As a young girl, I swore I would never do certain things once I had kids. Guess again, I am "that mom" now.
Usually I play Pokemon in the park after dropping the kids at school, but I tired of that today. I decided to actually enjoy my time at the park. The smell of fresh cut grass, the remnants of cherry blooms, my favorite magnolias and a surprise visitor.
Oh my goodness. Trying to make plans for summer. Do I or don’t I?
It has taken me many years to be comfortable enough to take my children to public places, like restaurants. We have just started to take my twins to church again. Last Sunday was the first time in 3 years as my daughter was pretty much non-verbal at the time and would smash her head on the floor because she wanted something but could not make herself understood. This past Sunday, we took them to a new church; one that we had only been to 1x by ourselves, to see if it would be okay.
The children did wonderful and we stayed to have lunch with the only person we knew in this church. She works as an EA at my children’s school and my twins both love her. We met her family; spouse and children. Her children have autism and they are now grown men. It was the first time that I had met an adult with autism. I have hope.
So this summer. There are 9 weeks to fill with something. I am hoping to space out the outings or events if I can. So I have been thinking that I would try to put them in a day camp. I was supposed to attend a Parent info night about inclusion and accessiblity related to attending these camps, but it was cancelled. The phone message said that someone was supposed to call me today. At 3:30, I called the City of Surrey myself. I was put on the phone with Mr. MacDonald, who was SOO helpful. Last year when I called, I must have called the wrong department and didn’t really get much help. So this year , I think I understand it, the registration process. Surrey has the option of 1:1 support for my children at day camp. You need to send them to a full day camp (9 to 3), minimum, with a maximum of 2 weeks per kid. So you register for the support for the week that you want to send them and then you sign up for the camp. Hopefully, the server doesn’t crash. Hopefully my kids don’t protest going when or if I do get them registered.
I’m pretty sure that I know what type of camp I will send my kids to (anything ART related for the girl). When I asked them, the kids were too distracted (normal) to answer my question. So we will see.
The City actually responded quickly and I had a call the following week. I was told that while it was highly unusual, they would put a “no parking” sign in the location that I suggested for consistency’s sake.
2 days later, there was the sign. Can’t miss it.
So the jackass parked further up past the houses on the curve of the road instead. I don’t think that some people realize about the rules of parking in cul de sacs. (yes, I called and they got a ticket.)
As mentioned in the bio, I do geneology for fun. I have always been interested in my family history as I am a first generation Canadian in my family; my parents having come from Ukraine and Poland during World War 2. So I picked it up again while I was pregnant with my twins. It was summer and I was too big and too hot to move but I still wanted to be productive. So I decided to take a crack at my family and see what I could learn, plus I had married into a large family and still couldn’t sort them all out. (Hubby is is the 2nd of 40 1st cousins, so family reunions are interesting.)
My geneology quest took me to local cemeteries and from there, I wander all over, photographing stones and posting them on various sites like Findagrave, Billiongraves, CanGenWeb (Cemetery project), Canadian Headstones, and now I have gone back to Wikitree and categorize cemetery listings when I can. There are different types of researchers. Some just take the photos and post them. Others, like me, like to do the research on who they are. I am obsessed with connecting the families, and so I virtually wander the continent. For the past 2 days, I have been sorting out a cemetery listing for Mountain View Cemetery on Findagrave.
Mountain View is the only cemetery in Vancouver, British Columbia and encompasses about 10 blocks; starting at 31st avenue and going to 43rd. There are 11 sections of the cemetery.
From their website
Vancouver’s only cemetery is located west of Fraser St, between 31st Ave and 43rd Ave. Owned and operated by the City of Vancouver since 1886, Mountain View is made up of 106 acres of land with approximately 92,000 grave sites and 145,000 interred remains.
So I have been sorting out the Buss family who are buried in Horne1 closest to the road near the intersection of 33rd and Fraser. Sometimes you have stones with names that you can’t find records for in vitals. BC is lucky to have online archive database through the Royal BC Museum (royalbcmuseum.bc.ca). Rules for privacy are that no data newer than 20 years is available. So I was trying to figure out why I had no records on G. Weiss who died on November 2, 1902, according to the stone. I decided to do a reverse look up, and searched for people who died on that date and found a “Godlove Wise”. Sadly, there is no link for this record to view the death certificate. But you can sometimes find transcriptions through record searches on FamilySearch.org. FamilySearch is run by the LDS Church who are very focused on documentation of ancestry.
