A Mother's Honest Guide for Getting Through Your Time in the NICU

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Elijah in the NICU
Elijah.

There are many articles and posts that others have written about “How to survive your time in NICU.” I am not sure “survive” is the correct term. Did my baby and me “survive” NICU? Yes, we did. But my time as a NICU mum didn’t end when we came home. Nor did it end when my son had follow up appointments or lifesaving surgery. Nor will it leave me when he will have to have yearly check-ups. It is still with me in the flashbacks, the nightmares, the memories and when I am talking about my son’s first few hours, weeks and months of life.

I want to help those who are finding themselves in the same position we did. I want to be honest, brutally honest about how we tried to cope. That is not to say you will be feeling the same, or you agree with what is being said. These are my personal opinions based upon the journey we took.

There are many reoccurring themes in the advice to those with babies in NICU and this is what I will try and give you my honest and realistic opinion on.

I have to say I was quite alarmed to find a “do’s and don’t’s” guide to surviving your time in NICU. Whatever you decide to do is right. If you do not really want to do something, that is OK. Everyone is different and some may not find the below useful; some may find it the best advice they have ever been given. The fact of the matter is, there is no right or wrong way to deal with this. It’s shit. It’s the worst time of your life. Do what you think is right and what you can to get through this. Nothing is wrong with that. This is not flat pack furniture we are talking about; this is your life.

The following were listed on many of the websites under the “Do” section:

Get to know the nurses. There will be a high staff turnover with day shifts and nights shifts, but if you are in there for a few days you will start to see familiar faces. The nurses from my experiences are normally happy to talk through everything they are doing and help out where they can. They will help explain what the doctors have said and advise on vouchers, accommodation issues, etc. They have seen this all before. They know how it works and they have some idea of how you feel. I found myself confiding in one nurse as it was easier than talking to my husband. Don’t feel like you have to though. They also respect the fact you may not want to talk. They will encourage you to look after yourself. At times I found this annoying but they were just looking out for me. Some of them you will not like or get on with, especially if you have a favorite (I did).

Ask if you can get involved in infant care. This includes nappy changes, bathing their eyes and mouth, etc. This will make you feel involved as a parent and will help. I treasure some of the moments where I was in charge of his feeds, his bum changes and taking his temperature. I felt like I was a normal mother.

I once went in when Elijah had been moved rooms, been fed, put back down and had been sick. No one had noticed and this annoyed me a lot. They were probably over stretched but I feel like you have to tell them if you’re not happy. Every step of the way with Elijah’s hospital appointments, op and various other bits I have always pushed for what I think is best. And you know what? I have always been correct in doing so to get the best for him. This is your baby — if you do not like something or how something is done, or if you want to take over something, tell them.

Take care of yourself and make time for yourself outside of hospital by taking breaks. This one is a hard one. Yes, you have to eat, shower (in Greg’s case smoke!) and it is good to get outside. I will warn you: even though you are away from them, you cannot stop thinking about them or how much time is left until you can go back next to them. My honest advice if you feel like you can’t leave them? Don’t. Eat something before you go in. Take a book for when they are asleep and sit, for as long as you want. If that’s what you feel you have to do, then do it.

Most hospitals have a “family room” attached where you can go sit, read a magazine or make a drink. We did not find these places very comfortable. They are filled with other, often anxious parents with emotions boiling over, and it was a time where we did not particularly want to be that social. Some of these articles tell you to befriend other NICU parents. I was still in complete denial that Elijah even had something wrong with him, so I found talking to other parents really difficult. I didn’t want to talk to my family or friends never mind anyone else. It’s all really hard to watch other parents be told about a setback, or when their baby is not getting better. I had a strange type of guilt I felt when my baby was doing so well and when we went home. It was even worse when one of the babies passed away. I felt why have I been able to take my baby home and they have cruelly lost theirs? It’s a hard situation to even get your head around.

