Distance learning

Owen has grown his love for drawing during this period and one day he decided to draw Covid. When I asked him how he came up with the image, he said it’s the image from the signs that are posted around town.

Everything and everyone’s life have been altered in some way due to Covid. Our last “normal” day was on March 12, 2020. I remembered it so well because that was the day when I took my dad to the airport and that was the last day when my kids went to school as they know it for their last 2020-2021 school year. Just like everyone else our routines have changed so much and so many times.

We have been here and we still are at the same place since almost a year ago.

I had just quit my job right before the start of this and I am not sure if it’s good timing or bad timing. It was good because I was able to devote all my time to the kids with distance learning; it was not so good because I did not have the time to pursue what I wanted career wise and therefore we did not have much financial stability as before. I am lucky that I am able to take time off to concentrate on the kids. It is a huge blessing and I am very thankful. But even so, I still want and will achieve the goal of what I want to do when I made the decision to quit.

I want to work in the field of accessibility where I can use my extensive knowledge from having 2 children with disabilities and incorporate into the world of technology. I have not pinpoint a specific title to the exact position but this is what I would like to do – being part of the accessibility design process, being an inclusion advocate, informing others of what technology is available that can help with their disabilities, and to be a parent advocate especially for the hearing and vision impaired.

I know there are many people that have been doing the work to support the disability community and it is only in recent years that I noticed the changes are really happening. Bigger companies (i.e. Google, Apple) seem to make more effort to include accessibility design as part of their standard design and they are more outspoken with their support. It is so great to see these changes along the side of inclusion for all. There are so much more to do and we can always do better. I want to be part of it. I have been an advocate for my kids since they were born. I have learned so much from their doctors, their specialist, and most of all from themselves. It is a great joy to watch your children grow and at the same time it is scary to imagine the world where I cannot always be there to protect them.

I have learned so much during distance learning with what my hearing impaired and vision impaired children need. I have learned how their tools are crucial to their daily learning. I have learned how technology can help their way of life based on their own disability. I have learned and I know that their tools need to evolve with technology constantly. I have the advantage to know it because I have 2 kids that show and teach me what helps them and what is hard for them. They are so used to going out of their way to accommodate themselves and I need to teach them to ask for help because things does not need to be hard for them, or not so much.

New ear: Part two.

Matilda had her second part of her surgery (this part usually happen 3 moths after the first surgery) where they take a skin graft from the area above her new ear and then placed it over her new ear after they lift her new ear up. They took some extra cartilage from her rib at her last surgery and stored it right underneath her skin for later use. It’s a pretty neat idea since they don’t have to cut her deep down again and the cartilage has a perfect little safe storage place.

I had asked the surgeons if they would be willing to give Matilda an ear pierce during her surgery since I am afraid to go anywhere with her new special ear! Matilda and I picked out her first earrings and had it all ready to go the morning of the surgery. In the picture you can see the mark where they will place her earring.

The surgeons took pictures of what they had done and it’s pretty great.

She did not have to stay overnight for this part of the surgery and just have to rest for about 2 weeks. With this surgery there are lots of wound care and frequent doctor’s visit to check on the wound. Matilda did great and was very happy with this one since she did not have to stay in the hospital.

Matilda wore these bands I got her daily when she went out to cover her wounds but after 2 weeks or so, she decided to not wear it and just show her cool rock start look.

Happy New (Y)Ear!

Matilda had the first part of her rib cartilage reconstructive surgery and she stayed in the hospital for 5 days after. The surgery went well after a good 12 hours and her surgeons were very happy with the result. Here are some pictures that the surgeons took of the ribs they took from her to build her a new ear.

You can tell what an amazing work the surgeons did and some skills! In the last two pictures you can see the 2 tubes that are below her ear that helped her drain the fluid. It was not comfortable at all and she did not like it when she noticed them.

Matilda woke up pretty happy and it was not until hours later when she realized she had all these tubes coming from her ear and her rib wound that she shut down and was feeling extremely sad.

She had a tough time when we were at the hospital once she saw all the tubing and how restricted she was with mobility. She refused to look at herself in the mirror and pretty much refused to talk or even eat. When the nurses asked her about her pain level she was always nodding that she is fine (I think it was just easy to do so than saying anything else). The doctor gave her goals and one of them was to make sure she moves her neck around especially the side she had surgery because kids tend to avoid it which then causes stiffness. Matilda did just that. She was afraid to move her new ear side. I had to constantly remind her of our goal which is to go home after 5 days and we do not want to stay longer, so after 2 days she finally got better of moving around but still with lots of prompting. Her mood was still very down and I was definitely feeling frustrated. I asked for a physical therapist to work with her and the doctor instructed the nurse to give her higher dose of pain medication versus the low dose she has been getting. Matilda was also very sleep deprived since every 2-3 hours a nurse would come in and check her vital and administer her medication (and when the medication is done it delivers a loud beeping sound that does not stop until a nurse comes back in). No one was getting any good sleep. On the third night, I requested that she needs at least 6 straight hours of no interruption and we worked it out so that she had her medicine as late as we could so she can sleep better.

Matilda had received gifts before the surgery so that she could open them while she was there but Matilda refused to open any of them nor did she want anyone to visit. She wanted to do everything when she gets home.

It was a long and tough 5 days but she did it. I think it was hard because it is completely not what she had expected. But she did it and she was so brave and she can’t wait for Christmas. Our second part surgery is in 4 months and she will not have to stay in the hospital and just rest for 2 weeks at home.

Happy New (Y)ear!