It’s been a minute ...

July 19, 2018

 


It has been quite some time since I’ve written.
I found myself needing a serious break from being the "down syndrome advocate" to just being her mom. It felt like since the minute we were given her diagnosis I have been working on everything to get her the services she needs and the therapy we need to grow in this new life. I didn't realize it until I finally took a break and thought to myself how badly I needed to live in this moment more and just focus on our day to day life together. I am still not entirely who I hope to be for her, I don't know that I will ever feel completely satisfied with my daily routine and feel like it is ever enough. I never knew that motherhood could also be filled with so much guilt and equally as much love and joy. There have been days that I feel utterly unproductive because I didn't call her service coordinator for an update on why she hasn't started her physical therapy. I have been very overwhelmed with the ins and outs of everything I am fighting to get for her, and I know when she is older that it will only become more difficult in regards to school and other aspects of her growing life. I know that these trials are training, and preparing me to be a more experienced fighter for her. As of right now we are still waiting to get her physical therapy, and occupational therapy started, and she also was just re-assigned an infant stimulation teacher. I met with her last week and it went really well, I am pleased that I like her and I believe the transition will go smoothly. I expressed to her my frustration with how long everything is taking and she informed me it was most likely due to the fact that we moved and her case was reassigned. I guess something got missed during the transition. I can't even count the amount of phone calls I have had to try and get this set up on my own but in a world where she is entitled to these services, the people who are supposed to help sure make it difficult. Her new teacher put in a request for a new PT, and OT consult and we are now trying to set it up so that they come into the home with her since trying to go somewhere is near impossible. During this break from writing many new experiences have happened some good, some bad, some confusing. I want to touch on constipation... i know of all things why talk about poop? I never realized how much waiting for your baby to poop could stress you out. Amor started to experience her first rounds of constipation and she went about 6 days until I asked for some advice from other moms on the best way to help her. Lets just say the process was horrible and my baby was in a ton of pain once she was able to push anything out. Since that day it is a constant issue on my mind... we have added juice, and probiotics but ultimately changing her formula has helped tremendously. We missed a week of EIP in Laguna because she was so uncomfortable with her tummy issues. When we did come back she made it to one class day and then she caught her first cold. I was so afraid and instantly wanted to take her to the hospital (first time mom problems) but we rode it out and she recovered after a couple days. In happier news, she is sitting up by herself...I would say she is about 85% independent with sitting up. We are still working on how she will catch herself if she loses her balance and I definitely can't leave her alone because she throws herself back at times, but we are almost there!!! I find myself still struggling to not compare her to other kids that are her age or younger that are fully independent with sitting up. I see other kids getting their first teeth that are younger than her and I do compare at times but I am working each day to remind myself that she will reach the milestones at her own pace. She has also started to babble more and has said mama-mama-lalala and many other things that are becoming more defined! I don't think she is saying mama-mama when she sees me but it is something I say to her millions of times per day so we will see how soon she makes the connection!





 

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