We spent a lot of time walking around (well, I waddled) and sitting in the hospital restaurant people watching as a distraction. I did not particularly want to eat. I drank a lot of coffee, after nine months being caffeine free, I was pretty much hooked on filter coffee every day. As some sort of punishment, I used to not eat or eat as little as I could so I had some control over the situation were in. I felt so helpless. Eat as much or as little as you want. Sometimes you are so distraught the very thought of food makes you want to vomit. Try and eat small portions and often, even if it is a Crunchie from the hospital vending machine to keep your sugar up. I swore by Powerade — it helped keep my energy up without feeling like I was eating. Eventually, you get your appetite back. Just do what your body tells you. Although, when we were in there I think my mind had taken over and it was not my best ally.

Get involved in NICU activities and support groups. In the nine days we were in NICU, never once did I hear the word “activity.” If they had, I personally would not have partaken in them. I am not sure if they think having an arts and crafts table would help. It didn’t for me. There were chaplain and charity volunteers that come round to offer you support. Even now it is only after 18 months of leaving NICU can I even begin to process all this. I didn’t go to any support groups. Maybe I should have, but those sort of things are not for me. I was diagnosed with post-traumatic stress disorder (PTSD) and am on medication. It is only after time has now passed that I feel I can try and get some help and “move forward.” At the time, my focus was my baby.

Focus on the positives. Easier said than done, as I was in a very negative mind space. I was focused on something horrific happening after each bit of good news we had. I was overjoyed when each tube of Elijah’s came out and when he was allowed to start feeding. Small things make the world of difference and you will find yourself telling anyone that will listen that, “baby’s feed has been upped by 20 milliliters,” or “he is now allowed to wear a vest and is busy putting on weight.”

Elijah holding his mother's hand.
Elijah.

Bonding. Although Elijah was with me for 12 hours before he went to NICU, I was out of it for at least 10 of those, so I missed the first proper bonding moments. It is then quite hard to bond with a baby in an incubator covered in tubes and attached to every machine going. I always held his hand, something we still do even now if he has a rare nap on me. It’s a very intrusive time with medical staff, other babies, parents, equipment, noise, lights and cleaners being around. Therefore it may not seem like it, but every minute you spend with your baby is building a bond with them.

As soon as I could, I held him and we used to sit in a chair with him on my chest for what seemed like hours. I was not able to breastfeed, but if you do or if you’re pumping and expressing milk, this all builds to the bonding experience. The hospital actively encourages it. I still feel robbed of the precious bonding moments, and I often feel insanely jealous of those who get to go home on the same day, or even go onto the ward, but I tried. I had small knitted triangles the hospital gave me to keep in my bra so Elijah would be able to smell me. I used to leave a t-shirt of mine that smelled of my perfume in his incubator, and brought his teddies and dummies from home so it felt more like a proper crib. I felt like I was being a mother doing those things, as silly as that sounds.

Keep a written record. I did not keep a written record, as I didn’t particularly want to remember the horrendous time I was going through. Some may find it helpful to keep a journal or online blog as each day passes. Some of the days I just did not want to remember. We have lots of photos. Looking back now some of them are very hard for me to look at, but I want to show Elijah one day what he has overcome. Whatever helps you, do it. I once saw a woman knitting at her child’s bedside. If it keeps your mind distracted for just one moment, then in my opinion it is worth doing.

The following were listed on many of the websites under the “Don’t” section:

Note: I am still appalled there is a “don’t” guide for surviving your time in NICU. It is not like you’re going to not feel any of the below. It is natural and we should be accepting these feelings and not to be made to feel they are wrong.

Isolate yourself from your friends and family. I believe although people can try to understand and comfort you, unless they have been through it, they really do not understand what you are really feeling. You may not even want to admit what you are feeling: confusion, anger, resentment, loss of control, hurt, jealousy, worry — to name a few. That’s not to say they cannot provide comfort and support. Although I pushed them away, I had two amazing friends who did everything they possible could for my family when we were in hospital. From feeding my cats, to driving Greg to and from the hospital every day and even bringing me and my baby home for the first time. I can never thank them enough for what they did for us then and they are a huge part of my son’s life to this day. If you don’t want to talk to anyone, don’t. Let your partner update one or two friends and let them pass the message on to everyone. It can get quite overwhelming repeating the same update numerous times to everyone and then seeing the replies coming in can be quite emotional. If you want speak to everyone and have lots of visitors, have them. I couldn’t face anyone. I was ashamed and I felt like I did something wrong, like I couldn’t have a baby properly. Like I wasn’t a proper mother. I was clearly depressed, and dealing with a traumatic event. I dealt with it the only way I felt was right at the time, on my own.

