Coping Separation, Neonatal ICU

I have conceived quite later than my “culturally appropriate” age, babies used to scare me. I am more of a toddler person, so much so that all my life I had excused out of holding them. But right after birth, the rush of hormones tore me apart. When they first took her away, they asked me if I want to hold her. And I was said no, first you prepare her and then bring her to me. I did not realize or even imagine her being unwell.  Thereafter, I never got a chance to hold my baby as yet. Its been 9 days. She is not fed. I saw her smile twice, she saw me once. I only see her once in a day on average for 2 minutes. Yet as I touch her, I can see that she trusts me; she needs me, she tells me. It is as if my whole body is chained to the ground on my back and mouth is also zip locked. I can see only, hear only. It is this state of darkness that helped me see the direct connection she has to me. It needs no physical aspect. However, the true moment of separation as she was put on ventillator and put in ambulance, and subsequent distances and each painful separation thereafter is still distressing and hard. I cry out. Sometimes I don’t. Ouch. I just feel relief in not being a witness to her suffering. If you ask me how I feel? To have a baby in NICU, can be like to have her and yet not have her. Milk expressing may become like going to the washroom for a long haul. And rest may be just like some random spur of nanny.

Being divorced once,a step mom, living away from home/family and now with a baby in NICU, I realize most of my adulthood is but about various types of temporary and permanent separations, recognizing the precariousness of a single person alone, the weight of blood relations in the form of strength and weakness at the same time and then there is Him (All too powerful and way too magical world to believe and rely on God). It feels as if my Lord has an exlusive eye for me. As I write this, I feel at peace. I am not tense. It is a sadness that has settled within. Everynow and then, my soul is stretched out to breathe in some extra spirit. It seems now I am coping through resilience. Elasticity to face a situation like this develops ultimately. After all, He is special in, limiting our test to the forbearance of our spirit. Let me talk about this resilience and the test. When you face a difficult situation for the first time, it takes a little while to process it, perhaps years. You have to work on yourself, do some thinking, cross questioning and situation analysis. The basic premise in simple. Trust is the key. I have applied the long learned lesson again. I told myself, I have to separate and rise above all this emotional dilema. Let’s not trust the facility, the people, the system. Let’s just trust my fate, follow the guideline and guidance or advice coming my way and my instincts, above all my heart and my shaping desire as I supplicate.

As soon as I disclosed the news the news of her being in NICU, my parents, my siblings,my.friends and relatives, their friends and far off relatives reached me out. Each one of them in their varying capacity acted out. It was not sympathy, it was action in the form of collective and continuous prayers, financial support, “ghaibana sadka” coordinated and conducted by sibling and relatives back home, application for urgent visa to be here physically, a really angelic neighbour cooking and sending meal for us on a daily basis; a dear relative taking care of my Mother in law for us, endless unanswered phone calls and polite messages. If these people are trying this hard, just imagine How much more Allah is trying to reach me out. I thought over it. I knew it is just my ignorance and insensitivity. I had to observe and look for clues. I had to step us and develop on my ability to differentiate between a false alarm, panic and physical shortcoming Vs true need, and the Space.

The care she is getting is incomparable. She is in Westminister & Chelsea hospital Neo Natal Care Unit. People do well here. It is all over the walls. Parents do well too. They accomadated me many times. I am very comfortable here. There is a bereavement team and also weekly psychological support meetings, free life skills training and much more. Everything is being taken care off for us.

Sometimes, a person do comes across someone seemingly not fitting for the duty.

I mean I was delivered at Northwick Park and the midwife was frail, shaking hands and old but I cannot explain how far I am satisfied with her. It’s always our narrow vision that lead us to poor conclusion and particularly bad experience at any NHS hospital. On the other hand, it is Allah who places the most deserving and capable person in the right position and at the right duty.

     In each of my various experiences of separation, I realized coping involves two things, I.e. recognition of type of situation and articulating its status. First, to recognize the situation, is it permanent, transitionary or temporary. For example, until death, any illness is but temporary even the most terminal ones. Similarly, until divorced, children do separate from ones parent to form a new family space given all goes well. Second, the articulation of the current status of your relationship with the individual you are separating with. On one hand, it is her space, her needs and her point of view and then it is to be considered in relation to your capacity, your role and it’s limits. I tried to to focus on mastering this and laying out the new rules, mediums and means of expressing what it is between me and my baby.

I see my child, my little angel. In my tummy, she will signal me that she wants to eat a banana. If I have it around, I ‘ll just eat. But then there were times, I am short of bananas, markets are closed, or I can’t travel, she would persist. She could wait for 18 hours without food to have what she want. And then there were dishes, she waited for few days as well. And if I try to pacify her with alternatives, I only felt nauseatic and regretted. I was apprehensive that she might be very stubborn. Little I knew, she will face something like this. She is a fighter. Up til now, each part of her body is pricked, put on pain killers, sleeping drugs. She has red marks, green ones and she is chained in internal and external web of tubes and monitors. She is hanging in there! I had never seen a adult being going through so much and this is a little baby.I just awe at the nurses. They face this every single day here and yet manage to smile, to function, to live. Both she and her carers are made for this!

