The alarm goes off at 7:20am. I have 10 minutes before my three year old needs her medicine. I hate waking her up for meds, I wish she could sleep as long as she needs. Before I can dwell on this I hear my 10 month old son start to cry, time to get up.
He greets me with the most beautiful smile and a laugh that seems to say “Oh hey, there you are. Did you know I was calling for you?” My heart melts. Time is running out and I can’t feed him immediately so I pick him up, grab the meds and head to my daughters room. He starts crying and squirming in my arms, trying to find his favourite food source. Poor guy, I wish I could instantly ease his hunger instead of prolonging it. I hope he knows how much I love him.
I sit beside her on the bed and cradle him in my arms. Finally he’s able to nurse. Gently I try to wake my daughter, but she is not in the mood. Thrashing and whining that she doesn’t want to take her medicine. I don’t blame her, it tastes foul and makes her nauseous. But, I remind her, it keeps her healthy so she can continue to run around and play with her friends. She doesn’t care, she’s three after all, long term advantages don’t mean much.
She’s getting worked up, kicking and hitting the wall, her bed, me and her brother. I have to stop him mid feed, put him on the floor for safety and then try to calm his sister. My sons cries fill the room, protesting that he wants more. My heart aches for his struggle but his sister needs some support right now. She needs to calm down and take her time sensitive medication.
After she’s relaxed a bit and taken her meds I immediately pick my son up and continue to nurse. He makes adorable little sounds, sighs of contentment that he’s finally back where he wants to be, snuggled with mom and eating, his happy place. I stroke his face and hair softly then put my forefinger in the palm of his hand so he can grab on. I gently rub my thumb over the back of his hand.
Suddenly my daughter gives a cough. Not a clearing her throat or fighting a cold cough but an, “I might get sick,” cough. After two years of living with cystinosis and taking awful medicine, I know that cough well. I desperately hope that she can hold off at least until her body has had enough time to absorb the meds.
We go downstairs and I ask my daughter to lie on the couch and watch tv. If she stays still and doesn’t get worked up there’s a chance she won’t get sick. If she’ll eat some food that’s even better. I let my son down and off he goes, patrolling the area for anything he can get his hands on, the more off limits the better. Then he’s pulling himself up on the couch trying to grab and play with his sister. My happy, busy little boy.
In the kitchen while making breakfast I watch them through the pass through. My daughter’s feet dangling off the couch. My son standing at the patio door, leaning against the glass and smacking his chubby little hands against it. Occasionally he presses his face to the glass, just for a taste, laughing to himself afterwards. It must be nice to be amused by everything.
Despite the rocky start to the morning his laughter and good mood are infectious. He gives me a sense of calm and happiness, despite my worries for the nauseous little girl on the couch. I hope he knows how much that means to me.
I let my daughter eat her eggs, 1 of only 10 or so foods she will consent to eat, on the couch. Anything I can do to keep her from getting sick. My son goes in the high chair for some baby mush the package says is oatmeal. He lunges for the spoon immediately and continuously between every bite, like he just can’t get enough. The difference in appetite between my children is almost comical. As I look over to see my daughter pick the tiniest piece of egg she can find and very slowly chew, it’s comforting to know that at least my son has a rich and varied diet. Maybe I’m not a total failure.
Seconds after taking my son out of the high chair, my daughter suddenly sprints into the kitchen, hands tightly clasped over her mouth. My heart sinks as I realize that all our efforts have been in vain. Leaving him hastily on the ground I go after her and find a bowl to place on the floor. I hold her hair away from her tiny face and gently rub her back while she looses the little amount of food she’d eaten. At least it’s been well over 30 minutes since she had her meds. I won’t have to administer them again.
Tired of being left to his own devices, my son chooses this very moment to need me too. He’s crying and leaning into me, grabbing and clutching to try make it clear that he wants up now. If only I could comfort both of my children together, but she’s still sick and getting upset that her brother is literally stepping over her to get to me. I hope he knows how much I want to comfort him as well.
Afterwards she starts to feels much better so I’m able to pick up my son and we all sit together and watch some more tv. He’s able to be close to me while he plays and she’s able to lie close to me while she gets some rest. Later, when it’s just me and my son in his room, I rock him in my arms and sing to him before nap time. Today I hold him a little bit closer, smell his hair and try to commit this moment to memory. My beautiful, squishy baby boy, leaning his head into my chest. So full of curiosity and laughter. Easy going and loving.
I worry that he feels left out when my daughter needs some extra attention. Maybe he doesn’t realize just how special he is. Special to me, to his dad and especially to his sister. I’ll never be able to fully articulate the kind of joy and wonder that he’s brought to this family. I hope he knows how important that is, how important he is, and how much his family loves him, now and forever.
4 thoughts on “I Hope He Knows”
Oohhh… My healthy girl is 3 and my cysti-Eva is 10 months. It gives me an idea of what it could be when Eva will be 3 like her sister. Nauseas are already terrible here. Did she had a n tube when she was younger? I’m sure your baby boy knows that you love him. 😊 and that you do everything you can for them!
Thanks Valerie. She did have an ng tube for about a week and then we took it out because she hated it so much we couldn’t put anything through it anyway. During that time we learned that she would orally drink pediasure from a syringe and that allowed us to avoid a g tube.
The nausea does get less as their bodies adjust to the meds. She is rarely sick now but in the beginning it was usually everyday. Now it’s maybe once a month. Your little Eva is a strong girl and hopefully soon her body will recover ❤
Hi Amanda, I was just checking out your blog as I saw your profile and just wanted to say you depict everything beautifully. I really wish the best for your family and think you are amazing…your kids are so lucky to have you.
Thank you so much Christina!