I’m sure at some point in your life you have uttered the phrase, “No one understands what I’m going through!” Trust me, if anyone can relate to that phrase, it is me. I may not be able to relate to why you said it, but that phrase is pretty much my daily life after becoming a mom to twins with disabilities. If you’re new to my blog, my son is autistic and my daughter has a rare genetic disorder that leaves her severely developmentally delayed. Spoiler alert: This blog is not meant to gain sympathy for me, it is actually meant to uplift you with whatever you’re dealing with. Keep reading if you need some encouragement.
Having Newborns In Two Different Places
I first used that phrase, “No one understands my life” the day I gave birth, which is quite frankly a bit disheartening. I had given birth to twins, but never had the opportunity to hold them. They were rushed to the NICU while I was wheeled to a dark, cold recovery room after my c-section. About 3 hours later, the nurses wheeled me through the NICU and pointed out my babies to me as if I was at a museum. “Melanie, there’s Genell” … the nurse taking care of her held her up to “show me my baby” and that was it. No touch. I quickly thought, where is Julius, but he was next for me to see. He was on the other side of the room with tubes down his throat because he was having trouble breathing on his own. I really only got to see the top of his head because I was on a stretcher and couldn’t move about much. That experience was my introduction to parenthood. A very emotionless, showcase kind of experience. Six days later, I was still recovering in the hospital. I wanted to take a trip to the NICU but had to wait for a nurse to bring me down because I did not have anyone there with me. As I got to the NICU, the nurses said, you came down just in time. I had no clue what they were referring to until I saw a transport team packing Genell up to send her to another hospital. Genell had Necrotizing Enterocolitis (NEC) which is a severe intestinal disease and the hospital where she was born did not have the adequate team to care for her. I literally had less than 3 minutes to process it all. Within the first week of me becoming a new mom, I never got to bond with them, one of my twins was taken away from me and sent to another hospital an hour away all the while trying to balance having the other twin at home, and recover from a c-section all at the same time. “No one understands my life”.
My Daughters Voice Is A Computer
I hit the fast forward button to get to this next point. Genell, my sweet baby girl who has the rare genetic disorder is also nonverbal. I’ve never had the privilege to tell people about her first words. No “mommy”, “baba”, “more”…nothing. Genell is definitely not mute because she babbles, but that’s as close to talking that I’ve experienced with her. Luckily with technology, and the help from Speech Therapy, she can communicate with an eye gaze device. It basically looks like a tablet with large icons. Each icon represents an action or need. When Genell focuses her eye on the icon, the device will speak the word. This is my version of hearing my daughters voice. It’s all I know and I am still thankful that she is functional enough to operate the device with the movement of her eyes. But yet, with all that said, “No one understands the life I live”.
The Newborn Years Never Ended
Most people think about the newborn year as just that..a year. Actually less than a year because once they’ve passed the 6-month mark, the term newborn pretty much goes out the window. Some things that do not fly out the window are those cuddles, bottle feedings, diaper changes and tracking milestones. At the time of me writing this, my twins are 9, however, the moments/tasks that I mentioned still exist. In addition to Genell being nonverbal, she also has never crawled or walked, is incontinent meaning she wears diapers, her milestones are still tracked but this time it’s not your “standard” 12-month milestone list. Her milestones are tracked by her specialists, therapists, and case workers to see if there is any improvement. I didn’t mention the sleepless nights that sometimes happen with newborns and toddlers, but yep…those exists for me too. Just like a newborn, Genell cries when she needs something, but it’s with 9-year old lungs. “No one understands the life I live”.
I only mentioned a few things that make me feel like no one understands the life I live, but trust me, the list is a lot longer. I didn’t even even touch on how my life has impacted my career, my family, and my mental and physical health. I will save that for another time. But I am pretty sure, after reading the few things mentioned you either:
1) Are going through something and realize it is not as bad as you think in comparison to my 24/7/365 isolated life.
2) You can relate to one or all of what I mentioned, and have realized you are not alone!
3) You are at a rough part in your life and don’t know how to get through it and are curious on how I’ve made it this far with the cards I’ve been dealt.
How I Cope With Everything
Although some of the things I’ve mentioned may seem unimaginable, it is my life. The one thing that helped me was Acceptance. But whew, let me tell you it was not and still is not easy to do. I have my moments when I cry, when I don’t want to talk to anyone, and when I just question why me?! But I have people and things in place that help me which include my therapist and prayer. My self-help guide is also a biggie, because sometimes I go through the day feeling like a zombie and I have to refer back to it to get unstuck. My life is definitely not easy, but I do the best I can. Here is a link to my free guide with 5 tips that help me get through the day, week, month, and even year! If you got something from this, let me know in the comments because I’d love to virtually meet you!