Breaking Up Is Hard To Do!

Down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Breaking up is hard to do

Well, we've finally reached the stage in our lives where Lydia needs no in home healthcare nurses.  We probably reached it awhile ago but Mom and Dad still needed it.  It seemed drastic to rip the band-aid off something that we had known for so long.  We've slowly transitioned from 24/7 nursing care to 1 day a week and now none.

When Lydia came home from the hospital she had 24/7 home healthcare nursing.  The day nurse would report at 6am and the night nurse at 6pm.  Over the course the first year we transitioned down to day nursing and overnights, having the evenings and weekends to ourselves.  Once her trach was removed we transitioned to only daytime nursing hours while we were at work.  

When Lydia started preschool in August 2018 she still had 3 days at home with a nurse and over the fall and winter we've cut that back to one day a week.  I always get to a point where I just know it's time.  I've done that with each transition in Lydia's life.  There is a feeling.  Last night I had that feeling and I talked it over and knew.

Lydia will start attending preschool 4 days a week starting Monday, March 18.  We were waiting for April but I'm not sure why.  The band-aid is gone!  It's so freeing.  This will be the first time in 3 years and almost 9 months that we have not had nurses in our home.  No cars parked out front.  No reporting out in the morning and evening.  No paperwork to sign.  No basket full of binders and charts in the living room.  

Thank you so much to every nurse in the hospital and in our home that has cared for our sweet Lydia.  Especially our home healthcare nurses that were with us for a long time or a short while, you are part of Lydia's childhood and we will not forget your love and support.  Melinda, TJ, Barbie, Carolyn, Celia, Chelsea, Deb, Eunice, Fallon, Mark, Nora, Pat, Stacey. 

 

Big Girl Kind of Day

Sunday was a BIG day!  

We took the front off the crib and made a toddler bed!We are late to this game, as most children would have been climbing out of their cribs for months or years now.  Lydia is three and a half years old and has only climbed out 3 times.  With her low muscle tones and small size it's not easy for her.  So we just did it! She went to bed fairly easily and only woke up once last night. 

Lydia working at her desk.  Her work basically consists of crayons, markers and stickers.

AND WRITING HER NAME UNPROMPTED ALL BY HERSELF!

Goodbye, Friends

We had a pizza party Saturday night, the last night our neighbors would be living across the street.  They are moving out of state and we are terribly sad to see them go but happy for their opportunity.  

All day Sunday we'd look out the window and expect to see their truck or the smoker in the driveway.  Nope.  We kept expecting to see them outside playing in the sunshine.  Nope.

See you real soon, friends!

Things you may not think about, but I do.

Forms.  

Yes, basic forms.  

Signing Lydia up for school, gymnastics, school of religion.  

Forms.  

"While I’m pretty sure no parent looks forward to filling out forms, there’s one question that always gives me anxiety. When the question is asked on a preschool get-to-know-you form, it looks like this: “Medical information you should know about me…” It sounds like an easy question, right? For most, perhaps so. Not in this situation."

"How can I explain my daughter’s medical history on two lines?"

"I will try to stress the importance of her medical history without letting it overshadow who my daughter is — because she is not her medical history."

https://themighty.com/2015/08/how-to-explain-digeorge-syndrome-on-preschool-form/

Sometimes fear still wins.

"Somehow along the way, I have had to learn that vulnerability and strength go hand in hand when you are the parent of a child fighting a disease. I have gained strength by allowing myself to have those weak moments where I just had to let it all out to whoever was right there and willing to listen."

"I do my best every day to push past the fear and allow myself to look into her future. Our future, together as a family."

"I still fail… all the time."

"Sometimes fear still wins."

"But I keep trying over, and over, and over again to be the best mama I can be, during the most vulnerable time of my life."

https://themighty.com/2019/01/parent-congenital-heart-disease-vulnerability/

Medical Mama

She is tired, but not weak.

She has broken down, but still keeps pushing.

She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.


She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it.


https://themighty.com/2018/12/who-is-medical-mama/#_=_

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I'm not ready to write for you although there are things to write about.  We are all healthy and okay but it's just a heavy time for me currently.  I'll be back, maybe when the weather hits 50 degrees. :-)

In the meantime, please enjoy Lydia's raging style.  She's an icon.

        

       

She now asks to go to the mall so she can play with the washer and dryer at the American Girl store and ride the Kung Fu Panda merry-go-round.

She wastes ice cream.  I don't believe in that.