Weiss is German, and is pronouced “Wise”. The name literal is a literal translation from German to English, so the name is supposed to written Gottliebe (with an ‘e’ for female) Weiss. The only way I know it was female was a record on FamilySearch for a newspaper record, that simply says
“Weiss- At Vancouver, on Nov. 2nd, Mrs. G. Weiss.”
I live in a cul de sac that has “No Parking” signs on the right hand side of the road. I live at the bottom of the cul de sac. On the light post in the pic, there is a No Parking sign that indicates not on the right side. Lately, my neighbors and I have became regular users of the city’s bylaw parking enforcement line. We call to report cars that are parked in circled area, thus blocking us. Yes we could pass through but at times, the clearance is like a fingernail’s width on either side, so I would rather not. We have had missed garbage pick up, etc because of jackasses who are either ignorant or lazy. What’s worse is that sometimes it is the neighbor that lives there who does this. Their driveway is full of cars, so rather than parking further up the road where it widens (although it is still illegal/ticketable offence), they park in the circled area. 
So today, I decided that I should call & email the city and ask if there they would put a sign there… where the rejected exercise bike is located.. so that it is clear and OBVIOUS that one should not park there, thus incuring the wrath of at least the 4 of us who get stuck at that end.
We will see if anything comes of this request.
#parkingwars
Yesterday, I went to coffee with a new group of moms. It was an effort for me to go, but I knew that I needed to get out and meet other people rather than stay home in my comfy bubble doing geneology and facebook land. This group was new to me from facebook, specifically for cargivers to get out. What I found is that it is mostly other ASD moms like me. I am so glad that I went. So in going, I had to introduce myself to this group, which reminded me of the “journey”.
So back to my “heart warriors”. We went back to the cardiologist for a 6 week followup post surgery for my daughter, and the doctor said, well, since he is here, let’s have a listen to [my son]. When they were done of appointment/tests (which consists of an echocardiogram, ECG and then review with doctor), the doctors were stunned. My son’s numbers were worse than my daughter’s had been at the time of her surgery. They needed to keep him in and do surgery on him first thing in the morning.
I remember sitting in some “quiet room” bawling my eyes out. Luckily, my son only needed an angioplasty and was discharged right from the ICU in less than a week. And he has never needed surgery since.
So we moved from a 3 story, 3 bedroom townhouse to a large house in another town. It wasn’t until my daughter was 3 that we finally decided something might be going on. She was non-verbal and had outbursts where she would smash her head on the floors, walls, etc. I was stressed as it was about having twins. These being my first and only children. I was/do living on the opposite coast from my family and had never been around my nieces while they were growing up, so I had no context for “normal”. In the end, we got our daughter assessed and diagnosed for autism when she was 4 years old. The diagnosis came on the first day of school, so I didn’t send her to pre-school with her brother. We got him diagnosed 7 months later. Because the waitlist had seemed so long, we got him assessed privately and then began the task of getting a home ABA therapy team. We already had a home team for our daughter and so it was easy to just add him to the schedule. But it was like a whole new world, new terminology, new everything to learn.
My once non-verbal daughter is now a chatterbox and very artsy. Her brother is more focused on Roblox at the moment, plants vs. zombies, and of course, his first love, Thomas & Friends.
Yesterday we took the twins to the cardiologist for their regular followup. Both kids are doing well and daughter doesn’t need surgery yet. Yippee!
We took both babies home from the hospital near the end of October. My mother came to help for the entire month of November. I took a photo of her holding both babies at the beginning of her stay, and planned to take another at the end of her stay. The second photo didn’t happen because when we went to the Cardiologist for a follow-up appointment for my daughter, the team said, oh well since he is here, let’s do an echocardiogram on him too. In the end, they said, Holy! how is he just sitting there?!! He doesn’t look sick, but in fact, my happy, smiling boy was harboring a pressure reading that was worse/higher than my daughter’s at her surgery. He had to stay overnight for immediate surgery in the morning.