Elijah and his mother.
Elijah and Vicki.

Become discouraged with setbacks. This is actually what some lists tell you not to do. Of course you are going to be discouraged with setbacks. That’s your child. All you want for them is to be healthy and to be home. Anything stopping or delaying that is a setback. If you want to cry, then cry. If you want to scream, do it. You will be discouraged, of course you will. Accept it. That’s my advice and I believe it is far healthier than trying to pretend you are not anything but discouraged.

Feel guilty for not being at the hospital all of the time. Again, seriously? If you are not at the hospital, try and keep busy and remain focused on something. If you feel so guilty that you think it’s going to tear you up, then try to get back to the hospital if you are able. It’s not worth letting it eat away at you.

Most of the NICUs have a 24-hour policy anyway, so if you want to go back up at 3 a.m., do it. I spent as much time as I could, but I caught the flu and was unable to visit Elijah for two days. I was at home and my baby was 25 miles away. It was extremely challenging. There are so many other emotions going on, you need to make life as simple as you can and listen to how you feel. I wish I could go back and tell myself some of this, but hindsight remains a very beautiful thing.

I could go on and on about how you’re “supposed” to feel and what you’re “supposed” to do. At the end of the day this is your journey, and you must do what you think is right. If you feel something, even if it is negative, accept it. You’re obviously feeling it for a reason, and it’s a natural human reaction to the stressful situation you are in.

You’re doing great by the way, from a NICU mum who spent nine days in NICU with Elijah in September 2014.

Follow this journey on Confessions of a NICU Mum

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How Hospice and Palliative Care Improved Our Daughter's Quality of Life

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When Casey was a baby, still in the first NICU, the hospital brought in a palliative doctor. They explained him as a pediatrician that worked with complex children and made us think he would come in and connect us with other families (something we had been begging for) and give us hope and be this great advocate for us. The day he came in I was looking so forward to meeting him and hearing all the many ways he could help Casey and us. Sadly, that is not how the meeting went. He and his staff, along with about a dozen of the hospital staff (they asked if they could join and use this as a teaching moment since they did not see many children as complex as Casey) brought me, by myself, (this was supposed to be a good thing so Tim went back to work) into a conference room. The chairs were all circled around with me in the middle and each person took turns telling me to “give up,” “walk away,” that my child “would never be more than a vegetable,” etc. To this day, I am not sure how I got through that intervention, which is really what they made it. Somehow, I let everyone say their peace and then I calmly stood, told them all they were wrong and then fired them all from Casey’s care.  Still keeping my composure, somehow I made my way out to the sidewalk where I called Tim to come back and help me get Casey transferred to another hospital. I did soon after completely break down, but I was able to hold it together long enough to let them know they were no longer allowed to treat my daughter.

That was a rough introduction to palliative care. Anytime I heard the word I immediately pictured the grim reaper, cloak, staff and all. For me, early on, palliative was a “death doctor” and nothing more. That was a specialty that was called in when there was no more hope.

I was wrong!

Around Casey’s 3rd birthday we wanted a modified do not resuscitate order (DNR), or an advanced directive, drawn up to insure that some life saving measures we knew would be too much for Casey were not ever going to be done. It was at this time our nursing agency told me in order to do this the right way, I really needed to work with palliative care. No way, I initially thought. I was not interested at all in that again. Our agency kept telling me that it is different now, and the urged me to give it another shot. After lots of reluctance, I finally agreed to give it a shot. I had very low expectations.

