Sleep. What is sleep? I feel like I haven’t slept since Walter has been born. He’s always been a terrible sleeper. Waking up frequently. Screaming when waking up like he is pain. It can be exhausting, overwhelming, and frustrating. Along with the wakings, theres also the every three hour feeds. For those of you that do not know, Wally ended up back in the hospital a week after we got home for failure to thrive. He ended up undergoing surgery for a G-tube. We are now on a strict schedule of 4 oz every three hours during the day and 4 oz every four hours at night. We hardly ever make it to the four hours, so it ends up being every three hours at night too. My husband works third shift four days a week, and second shift one day a week. So four out of the seven days I do the night wakings and feedings by myself. It makes for some very long, sleepless nights. Most days I feel like my head is in a fog and I cannot think straight.
I’m a person who has always loved sleep and have always needed a lot of it. So going without sleep is hard for me. You would think after six months, my body would be used to it by now. But unfortunately that’s not the case. It’s like having a newborn for six months straight. It affects my health and it affects my relationships with my loved ones because I’m so tired, mentally, emotionally, and physically, that when I do have a free moment I just want to sleep.
On June 20th Wally has his six month check up and the dreaded shots 😩😩. We plan on discussing with our pediatrician the idea of a sleep study or may be being seen by a neurologist. Wally constantly twitches, moans, and cries in his sleep. He is always restless and just acts like he cannot sleep well. With Barth Syndrome the boys can have muscle pain and muscle fatigue. We wonder if he may be having muscle pain which causes him to not sleep well.
The nights can be hard and long. There are times where I end up in the bathroom on the floor just crying because I just want him to sleep so I can sleep. And than I cry because my heart hurts for him. I want to fix what’s causing him to not sleep and I can’t and it’s the worst feeling in the world. My poor husband… there are many nights he gets angry and sad texts with how much I am struggling. Luckily he works in town so he can stop in if he isn’t busy. For that I am grateful.
The other night was an exceptionally hard night. This is hard for me to admit so please be gentle. Wally just got over a double ear infection almost a week ago. Ever since his ear infections he has not been sleeping. And when I say not sleeping, I mean waking every hour screaming. (We had his ears rechecked. They are fine). Well this certain night, I was exhausted. I had nothing left to give. I tried everything to get him to sleep. Tylenol. Walking. Rocking him. Laying him in bed with me. He would fall asleep but than awake again screaming. Every time he would wake up screaming, I got more and more frustrated. Why oh why wouldn’t my child sleep? I remember the tears would start forming the minute I would hear the first scream. There was one waking that I had to go outside on our front step and just take some deep breaths. And than I let the tears fall as I set on our front step sobbing as my child cried inside. I would think to myself I can’t do this anymore. I can’t help him. He deserves better. And than I thought about my husband being able to get a break by going to work and than being able to sleep during the day without any interruptions. And I got mad. I was so mad. Mad that he got a break. Mad that he got to sleep. Mad that I couldn’t help my child. Mad at God for making me a carrier of Barth syndrome and passing it on to my boys. But after a couple of minutes of throwing myself a pity party, I stood up and went back inside, walked in to my sweet baby’s room, sat with him in the rocking chair, and sobbed. I remembered praying over and over to God for strength and patience. Like that night there are many nights where I feel so alone. That all this responsibility falls on my shoulders and it’s so exhausting. Mentally, physically, and emotionally exhausting.
Sometimes I wonder how I’ll make it through another day. But than daylight comes and I look down in to the sweet face that is Wally J and he looks up at me and smiles and my heart feels like it could explode. The tiredness, the long nights, the tears, the anger forgotten. Because here is this sweet little boy who was (excuse my language) dealt a really shitty hand in life but continues to smile. Who looks at me like I’m his everything. Who even though, doesn’t sleep well continues to conquer each day with a smile and a coo.
The nights may be long and hard. But the days are full of smiles and laughs. Happy moments watching Wally discover this world. The way his eyes light up when his dad or I walk in to the room. The way his eyes get really big when he gets excited about something. The amount of love I feel watching AJ with him. The overwhelming happiness I feel when he reaches a milestone. The kisses and the snuggles. He goes through every day like he hasn’t a care in the world. He is happy, and for that I am grateful.
Wally has forever changed my life. He makes me want to be a better person, a better wife, daughter, nurse, friend. He gives me the strength to go on. He shows me every day with his smile that life isn’t all that bad. The love I feel for him replaces the tiredness that I feel every day. This little boy needs me. He needs me to be strong. To continue to fight for him and for a cure. To be his voice. I will always try my hardest to do all of that and more.
A good friend is always telling me, it’s ok to not be ok. And as hard as that is for me to admit, I am learning to not be so hard on myself. To give myself a break. And to remember this too shall pass. And even though I am always tired, the good out weighs the bad. The happy days replace the tired nights. I’m so lucky Wally is here. That he’s doing well. Unfortunately some parents aren’t so lucky.
So I will continue to find the strength through Wally and his smiles to make it through each day. I will continue to count my blessings and fight like hell to be the mom Wally needs me to be.
As always Wally’s warriors, thanks for reading.