I remember sitting in a conference room and just sobbing. I mean the stress of having a baby is one thing. The stress of having twins more so. We got through her surgery all the while being terrified that they would tell us that she died. (After all, she was a preemie, with a life threatening condition.) Now I was told that the other twin needed a procedure… so both my babies could die. I broke.
So on the last day that my mother was to be with us, my son had an angioplasty and was in the hospital only 2 days, I think, before he could come home. While my son’s “numbers” aren’t ideal, the cardiologist is happy with them and he hasn’t needed to followup procedures and actually this Monday will be his first followup Echo in 2 years. (whereas my daughter has them annually.) My daughter had to have a followup procedure to fix the fact that her valve was permanently blown open and ended up having an open heart procedure at 8 months old. We had our twins dedicated at a church service on Mother’s Day, and then 2 days later, she had an open heart surgery called a ROSS procedure. We were originally told that she would need a replacement surgery at every growth spurt and then we were told months later, that research has advanced so much that instead of the predicted 4 procedures, she would likely only need 2 more before a permanent solution as an adult. AND they didn’t have to open her up in future procedures as they would be done through the femoral vein.
My little heart warriors are now 7 and in grade 2. L has always climbed EVERYthing. She climbed in and out of her crib sooner than we would have liked. We found the monkey on top of things. She has surprising upper body strength that one wouldn’t think her tiny frame possesses. (Believe me, when she has a meltdown, you curse that strength and pray you can match her.) M has never really needed to worry about his heart. His sister accepts her heart appointments with ease and has never really given us stress about going to the appointments. “The doctor is going to fix my heart.” is what she says when we go, and she “helps” the techs to do the echos by guiding the “camera” to the areas needed. M is not so experienced so going on Monday might freak him out a bit. We’ll see.
I used to work at Providence Health Care in a full-time float position. So part of my first year or so was spent commuting on the inter-hospital shuttle. This shuttle goes from various hospitals and is for staff use only. Priority goes to those who are working, not just commuting to start/end shift. So on Tuesdays and Fridays, I used to go to St. Paul’s, but not go to my office. Instead, I would wait on Comox Street entrance for the shuttle to come. It would take me across the bridge to Vancouver General, then to GF Strong, then to Children’s. I would get out here and cut through the hospital to go to Brock Farhni Pavillion which is a care facility for Veterans.
So the day that my husband left St. Paul’s in an ambulance with my daughter, he had to take the shuttle with the nurse to get back to me at SPH. He came back with this story. He and the nurse were waiting for the shuttle and when she explained to the driver the situation about this isn’t a staff member but is a dad who had to leave his baby here for tomorrow’s surgery, the driver said, “come here Dad. Get in the front. We’ll get you back.” (of course my 6’7″ husband would need the front of any vehicle) So he comes back and tells me this story, and I said “This sounds like Doug.” Hubby didn’t remember his name, but the description I gave sounded right. Doug was one of the many (4 or 5) drivers that I shared my time with. He had an exuberance and cheer that I loved. I was actually surprised when we started swapping recipes. (yes I was prejudiced and didn’t think that men cook, nor remember recipes off the top of their head.) My favorite was his recipe for “Death by Chocolate” trifle.
So after my baby girl had gone through her surgery and we had been at the hospital for a day or so, I remember saying to hubby, “well, it’s almost 3, didn’t he tell you that he usually does the 3 o’clock run? Let’s go tell him that she’s ok.”
So we stood at the main entrance of the hospital and waited. The shuttle area was actually across the way but I either didn’t feel like going over there (post C-section), or thought that was I wasn’t planning to ride, that I didn’t think it was appropriate to go there. So we stood and waited. As the shuttle came around the bend, it slowed and didn’t even make it to us, before I saw him almost stop. He looked at me, and pointed. “You?”
I pointed at myself. “yes, me. My baby.”
He stopped the van near the entrance, probably confusing the staff waiting for him to pick them up, and got out. “Is it really you?” ( I hadn’t worked at BFP for about 8 or 5 years at that point, so it had been a while since he saw me.) “Is it your baby?”
“Yes, Doug. It’s my baby. She’s had her surgery and she’s fine now.”
“Oh” He said, “this just made my weekend. I don’t even care if I get turkey.” (remember it was Thanksgiving weekend.) “You know, I saw Dad here as I came around the corner, and I thought Aw, gee. and then I saw you and I was stunned. This is the best.”
