I remind her that she is not alone.  That she will never be alone and if she needs me that she can come and find me.  I will snuggle with her on the bottom bunk and spend the night listening to her breathe.  As the terror takes over, I will place my hand on her back and push the fear away.

While a castle, being rich and candy every day sounds nice, all I want is for my Harry & Genevieve to be healthy and happy.