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​Lessons From Lucy

The biggest lessons from the tiniest person

​Laughter is the Best Medicine

8/25/2016

5 Comments

 
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Living with a four year old can be a wild ride.  One minute everything is fine, and the next it is as if the world is ending. 

Last week, I was telling V that I was going to make spaghetti for dinner.  Meal times are always a struggle with a picky eater and little one that loves to be in control, so the day before I let it be known that spaghetti and meatballs was for dinner tomorrow. 

Protest ensued.  V made it clear that she didn’t want sketti and meatballs, she wanted macaroni and cheese (again), as that is always the first preference.  I tried the strategy “I understand it’s frustrating that I’m making spaghetti and you want macaroni again”.  Protest intensified. 

At this point, I’m reminding myself in my head to stay calm.  Breathe, count to 5.  While my little internal calming session is going on, V takes it upon herself to reach for the sketti noodles to put them back into the pantry.  What she doesn’t know is that the end of the box is open. 

You can imagine what’s next………yep, sketti noodles flying everywhere!!  At this point the deep breathing and counting is blocked by the color red. 

I pick her up and head to her room.  It’s time for her to calm down.  It’s time for me to calm down.  What we are doing now isn’t working.  And for me, that was the sketti noodle that broke this camel’s back. 

My mom was fortunate enough (sarcasm) to witness sketti-gate.  She says “You’re going to be picking up sketti noodles forever”.   Yep.  She’s right.  At that point she goes upstairs to be with highly upset 4 year old. 

I scoop up some of the noodles, leaving some for V to clean up.  I calm down, she calms down and then she helps clean up the rest of the noodles.  Suddenly sketti and meatballs is the best thing ever for dinner.  Well, except mac & cheese but I don’t dare remind her of that. 

About half an hour later, over a glass of wine, my Mom and I have a real good laugh over the flying spaghetti noodles.  I decide that every piece of spaghetti noodle that I find in the coming days will be my reminder to find the humor in these intense moments while they are happening. 

And then I think back to how laughter was what kept us going last year.  With Lucy’s diagnosis we had so many unknowns.  Would she need a feeding tube?  Surgery for her incomplete palate?  When will seizures start?  Will seizure medication wipe out development that she worked so hard to achieve in therapy?  We had 6 specialists to follow up with.  We had very little uninterrupted sleep. 

Stress does things to you that you have very little control over.  And time was so precious to us.  We wanted to make positive memories as a family.  We wanted to experience the joy of having another baby and a little sister for V.  Stress got in the way sometimes.  And there were some very dark days on our journey. 

But, there were also some really great moments that I will never forget.  In fact, I will hold those moments in my heart and soul forever.  And I never would have been able to have those moments without keeping my sense of humor.  
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Our condo was a duplex down, kitchen/living room/den on the main floor, bedrooms and both bathrooms downstairs.  Bathrooms downstairs made potty training even more of a nightmare.  We relied a lot on a free standing potty on the main floor. 

One morning after getting V out the door with her Dad for school, I sat down holding Lucy and sighed.  I looked down at the floor, and what did I see, a turd.  Yep, turd on the living room floor.  And in that moment, I laughed hysterically and said to my Mom, “Wow, you know it’s going to be a great day when you look down see a turd on the living room floor”. 
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I was tired, scared, uncertain, already grieving, and in that moment, all I needed was a good laugh.  I learned that choosing to see the humor in things is something that I do have control over.  
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Grieving with PTSD and trying to function in this world again is a challenge.  What keeps me going?  One thing is laughter.  It always has. 

I inherited sarcasm from both sides of the family.  I’m a people person and every once in awhile I meet someone that I don’t click with.  It always takes me a bit to figure out why, but then it hits me, no sense of humor.   And I think, what am I going to do with that?  Then I make it my mission to get a good laugh out of them.   