“Well, I thought that you should now, given that you met him 2 days ago, and wouldn’t know how the story ended.”
A week or 2 later, he met my son upon his release from SPH, after one of our visits with his sister. It’s amazing how stories/lives collide.
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Hubby also told me that the nurse said that she had met me during her time as a patient and I actually remembered when I met her as well.
Lives collide.
So off I went to have babies at 5 a.m. on a Sunday morning. I went off to have a C-Section. I missed out on the “first photos” after birth as the twins were rushed off to the NICU shortly after dad cut the cord. I was sent to recovery, where I had one of my former nurses clean me up and look after me. That was weird. Being a patient in the hospital where you worked for 8 years is weird.
Twin A (L, the girl) was born at 5 lbs 1 oz, while Twin B, (M, the boy) was 6 lbs 1 oz. I called my friend early in the morning before she left for church and told her that she should think about coming down the block to visit us. She apparently ran into the choir room shouting “the babies are here! the babies are here!”, or so I was told by the choir director. No one needed to be told which babies she was referring to, and it was announced from the pulpit. (I was later told by one person that when he heard the weight, he hadn’t realized that they were preemies, because frankly those are good weights.. understandable, I was a house trying to move the last few weeks.)
We had a stay in the NICU of St. Paul’s because they were preemies. At the time, there were 2 other sets of twins born as well. During our stay, we had up to 5 sets in the NICU for a brief period. Alas, my twins had to split up shortly after being freed from the incubators because the doctor detected a heart murmur. And so it began, Twin A was sent with dad to Children’s hospital for an echo, while Twin B (the boy) remained with me at St. Paul’s. They were gone all day. He phoned me to tell me that she wasn’t allowed to come back because her echo wasn’t good. They needed to do surgery. In the end, she was diagnosed with Aortic Valve Stenosis. This was explained to me as the aorta has 3 valves that are supposed to open when the blood goes through, but her heart was only opening 2. So blood had to be pushed harder to get through. This can strain the muscles and make the heart work too hard.
In the end, we spent a nerve-wracking day, October 7, 13 days after they were born, and 4 days before the original C-section was scheduled, waiting to hear if our daughter was ok. She had an angioplasty, which is essentially the “balloon thing” that blows a valve open. Unfortunately, she was so little, that it permanently blew her valve open and so blood flowed undeterred, meaning good blood and uncleaned blood mingled and this would have to be fixed later.
So we were introduced to the Cardiology department of BC Children’s Hospital and my little heart warriors began their journey with a crash course for us parents. I called my colleagues and told them to come wait with me. It is also strange to become a patient on the receiving end of the work that you once did but thank God for the people that I knew, that I could call on for support.
For the next 2 weeks, I went to St Paul’s in Vancouver for the day with Twin B, learning how to feed him, hold him, scared I would drop him; and then late afternoon, I would go to Children’s PICU to see my daughter. By then it was a long day for all of us, and there were some not so nice comments from a couple of nurses. I complained about one as she basically said that I was never there, and they wouldn’t release her until they knew that I was a fit parent to take her home. I did NOT need that, thank you very much. Not only was I stressed about becoming a mom, I was also dealing with 2 babies, — 2 babies in separate hospitals — one having just gone through a life-threatening/life-saving procedure. Learning a new hospital system and a new world (maternity wards, milk banks, breast pumps) was also stressful. It was actually 3 days post-surgery that I timidly asked if I could hold my daughter. She was hooked up to cords and tubes that I was scared it would interfere with her healing. The nurse looked at me with shock and surprise that I had yet to hold her since her surgery. Sat me down in the rocking chair next to her bed and placed her in my arms. It was all I could do not to cry as she was so small.
Twin B was released from the hospital on October 19th and we took him to see his sister. I was told that putting them in the bed together was encouraged as supposedly sensing the healthy one would help the recovery of the sick one.
After she was released from the PICU and sent to the ward, I put them in the bed together. I remember a nurse coming in to take blood and she literally did a double take. “There’s 2!?”
“Yes.” I said.
“Well, which one is the patient?”
“Um… the one with the tubes coming out of her.” I said, awkward smile.
That ASD Mom 