I thought I was challenged when I got so sick. Writing this in an isolation room at the children’s hospital, I must tell you – that was only the beginning. Being here with my 4-month old baby who is fighting pneumonia and bronchiolitis, hooked up to the oxygen, IV, and monitors, looking at me with pain in her eyes while they are jabbing her trying to find a vein that is so tiny it keeps evading them, – this is a whole other level of hell. And in this dark helpless place, a positive hopeful outlook is not just a good idea – it is an absolute must.
Parenting comes with an immense level of responsibility that includes the necessity of making very tough decisions on behalf of your children. If you are overwhelmed by the events to an extent where you are so depressed or shocked that you cannot make a decision, it can spell disaster. People that attempt to bully you in this very vulnerable time to steer you towards a decision that is preferable to them, exacerbate the situation. This is frequently coupled with a lack of informed consent, a stressful environment, and lack of sensitivity by individuals who should not be working in people-centric jobs. Staying strong, positively-oriented, and clear-headed is crucial in such circumstances, but oh, is it ever not easy!
I have to remember to be focused on my baby and what is best for her. If that means asking the doctor questions about side-effects, risks, benefits, and alternatives and endure their eye-rolling (an enlightened approach to patient-centric care), so be it. If that means asking for a different nurse because the aforementioned conversation with the doctor has me somehow labeled as “homeopathic believer” (I truly wonder where on earth that came from as neither homeopathy, nor any alternative medical approach has been mentioned in the exchange), then that is clearly the best course of action for me and my baby. Being on the receiving end of ignorance, off-handed insults, and additionally sheer incompetence at simplest tasks with which other nurses have no problems, is not going to speed up my baby’s recovery or provide her with more comfort. It has me wondering why a person who can get so fumingly righteous over a normal conversation that it completely takes over their professional conduct of a sick baby and worried parents, would ever want to be a nurse. But ultimately, I do not even want to spend my energy wondering about that. It is unproductive. I must focus on my baby instead.
I have to remember I have a support network. Being brought up reluctant to ask anything of anyone without feeling guilt of intruding on other people’s lives, this one is really hard for me. I am also used to living on my own, taking care of myself, and not having any family or friends around to rely on. Accepting people’s suggestions of help is foreign to me, and I always feel like I’m taking away from their time. This attitude of mine is extremely unhelpful and makes adjustments to unexpected situations rather difficult. And so I struggle to say yes when it makes sense and try to think of how other people can help. My partner and I are good at mobilizing efforts when needed, but having an older child who is not allowed in the hospital, due to visitation restrictions currently in effect, requires additional resources. I must learn to receive help with gratitude, in the spirit in which it was given.
I have to brace against being constantly interrupted. It feels like every fifteen minutes, whether the baby is asleep or awake, someone comes in to listen to her and check vitals, to assess her state and administer medications, to ask me questions and to provide information. The baby needs to feed and to try resting among all the interruptions, and so she needs me. And without fail, as soon as she finally falls into exhausted sleep, someone shows up to wake her up. I try to help her rest and breastfeed frequently and I have to fit those things into the endless flow of ministrations she receives. Being not a people person myself, it is also hard to constantly have to interact with others and depend on them, but there is no choice and I adapt. The interruptions and the need to be present every moment are mentally taxing. I must keep in mind the positive: this is all a thorny journey to help my baby get better.
Within all this, I must remember to take care of myself. This is the newborn period all over again: baby needs me day or night, and day or night I must have enough energy and be clear-headed enough to tend to her. This means attempting to have regular meals, fluid intake, and sleep. This also means that since the breastfeeding has been disrupted, I need to pump or she will not be able to latch on. It means that the day flies by in small 10-minute tasks, some of them futile, such as attempts to rock the baby to sleep, and drags on in unexpected minutes of her fretful rest. And I have to make peace with that.
I have to try to not let despair and anxiety take over. And it’s so damn hard! Every dip in her progress or lack of change for the better over a period of time has my heart plummeting and makes me pace the room. Waking up to her heart rate dropping low and alarms going off has me enraged to tears at how helpless I am to make her better.
I have to remember that my baby needs my strength, the warmth of my arms, the calm of my words, the comfort at my breast, – no matter how broken and hopeless I feel at times looking at her struggling to breathe. I have to will her better, to provide the energy when she is so exhausted. I must be a stable presence, always there for her, trusting, believing, hoping, and willing that it shall get better and she shall smile again.