Friday, June 18, 2021



It's been a busy week, again, or still, not sure which.  I'm not exhausted tonight though which is very nice.  The garden is coming along well, flowers are blooming, peas are climbing and grass is growing.  


Heidi at the off leash.  

I moved this clematis this spring and one flower bloomed.  It's doing well though and I'm hoping next years it will have tons of flowers.  Right not it's just getting itself re-established.  It seems happy where it is though, less competition and more sunlight.

Jack and his poppa have water guns, so does nana.  There was a lot of shooting going on last weekend and much screaming by nana when she was hit by the water gun.  For a child of two, he has a surpisingly accurate shot.

I spent Wednesday morning with Katie.  It was her birthday and we had a zoom meeting with a geneticist.  It was a two year wait for the appointment.  We are going ahead with genetic testing for Katie to see if we can find an answer for what caused her disability.  She had genetic testing done twenty-four years ago but things have changed since then.  

The doctor was very nice and patient.  She wanted to see Katie, which was why it was a zoom call.  Katie hates screens.  She hates TVs, phone, computers and tablets.  She doesn't like sitting and looking at them either, and she really hates when I pay attention to a person on the computer and don't give her 110% of my attention.

Katie threw toys, tried to go through my purse and my work bag.  She opened drawers and pulled things out of them.  She took her pants off and sat on the floor.  She grabbed the cat and held/squeezed the cat until the cat bit her and then she let go of the cat.  She opened up the freezer and pulled out a frozen muffin, nibbled on it and then threw it on the floor as well.  

At some point the dogs found the muffin and they carried it to the living room where they had a fight over the muffin.  They startled me when they started fighting and I said, "Jesus" very loudy.  Then Katie came up behind me and hugged/choked me.  

The whole appointment was very exciting and the doctor was very patient.  

Now Katie, my ex-husband and I all need blood work done.  It will take up to a year for the blood work to come back and even then, they only find an answer about 30% of the time the doctor said.  We also agreed to have Katie's blood samples enrolled in clinical trials and research into rare diseases.  They can't fix Katie but it would be nice to know what happened to her.

At the end of the appointment I was frazzled and I'm sure my blood pressure was elevated.  That's how I lived for years and I find I just can't do it anymore.  We stopped by the dog park and McDonalds on the drive back to her house.  Not an amazing birthday but it's all I could manage.  I did buy her the biggest balloon I could find and she loved that.  Next year my baby girl turns thirty and I will turn sixty.  WTF.


  1. I am so glad that there is space and time in your life for water gun fights with that little boy.
    Also glad that you do not have to do Zoom calls with a geneticist and Katie very often. That sounds like something that would elevate your blood pressure for certain! But I commend you for trying to unravel the mystery. It would be so easy just to let it go.

  2. Wow, that sounds like an eventful morning! It's a shame the results take so long, but it's great that you're getting this done. At the very least, you will know that you did all you could to get some answers.

  3. Happy Birthday to Katie! Amazing that you and Katie were able to visit with a geneticist on Zoom. No kidding that much has changed in 24 years. I'm wondering if the testing you are doing may contribute to the research that helps other children and their families in the future.

    Not having had children of my own and having not had the opportunity to see my only nephew when he was growing up (except on rare occasions), I enjoy witnessing the life and times of a 2 year old who loves and is loved by his grandparents. Jack is a joy. So are your photos.

  4. I do hope you can get some answers through the geneticist. I know it won't change anything for Katie but I can only believe having some answers might help a little. And The big guy and little guy look like an ad for Ghost Busters!

  5. That iris is beautiful!
    With the testing you are having done, perhaps a type of meds or something else can be developed that can help your Katie and offer you some peace of mind!
    Here's hoping something can come to light!

  6. What a challenge and now the long wait for - hopefully - some answers. That little fellow is gorgeous as always and I love your flower pictures.

  7. It would indeed be good to know why Katie is like she is rather than just shrugging your shoulders and saying something like "These things happen" or even worse "God moves in mysterious ways".

  8. How did I miss this new blog address and all these posts? I need to catch up and was struck by the genetic testing. We have never done that for Sophie, either -- not since she was very young. I go back and forth -- curious to know what went wrong but annoyed that there'll be no treatments, just "knowledge."