We had an appointment for the following Tuesday and on Thursday Casey was admitted to the hospital. We knew any admittance for her was at least two weeks, usually closer to a month. I called the palliative office to see about rescheduling the appointment for when we were sent home, but instead they offered to come by our room that day. It was about 4 p.m. when the doctor and nurse practitioner knocked on our door. The following two to three hours forever changed our lives. They came in, sat down and wanted to know all about Casey. Not only medically, but as a person. What did she like, what made her happy, what did we like to do as a family? It was the first time any medical professional ever asked, or seemed interested in us as people — as a family. They never once told me to give up on Casey. Instead they saw her as this amazing little girl with a full life and limitless potential, just like we saw her.

Palliative care was a part of Casey’s life from that moment on. They helped us to coordinate her care so that everyone of her many specialists (she had up to 16) were all on the same page. They helped us to get the equipment and medications we needed at home to avoid the lengthy hospital stays. They helped us get nursing hours covered so we had the skilled support at home to help with Casey’s complex needs. When we needed non-typical things for Casey, they helped write scripts and orders so that Casey’s care team could help us give her the support she needed without putting anyone’s future at risk. When Casey was having pain issues that we could not seem to manage, it was palliative that stepped in and helped us find a solution that worked for her. The last seven years of Casey’s life would probably have been much shorter, and definitely would have been much harder (especially for her) without all the help that palliative provided.

It wasn’t until the final days that we reached out to hospice. Some palliative doctors do both, but the services are actually quite different. Palliative is not about death and dying at all. They are there to help complex patients make the most out of their lives (however long or short that may be). Hospice, which again, there is some overlap, is about providing support and comfort to those near the end. Some people are in and out of hospice, and some people are in hospice long term. We were in palliative long term, and we called palliative when Casey took a turn for the worse. Our palliative team got us into hospice after that call.

In Texas, once you are in a hospice program, a few things change. All of our equipment and supplies were sent to us monthly and our insurance would deal with each of those claims. We had a handful of doctors that wrote the orders for supplies we needed, and we coordinated getting those delivered each month. Hospice took over all of our equipment, supplies and even medications. As soon as we were officially on their list they would be the ones to provide anything we needed. The idea is that a family can focus on their loved one and not have to worry about the headache of dealing with everything else. Hospice was there to reduce stress and give us time as a family to just be together. They also would come into the home a few times a week and could provide not only our existing medical supplies, drugs, etc, but if Casey needed something stronger they could get it at any time of the day or night. They were there to make sure that she did not suffer for a second, and that we all felt comfortable and understood what was happening.

We made the call to our palliative doctor on a Monday afternoon. Our nurse was out that day and as I was taking care of Casey I could tell things were not good. When Tim came in and saw me completely broken, he knew it was time to make the call. At first we thought we had plenty of time, so we did not rush the process.  The original plan was for them to come out early-mid the following week. The next day was rough and Tuesday night things seemed to be getting worse. We started to give Casey morphine Tuesday night, and had not had to do this in many months. When we got the bottle out, we had enough for the night, but not the next day. Tim called the on-call palliative doctor, which also happened to be the head of hospice, to ask for a new script for morphine that he could pick up first thing in the morning. The doctor asked him a few questions and realized we could not wait until the following week. We needed to get hospice started right away.

Wednesday morning I needed time with Casey and I needed to process a few things. I called our nurse and asked her to stay home. I then sat with Casey while Tim ran out for drugs. My heart was breaking and I knew time was running out. I thought I still had weeks though. I told Casey how proud I was of her, and how lucky I was to be her mom. I then told her when she was ready and needed to go, that she could go. I would be OK, and she should not stay here for me. That was one of the hardest conversations I have ever had.

A little later, the hospice nurse arrived to do all the intake paperwork. She left shortly after Tim got back home and told us she would call in a few hours or if there were any questions. Around 5 p.m. she let us know we were officially on hospice and gave us a number if we needed anything 24/7.

