I get asked a surprising number of times if I wish my daughters weren’t on the spectrum, is it hard having 2 kids with special needs or was hearing that diagnosis as hard as people imagine it would be?
You know how people say “Let me make a long story short?” This isn’t one of those times because every detail is why I will always have the same unregrettable answer to those questions.
I often tell people Tess saved me and there is more truth than hyperbole to that.
After giving birth to our oldest daughter I had a really tough recovery period. I wasn’t healing very well, struggled with blood clots and was going through a tough time emotionally. I was working full time, going to school for my Psychology degree (man am I beyond glad I finished that) and trying to raise a newborn with complicated in-law issues. When the proverbial sh*t hit the fan all I could think was “Well it must be a Tuesday”.
I had gone to work feeling worse than what even my new normal had come to be with really sharp pains in my abdomen. I was so frustrated with all the complications post c-section I didn’t bother calling my doctor; I was just tired of having her on redial.
I took a break from work to head class and while I was sitting there doing a poor job of pretending to listen to my prof the pain kept getting worse until I felt a sudden warm gush. I must’ve gone into shock mode as I stayed seated until class was over. When I finally stood up I saw a blood pool on my chair and knew I couldn’t ignore this any longer.
Fortunately my husband was also working on a degree at the same university and happened to be in class across campus so I headed over and when he got out asked him to take me to my OB. Unfortunately my beloved doctor wasn’t in so I had to see one of her partners; an old school guy who needed serious work on his bedside manner.
Due to my heart problem (I have Wolff-Parkinson White Syndrome) and history of clots they decided to do an ultrasound because he thought some of the clots had probably just busted and passed. After we finished with the ultrasound tech we waited in the examine room for him to return with the results.
He walks in and tells me I’m on the verge of a miscarriage. I didn’t even know I was pregnant! I hadn’t stopped losing blood since my c-section only a few months prior (TMI I know) and wasn’t experiencing any of the symptoms I had before with Rose. In that continued “I don’t really care” manner he tells me 3 out of 4 women who come in with my symptoms will miscarry within a week and the fourth would miscarry by the end of the day so he was going to schedule me for a follow-up with my regular OB to see if I would need further medical care’. I was told to go home, rest until the major bleeding and pain stopped or head to the ER if it worsened.
We left and didn’t really talk about this for a week. We didn’t tell ANYONE! At my next appointment I was still pregnant and my OB told me due to my previous issues my chance of miscarriage was still high so she wanted me to come in every week for follow-ups which I did.
Three months later I was still pregnant and we still hadn’t told anyone or really talked about it because we kept expecting the miscarriage. It was like if we didn’t talk about it then my pregnancy wasn’t real so when I miscarried it wouldn’t hurt as much. Things began to get bad enough my OB talked to us about considering an abortion. She said we were going to have to make the decision soon because under Texas law we didn’t have much time left.
I had been pro-choice for a while but after having my other daughter it just felt harder to rely on the idea that whatever was there wasn’t really a baby so it didn’t matter. I know other people will read that and think I’m wrong – I’m not here to convert you I’m just being honest about MY struggles.
We ended up deciding by not deciding. We procrastinated so long legally it was no longer an option. I knew there was a chance we were rolling the dice with my life but I just couldn’t make that choice – or maybe I did.
Finally around the 5 month mark give or take we told people. We kind of had to because I was really not doing well and we needed the support. My heart continued to worsen and the pregnancy wasn’t progressing well. My OB had to guess how far along I was as the baby wasn’t growing properly and because of my previous complications we had no real idea of when I got pregnant. She just used my first appt with her partner as a baseline. Seven months after that first appointment you’d have no idea I was pregnant. I had lost weight during this pregnancy instead of gaining anything.
Tess had to be delivered via c-section roughly around 32 weeks from the day we found out I was pregnant. My heart had started to fail more and she wasn’t doing well either. My OB was concerned if she didn’t deliver neither of us would make it. That nearly came true as my heart stopped after Tess was born. I remember hearing everyone express concern over her then it just goes black.
My next memory, thanks to my wonderful doctor I was able to have one, someone had put Tess on my chest for skin to skin contact. I woke up to her heart beating against mine.
She was barely above 5 pounds and her digestive system wasn’t fully developed when she left the hospital but she was one hell of a fighter. We nearly lost her more times than I care to think about that first year and the only reason we didn’t is because my mom retired from professional nursing to become Tessa’s personal 24hr medical provider.
When she was diagnosed with Autism at age 3 it didn’t even phase me because I was alive and so was she. Trust me there are worse things than an autism diagnosis.
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