 I’m lucky to have a 4 year old that provides multiple opportunities a day to laugh!!  And I think she has my sense of humor, HA!
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So if you find yourself stressed, annoyed, angry, remember to slow down, stop taking yourself so seriously, and laugh!  It truly is the best medicine.  
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5 Comments
Tisha
8/25/2016 12:56:38 pm

I love reading your blog Lou, so inspiring. Love you

Reply
Lou
8/26/2016 06:23:13 am

Thank you! It always feels good to "get it out" ya know? And keeping Lucy's memory alive is extremely important to me. Thanks again for reading!! Love you

Reply
Pia
1/31/2017 07:24:18 pm

Hello, and thank you for your blog. Im not the type to usually comment ins blog for someone I don't know, but your words have reached across the seas to my little family in Australia. I have a little girl like your darling Lucy and she is just coming up to 5 months old.

It is so hard to find information about other people's experiences with this tragic condition and I am can really relate to your blog post about all the unknowns. That is the head space we are currently living in - although taking your advice and trying to keep our sense of humour and to find some laughter and joy in the everyday.

I totally understand that's it's painful to go over the past and I have no expectations that you will respond to this comment but I wondered is any advice or knowledge about how your story unfolded that you wish someone could have told you before hand? Is that something you could share with us so that we have the benefit of that little bit of insight? You spoke about making the difficult decision not to stay in the hospital - we have already decided that we want our little darling's life to be as least medicalised as possible - is that the sort of decision u had to make?

Thank you for your time and no pressure to respond, I'm just searching for some answers to our future which is really impossible to predict. Courageous blogs like yours provide some clues and comfort along the way. Thank you

Reply
Lou link
2/1/2017 05:32:02 pm

Pia,
Thank you for reaching out. Congratulations on your baby girl! And I'm sorry that you are going through this difficult time. We will most likely never meet in person, but please think of me as your advocate. Do not ever hesitate to reach out with a question, concern, whatever it may be.

I think you will have to continue to follow your heart with the decisions you will be faced with. I talk about following your instincts, which I believe is our head and our heart. For me, my heart spoke first. And my head helped me manage care for Lucy.

Seek out as much support as possible. Through palliative care we had weekly nurse visits to the house. We also had therapists coming to the house through early intervention. This allowed us to take care of Lucy's immediate needs and development, but also ask questions and inform ourselves about what was to come. When Lucy started having apnea episodes, most likely caused by seizures, we landed in the ER. The palliative care physicians there helped us sign her DNR and take her home. It was then that her hospice care began. I know it is dreadful to think about a DNR for your child, but for us, it was also liberating.

Be present with your little girl. Soak in every snuggle, every smile, every moment you have. Talk to her, tell her everything you want her to know. Make wonderful memories. Take pictures. Say no when you want to, your time is precious right now!!

I'm not sure if that is helpful? If you have specific questions that you want to ask, you can email me or message me on FB? loubird22@yahoo.com

In the meantime, stay strong Mama. Your strength has brought you this far and you will continue to find even more within yourself.

Reply
Pia
2/2/2017 07:31:19 pm

Thank you so much for your beautiful words. I honestly wasn't expecting a response and your thoughtfulness and advice has me a little teary! I would love to email you directly if that is ok and thank you for your email address. I've temporarily disabled FB for the time being so email is prob easiest. Perhaps u can bookmark my email address so it doesn't get caught in your junk mail. I am pfsaha@gmail.com. I also understand how hard these things can be to talk about and the importance of protecting your own heart and mental health - so please don't worry if it feels like too much to communicate with me or answers questions etc.

Thank you again for connecting with me - sending a big virtual hug




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    Author

    My name is Lou and I am a mom of two girls living outside of Chicago.  I never would have imagined this, but our oldest daughter is at home and our youngest is not.   She will be in our hearts forever.  Lucy was an amazing soul and we continue to learn lessons from her today.  
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    With some inspiration from a Mom I met online sharing the same dreadful experience and some help from friends that are the best you could ever have, I'm starting this blog.  I want to share my story with loved ones, acquaintances, total strangers, anyone that wants to hear it.
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    This is a window into my personal grief journey. I hope it  proves that it is possible to get back up after you’ve been knocked down so hard, that you think you will never stand again.


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