Let me put this in perspective. I am here at the hospital. For a normal parent, it all begins the very first day, nursing, hugs, smiles, poo, pampers and the new nick names. For me it is transitionary. Initially, I felt a large hole – unable to speak up, overactive physically and feeling unaccomplished. For first two days, I really could not wrap my head around it. The resonances were, “I have not held her even”, “she is not fed for two days now”, “they have even removed her hat now”, “if she opens her eyes, due to her narrow view, she won’t see anyone”, “what is with these numbers on the monitor”, “she is probably never meant to be with me”. Moving from “normal” mother responses to denial to finally seeing where I stand and what I need to know and work on at the moment. And let me not belittle the emotional outburst, “ whether I should cry or not cry, see or hide. Touch or leave”.Lyn from the bereavement team here, told me you may cry more over time. And some other doctor told me, if you feel like crying, you should cry until fully satisfied. As if, it is like pee. If you hold it, it is infectious. Women also tend to cry more than men given her hormones at birth.

It was on the second day, I realized I was only thinking about myself. I had to think about her. She needed me. What, I was bothered about,  had already been taken care off. It is NICU of the top hospital in London. I asked myself, “Am I trying to prove I am better than the most Pro?” Then I asked myself, who am I? What is my present responsibility? As a mother, you have to take care of two sides, to ensure she is feed, clean and all wrapped and then there is- is she is having her quality time to feel secure, part of a family where once she was in the centre, I.e. the pregnancy phase. This lead to more useful chain of questions, “How can I ensure this from a distance? Of course impossible. I just compared my womb to an incubator. I remember her responses to different things. Her response to our romance, food, my touch, our conversation in our native language. My loving and playing with other babies and kids. I added that touch. I started off with treating her as if she is not “sick”, she is just visible in the womb. I would touch her and talk to her. I was afraid that I may not have any response but there came many. First was her calming down as I touch her, then her stretching her hands to ask me to hold her, then she smiled. I was over whelmed with the satisfaction of her being there, alive and having a role in our little family. The smile is still stuck on my mind, I dream of it even. It had the most soothing effect. And then she tried opening her eyes to see me and then she conveyed that she is uncomfortable lying down in a certain  pose. Then came being afraid to shift to theatre room. I was able to let her look at my face before she went in there. With me, my husband started interacting too. Now we talk to her in this new language. She even has a “signal nickname. It is a drizzle of joy each day. But mostly it is reliance and strengthening through trust. We are making memories, we are living. I am not worried about anything. She is doing well. The best part is I feel blessed and I ha e hope and positivity. I tell her I got her milk, I read blessings and protection prayers on her and read fatihah for her quick recovery. There will be more to do soon. As you begin, it rolls out.

Had I tried to hold her, to insist on feeding her, to bother about what I need not bother. Or, had I just given up and closed my access, I may have missed so many special moments. It would have been a total disaster. I gave these nurses, doctors, surgeons their space and I wait for Allah’s guidance to see if I can be more helpful in any way. I have blocked few areas of observations, I don’t pick on mistakes or try to look for faults, I just hang in there. I do what I do. I have time, I write. I collect milk, I try to get more information on planning her next stages. And most importantly, I work on this blog.

This is working. My advice, “Let things be, just play your part”. It is doable. I feel freedom.

Look at it this way, when you are somewhere, it is a complete space. Accept this and then explore it. Do not call out for help. Venting out anger is only good once. After all, a person does not face a certain trial of life to hurt others. If you feel weak, unsure and not fully satisfied, reach out for help. Do not over perform. Just relax. Answer to help available, observe your surrounding and adjust. I do not use the word mould. Circumstances are staged for us to grow and embrace only.

This brings me to the topic of “functional” broken relationships. The very question, is there something called saving a relationship? Does divorce adversely or positively effect kids? Should one disclose the news about divorce to kids? The answer is same, there is no point in holding on to a dead body. After death, the corpse is only processed to release foul gases, pollute environment and what not. Let it lay in rest and work towards personal emotional independence. Our generation, infact any generation is ready for what it faces. If we pose other wise, it could be determental instead of being helpful. Play safe, there is no point in blind folding your child to the biggest reality of their future. I think the idea of separation must be discussed with kids. There is special needs assistance available, nannies trained to handle emotional wieght. Just look at the amount of children literature available out there. Also during separation, both parents have specific place and role in the family. Give space and respect but focus on the boundaries and limits. Imagine a diabetic, if you feul her once in a while with a spoonful of icecream, it is really refreshing but if you put her on daily doze of sugar and increase it each day for she complaining, whining, and making faces or throwing tantrum, it is alarming. You need to stay away from her. Same goes to separation that leads to divorce. One thing is for sure, “ it.can never be and it will never be a regular family experience.” There can be occasional spur of everyone getting together. But remember it is sugar, the primary detrimental thing. 

In Islam, the separation is for three months and then it is permanent. Also an episode of separation cannot repeat twice. The third time, a person decides to separate, it is considered divorce. It is significant to note that experiencing separation is extremely consuming and painful. To face the same thing viciously is not healthy. It does not create resilience in the soul. It deteriorates.

Here one also needs to consider illnesses leading to death. If you are a family to a terminally ill person, you have to realize that he is still alive, needs care and above all a recognition that he is someone who has something to do here, a respect, a part in your family, share and cherish his presence within the very rudimentary means accessible to you, a new pair of sweater, a polished shoe, sharing licking on ice cream other than the usual broth and soup.

 I am sure, I still have many unaswered themes to pick on. How to apply this to your specific family setup and complexity? Is it even applicalble? The answer lies within you. Explore it, discuss it. There is help all around it. You just need to answer it. Private msg me on areej@sensitivesense.com. Perhaps I can help you see what you are not able to observe in your space.

 

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