Thursday morning we let our family and close friends know things were not going well. Our day nurse came in and she helped Tim and I keep Casey as comfortable as possible. Tim called the on-call that morning to let them know Casey was getting worse and that we thought maybe some IV fluids or pain patches may help. They said the nurse would be out soon and she could help us figure out what was best to do.  Shortly before she arrived, everything changed. Casey let us know she was done, and so we turned off the machines that were basically breathing for her. I picked her up and she, Tim and I sat on the sofa together. Our favorite place. We loved snuggle time. The hospice nurse arrived and helped keep Casey comfortable. We continued to sit together and Tim and I took turns telling Casey how much she was loved and how proud we were of her.

We had about two hours to say everything that needed to be said. These two hours were a huge gift to us. We were able to say goodbye. Everything on her last day was done her way. That means more to me than anything else. It was all on her terms.

Since we were on hospice, after Casey passed our nurse was able to take care of everything. There were no sirens, no police, no EMS. It was just us and peace. When we were ready, she called the funeral home that came for Casey. We were then able to lay her and her things onto the bed ourselves. Everyone treated her and us with respect. It was an awful day, but it was also very beautiful and peaceful. Without hospice there, it would have been very different.

Our experience was unique to our needs, but I think our experience is a good way to see the different roles that palliative and hospice play. Most people are on hospice for more than 24 hours, but hospice played a huge role in our final hours while palliative’s role played out over seven years.

Follow this journey on Casey Barnes.

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When a Man Asked 'How Dare You Take the Elevator' at the YMCA

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I worked for the YMCA for almost 14 years. When you work for the “Y” and wear a “Y” shirt, I guess people expect you to be healthy and fit. I, in fact, did not work in a fitness center or in a pool. I worked as an executive assistant to the CEO. I loved my job. It made me feel valued. That’s the thing with chronic illness — it steals so much from you, including your sense of worth. But working was very rewarding for me, stressful, but rewarding. I had to stop working two years ago. It was one of the hardest decisions I’ve ever made. I still dream at night that I work. I miss it every day.

During work, I had to park my car in a parking garage across the street from our building. It wasn’t a long walk. But, for me, some days, it seemed like a journey. I would always park in the same spot — second floor (which was the first available floor for permit parking) in the handicap spot right next to the elevator. I received looks everyday for parking in the handicap spot, every day. And I got even worse looks when I would take the elevator down and up for just one floor! I was very aware of the looks and whispering around me. It made me extremely self conscious. But, I had no choice. I needed to conserve my energy for the walk to work and then for my day actually at work.

Many afternoons when work was particularly hard and while taking oral chemo, I actually would go to my car and sleep in my back seat at lunch. You can imagine the looks when I climbed out of my back seat. I can still see the judgmental looks in my head.

One of those days, I was really dragging. I was wondering how I would get myself home that day because I was on zero energy left. One man had the nerve to zap the little will I had left. He looked at me while I was on the elevator and said to me,

“How dare you take the elevator for one floor?! You work for the Y — you should be exercising! That’s being lazy!”

I held back the tears, smiled and said, “I have lung disease,” as I got off the elevator.

The tears flowed. The man was speechless. I wanted to say so much more. Something mean. How dare he question me. Why was he on the elevator and not walking the stairs? I thought of so many things to say after, but of course it was too late.

In retrospect, I’m glad I didn’t yell. I wish I would have used it as a way to raise awareness about my disease. But I did what I could do — what I had the strength to do. The only thing I could do was speak softly and hold back tears.

For all of us fighting, keep fighting, however you can. There is no right or wrong way to fight.

I know it gets hard. I would love for just one day to not have to fight. Let someone else fight for me today. But these are not the cards we were dealt. Just keep fighting the best you can. Please. Just don’t ever give up.

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To the Person Who Judges Me for the Medications I Take

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To the person who judges me for the medication I take,

I see you. I see you looking at me, watching and judging me for digging to the bottom of my bag and pulling out a bright orange bottle with a white cap on it. “But he doesn’t look sick,” you think to yourself. The only type of people who carry pills around are those who are either really sick, or they’re “using.” You know what I mean. You thought it too. “Maybe he’s just a pill popping junkie. I bet those are not even his.”

