“How am I going to get through this?”
“Am I going to be able to do this?”
“Am I strong enough for this?”
I know it’s not like I have a choice. This is happening. Shane Young Jae Kim is 19 days old today. My sweet baby was born on November 4, 2014 and has been in the NICU since November 5, the day after he was born.
He was transferred to the NICU due to hypoglycemia. He had a glucose level of 26 when they took him over. I told every healthcare professional that came into my room his symptoms, but they were not abnormally uncommon for newborns to show so they did not worry about them. He shook sporadically, but babies get cold quickly and the room was pretty cold. He did not take to latching or breastfeeding, but some babies take a few days to figure that out. He did not move too much or cry, but some babies are naturally just quieter and are not as fidgety. It took about a full day for the staff pediatrician to come in and ask for a glucose test, which showed an extremely low level. After one day, his levels went back up to normal, which we were so excited about. The doctors then did their assessments to figure out why our baby boy showed low muscle tone, poor sucking reflexes, and not very much eating habits. After ruling out the results from the MRI, EEG, and other such muscle enzymes labs, they began testing him for genetic/chromosomal issues. Ultimately, we were given the diagnosis of Prader-Willi Syndrome. We spoke to a geneticist and found out that this is a rare deletion in the baby’s chromosome 15. “Out of all the issues that could have happened to our baby, we were handed a random genetic deletion in our baby’s DNA,” we thought. “How could this have happened? Of all things, who could have ever thought that this could have happened to us?” We were so baffled. I was merely feeling so blessed that our baby boy had pulled through from his primary hypoglycemic episode. He is medically healthy. The only issue he has is his poor sucking reflex and his inability to eat as much as an average 19 year old baby is supposed to eat. The nurses are wonderful people who have been working with him in working out his facial muscles so he can suck better which eventually makes him eat more. I am spending Monday evening at the hospital so I can spend the night with him and get used to feeding him and taking care of him. Rumor has it that we are able to take him home on Tuesday! He will be coming home with an NG tube and medical equipment company states that we will be coming home with a kangaroo pump as well.
He has rounds of meetings with specialists; neurologist, geneticist, urologist, special education teachers, speech therapist, PT/OT, nutritionist, and endocrinologist. Will I be able to do this? Will I be able to keep up? Will I be able to keep my patience? I love him so much, but will I be able to keep my cool with him? Will I be the mother he needs me to be? I have such doubts in myself. I always thought we would have a child then I would be able to go back to work in a few months and just hire a babysitter, but the more I think about the situation and my family, the more I realize I don’t want to. I don’t want to leave my child’s side. I want to make sure he has everything he needs. I think this is what every mother goes through and it makes me respect working mothers that much more. Never in a million years did I think I would be a mother to a special needs child, but now that I am, I am freaking out a little bit. Along with this baby, we have a one-year-old golden/lab puppy at home who gets a bit destructive when he gets bored or feels neglected. We also have a one-year-old tuxedo kitten who we rescued from a bush since he was a few weeks old. He gets extremely needy when he feels neglected.
Between the energetic pup, the needy kitten, and the special needs baby, my life has flipped completely upside down. Shane isn’t even home yet and I’m already having mini panic attacks. My husband works around 11 hours a day. He is hardly home all day and when he does get home, he has practices with his CounterStrike team online. I’m trying to organize myself into a schedule for doing the laundry, dishes, making breakfast/lunch/dinner, pumping, feeding, Swiffer-ing, vacuuming, walking the dog, feeding the cat, and a little me-time. Will I even have any me-time? Being a workaholic, what will I do? Being a workaholic, I felt independent and relatively proud that I could be self-sustaining, but how will I measure my self-worth now? I can’t bring in any money if I don’t work. How am I supposed to contribute to this family without working? Will I be a stay-at-home mother forever? Will I ever go back to school? Is a SAHM all I will ever amount to? I need to rethink who I am and who I am going to become. I am so worried that I am going to be so overwhelmed. The parents and in-laws say they’re here for us, but there’s nothing really they can do. My friends also are here for us, but there’s also nothing they can do. I don’t know how anyone can help. Everyone has their own lives and it’s not like I can call upon them every second of every day for assistance. I know they are there, but this is something I feel like I just need to figure out.
Is it rude to ignore everyone for a few weeks until I get into a routine? I am going to be an over-obsessive mother and wife. I think I will embrace my obsessive dark side. I am always worried that I will fall into that spiral and never come back out and just become insanely obsessive about everything, but I think my husband will pull me back out if I get in too deep. I have been blowing up on people closest to me recently due to the stress and frustration. I feel smothered, even by the parents who are just offering a helping hands. All I want is some peace and quiet with my son to figure out what is going through my head and clear my thoughts. Instead, I receive phone calls and texts every few hours about how Shane is doing, if they can come over with food, if they can eat with us, how we are doing, and not to worry because “Shane is going to be okay”. I have gotten so annoyed with everyone who has told me that “Shane is going to be okay” or “I have a feeling that Shane is going to be totally normal”. He is not. He is not normal nor is he going to be. And that is totally okay. He is going to have learning disabilities and he is going to have some issues, but that is okay. I am just glad he is alive and healthy. He is not “okay” and there is not any amount of prayer or wishes that will change that. My husband’s entire church is praying for him, but I just wish that they would be praying for peace, patience, and strength to continue on the path that God has for us rather than “supernatural healing”. Shane is in this world just the way God made him, and we cannot be happier. We are a bit overwhelmed, but he is perfect. He is ours.
I am hoping this blog will help me vent and think things through before I say things I regret to the people who are here for us. Feel free to share this journey with me if you want to. We all need someone.