Thursday, April 23, 2020

Mother’s Day from Hallmark

Well there’s no possible way to stop my tears watching this. Thank you Hallmark for including Down syndrome in your narrative.

Dear Mom

Monday, April 20, 2020

Ohio Quarantine Week 5

Last week was rough.

Monday I had a dip into depression. It wasn’t full blown, but enough to throw me off. It sucked. I heard from a lot of other friends that they were in a deep funk Monday too. I wonder if since Easter was so isolated and not as social, it threw everyone off? 

Tuesday Ailo was zooming around the yard and we think he strained something. He yelped in the driveway and Wed was whimpering and limping a bit. Tim took him to the vet which made us anxious. But the vet team was covered in protective gear and Tim wore a mask. No one was in the store (Banfield is inside PetSmart) while they examined Ailo. They found nothing and sent him home with anti-inflammatory meds for two weeks. 

Wednesday I had an all-office lunch Zoom catch-up. Towards the end of the call, I put on my big girl pants and knew I was going to get vulnerable. (Twenty people on a Zoom call) I thanked everyone for giving the parents patience. I said "This has been really really hard." and my voice cracked. Ugh. Then my eyes started welling up and I said "We parents really just need some grace and empathy. We cannot work 8 straight hours a day, we are breaking up our days from 7am to 11pm." Everyone was very kind. One of my friends started tearing up, another had to turn away from her camera b.c she started crying. Every Mom messaged me after that call and thanked me for having the courage to speak up. I'm so glad I did, even if it meant exposing emotions - which is sadly rare in my office. 

I had a 4:15pm call with Hannah’s OT and teacher, Ms. Booth. As soon as Ms Booth gets on these calls, Hannah freaks out and runs away. I do not understand it. Hannah refused to come back to the laptop. I had to talk through her skills with her OT. When I got off the call at 4:30, I thought it was quiet and Nora came over to me to tell me Hannah had fallen asleep on the couch - this never happens. It's literally the 2nd time in Hannah's entire life she's randomly fallen asleep anywhere. 



The rest of the week went better. We had a Zoom “date” with good friends in Denver Friday night. Saturday and Sunday were quiet. Still chilly here and wasn’t terribly sunny. 

I had a pretty successful Kroger pickup Saturday AM - got a lot of produce and maybe 90% of what we asked for. 

Hopefully this week is a little less emotional!

Sunday, April 12, 2020

Ohio Quarantine Week 4

Week 4 of the global pandemic quarantine happens to be our spring break. We had nothing planned for spring break - per usual. The girls were actually going to be at Extended Care Mom-Thu anyway. Tim and I were supposed to be off work Fri and Monday. “Vacation” days - ha! We are now splitting the days  - that way each of us has a full day to focus only on work. 

This week’s wrench: tornadoes! 

Wednesday night I had gone to bed before 10pm - my usual - and by 10:35pm Tim was in the bedroom giving me a warning that there was a huge line up and down our area for a tornado warning. The city sirens were going off. 

We sat downstairs for about 10 minutes watching the local weather when the winds outside picked up and sirens came on again. I immediately rushed upstairs and scooped Hannah out of her slumber, Tim got Nora. We went down to our cold unfinished basement and sat for 15 minutes. 

We came back up around 11pm, Hannah went immediately back to sleep. Nora, not so much. I had a hard time falling back asleep - awake until midnight which is BAD. Thursday I was a grumpy mess. 

Our weekend was good; sunny Saturday with grass mowing, walks, and video catch-ups with friends which is normal now. 


Oh yeah! Nora finally lost a top tooth last Saturday morning!


Our dumb dryer power button broke AGAIN - twice in seven years now. Poor design on GE’s end because you have to replace the entire control panel. I was proud of myself for remembering this from the first time it happened. I ordered the new control panel, swapped out the circuit board and put it all back together. For someone who is admittedly not handy, I’m pretty proud of myself. 



I miraculously got Easter goodies before the pandemic swept in, so I was ready! I think Nora loves Easter more than Christmas! Awake at 5:30am and I slept in her bed with her - she knew to stay in there until 7am. Goofball. 

Quiet lazy Easter here, with some additional bacon and a chicken and mashed potato dinner 😆

Monday, April 6, 2020

Ohio Quarantine Week 3

Our moods are getting better - I know the weather helps. Everything around us is blooming and green - thank goodness. 

This past weekend we were actually incredibly busy - with home work. Tim changed some lightbulbs, installed a new light switch in Hannah’s room, then we tackled trimming about 9 honeysuckle bushes along our property that borders the road. Anyone who has honeysuckle on their property knows how aggressive that plant is. We took turns for about 6 hours. It was nearly 80 degrees that day - not typical for March in Ohio. 

Then we grilled out and sat our butts down. 

Sunday I did a 3 mile run, then I took Nora with me to my office – I need my office chair for my back! PLUS our office managers were gracious enough to offer up supplies - TOILET PAPER. With three girls in one house, we go through it quickly 😕We had tons at the office so I took 6 rolls, one roll of paper towels and some tissues. Our snot and colds here have not completely subsided, so we are still in need of tissues! 

I’m glad I could leave the house and take Nora with me - I think she needed it. Nora also had expressed wanting a family photo with very specific art direction; she would hold Hannah and Mom & Dad would stand behind them. Tim held the phone out as long as his arm would allow, and wouldn’t you know it – it came out amazing : ) 



We did buy Nora a Lego set to keep her occupied - she finished in about three hours! She has been super unmotivated... I can’t blame her, our girls had such a routine that has been thrown out the window. 


Friday, April 3, 2020

Extra Fear + Hurdles

As a family with a child who has “special” needs, this pandemic holds a lot more hurdles and fears for us. 

First, while Hannah technically does not have an immunocompromised diagnosis, she tends to catch viruses much easier and they last a lot longer. As soon as our schools closed, I put our family on lockdown. We ONLY go out for food and TP - if we can even find it. My daughter has been in the hospital enough over the past (near) six years, I refuse to even give this virus a chance. 

Folded into that point, did you know the ethical and social equality issues that lie in WHO gets life-saving treatment? “The plans struggle to address a range of ethical issues, and also matters of social equality. People with underlying medical problems may get ranked lower, yet low-income people and people of color often have more health problems because they cannot afford top-notch care.”


Washington, Alabama, and Louisiana all have guidelines that may exclude patients with dementia, AIDS, underlying health issues, or people with severe cognitive delays. It’s terrifying that someone with Down syndrome has the potential to be denied life-saving services because they aren’t deemed worth saving. I am thankful Trump has stepped in and said disability should not be a reason to deny virus care. 


Finally, while ALL kids have been thrown in the deep end and parents left to fill in teaching roles, a lot of students on IEPs now lack their weekly interventions; occupational therapy, speech therapy and physical therapy. I am grateful our preschool has scrambled to get teletherapy in order; we now have weekly video chats with Hannah’s therapists. We bought a printer and have supplies and tools to help Hannah keep her tasks up to date. However, we still have to carve out the time because Tim and I both STILL HAVE TO WORK - THANKFULLY. Grateful beyond belief for our jobs. 


So many of us parents feel stretched thin. Especially those with kids who had extra support. Be gentle with us.