Well, I’m here to tell you that yes, they are mine, and believe it or not, I really am sick. “How can that be?” you might ask. It’s because “sick” doesn’t look like what you may think. I have an invisible illness. Someone with a disability doesn’t always use a wheelchair, a cane, or crutches. Sometimes it’s tubes, backpacks and pill bottles. We (the chronically ill) hide it very well. We tuck the tubes under our shirts, carry pumps in cute backpacks and even tuck pills in mint containers.

We don’t do this for us, we do it for you and the world we live in.

Otherwise, you might ask insensitive questions or worse, stare at us the way you have been.

What you don’t realize, what you’re not accounting for, is how this makes us all feel. Have you ever considered the challenges of being chronically ill? Well let me tell you what it’s like, at least for me. I’m able bodied. All my limbs are intact; I can stand and walk on my own volition. So, how am I disabled? Well, while all my limbs may be accounted for, they don’t like to stay in place. I snap, crackle and pop, even to the point of dislocating my limbs from doing something simple, like raising my hand. I also take a handful of pills several times a day. This medication’s intention is to pull away metals from my body at a cellular level. Medication can only do so much, so while it is taking out the harmful metal in my body, it is also taking away the metals that are not, leaving me in chronic pain.

Let’s talk about that for a minute. Do you know what helps me feel better, that helps me live my life as “normal” as possible? Pain medication. Opioid, narcotic-based medication. Please note how I said “better” not “good.” You might be thinking, “Oh, here it comes, he’s going to say  ‘I’m not an addict.’” And you’re right, I’m not an addict. The medication I take is habit-forming and puts me at risk for addiction, just as drinking alcohol puts one at risk for alcoholism. The difference is, alcohol isn’t intended to sustain quality of life. Pain medication for many chronically ill patients, does help to sustain quality of life. Never have I taken my prescribed pain medication other than as intended. The reason being, my body already feels like a chemical dump site. Between the iron chelation medication, pain medicine and organ failure, I often feel like Chernobyl internally.

So now you how do you feel? I hope you realize making assumptions about others isn’t helpful. Only education will help others understand. So next time someone shuffles around their bag looking for a pill bottle, refrain from jumping to conclusions. More often than not, they are just trying to function just like you, and deserve the same equal treatment and consideration as anyone else. Oddly enough, invisible illness is a lot like hope — you can’t see it, but it’s there. You just have to believe it.

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When a Man at the Airport Noticed How Much Pain I Was In

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Today at the airport, after a very exhausting week full of doctors appointments and painful diagnostic testing, I was standing in line for boarding and just wanted this flight to be over.

I was in pain, very weak and my stomach has been bothering me for weeks. Since I wasn’t able to eat anything and suffered from severe nausea, I wasn’t sure if I would be able to even make that flight or if my body would force me to an unwanted break.

karina sturm at airport
Karina at the airport.

I was broke, felt completely powerless and was just waiting for my boarding group to be finally called. Because I felt emotionally very weak, I refused to use a wheelchair for transportation to my gate and also decided I would not use pre-boarding because only one bad word of any passenger around me would have led to a complete breakdown in tears.

My body and my mind were way too exhausted to handle any kind of conversation that day so I just tried to hide between all the other passengers like I was normal.

Still, even if I feel like I cannot bear any more I try to be polite and patient with other people. Because if there is one thing I learned through my diseases, it is that you never know how your opposite feels. They might go through even worse things than me. So there is really no use in pissing off others just because I feel bad.

Boarding started, and we made it to boarding group five, which was mine. I was so relieved when I finally could step forward. Every step was one closer to home and my bed. And here he comes, a young man running through the already-empty line three, obviously late for his flight and very busy. People behind me got annoyed and you could hear them sighing.

I tried to find a smile somewhere in my body and asked him to go ahead since he would have been before me anyway. He smiled back, thanked me, but let me know he did not want to upset all the other passengers behind me.

He then looked into my eyes and it felt like he would see right into my soul in that moment. He noticed how bad I was and asked me, “And how are you doing today?“ It wasn’t the usual phrase people use all the time. It was an honest, caring and seriously meant question, and I couldn’t avoid a just-as-honest answer. Instead of telling him that I was fine, which is what I normally do, I got tears in my eyes and said that I was having some rough couple of days. He smiled again and said, “Well, I hope it will be over soon then.“

This short conversation wouldn’t mean much to most people. But to me, this one truly interested person who cared about my well-being brightened my day and helped me get through the flight and find a little bit of positive thinking on this very horrible day.

Everyone should remember that sometimes the small gestures that don’t mean much to us might mean the world to someone else.

With a condition like cervical spine instability, there are rough days, but with a little kindness around us they are so much easier to bear.

Follow this journey on Karina’s website.

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How My Daughter Helped Me Through the 'Dark Days' With My Son's Illness

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Lauren's daughter and son hugging
Lauren’s daughter and son.

My daughter came into this world three years after my son was born. This was about 15 months after he developed the first of what would be a series of health declines in the years to come. (Having spent 15 years searching for answers, my son was finally diagnosed in late 2014 through the NIH Undiagnosed Diseases Program with Brown-Vialetto-Van Laere Syndrome (BVVL) — incredibly rare, with less than 100 people in the world diagnosed with the syndrome.) After the “year of pain and heartache,” grieving over my son’s sudden mystery disease, the birth of my daughter seemed like a beacon of hope in an otherwise dark and scary place. This amazing little creature, so endearing and precocious was exactly what my heart needed in order to heal. She became my partner, my best friend, filling in the piece of my soul that had been ripped out a year earlier when my first child started to deteriorate. I reveled in her growth and development, watching her flourish in ways my son never had the opportunity to do. I watched her closely for signs that she, too, might have the same disease, withholding a little bit of joy out of fear she may start fading away as my son had done. But as time went on and all of her milestones were reached, not only on time but often ahead of schedule, I began to realize she was going to be OK. And over the months and years that followed, I also came to realize that it was she and her luminous spirit that allowed me to get through those incredibly difficult days when I would sit in the dark, inconsolable, wondering “why my child?”

When she was very young, I would often stop and remind myself that “I” set the tone of the relationship with her. I told myself that I refuse to let the time and attention required to care for my disabled child affect the closeness that she and I were building. But as time passed, my older son began slipping away a little bit more. He could no longer walk, or hear, and he eventually lost the ability to use his arms and hands to feed himself or hold a marker. All of this deterioration came with no explanation and, what was worse, no way to stop it.

And with those setbacks, came less and less time to be there for my daughter. My days were consumed with research, doctors and questions — endless, unanswered questions and often hopelessness.

In 2004, my third child was born, another son — healthy, just as she was. Between caring for a newborn and a deteriorating 7-year-old, my sweet daughter seemed to get lost somewhere in the “chaos.” I took for granted her maturity and intelligence that belied her young age. She was a happy little girl who didn’t seem to mind sitting for hours waiting for her brother at therapies and doctor’s appointments. While other little girls were taking ballet lessons and having play dates, she sat obediently in the corner of stark, sterile hospital rooms, listening to doctors direct scientific questions about my son’s mysterious illness to a crowd of inquisitive medical students. As other children were at the playground or learning to ride a bike, she stood by stoically as her brother went through painful medical procedures. She intuitively knew her role was to exhibit patience and good spirits, no matter how hungry, bored or tired she might be. It was just how things were in her world.

Now that she is a teenager, I feel myself grieving for my daughter as well — mourning the years and time lost as I waged my son’s battles with health, doctors and schools. I regret the dance lessons and play dates and normal childhood she was denied. She was always seeking to make her own mark in the world.

And while she has missed a lot of life that others take for granted, she is stronger than other girls her age. She is mature and rational. She “gets it.” Her character is solid and her insight is highly developed. I watch her move through life with a sense of understanding about the people around her and where she fits in. The years spent as a silent observer have provided her with wisdom most of us will never achieve. Her empathy for others is profound. She has no admiration for those who attempt to ingratiate themselves and does not offer her respect without merit. And despite her sacrifices for the care and keeping of her older sibling, there has been little questioning of those things that have been forfeited. Sure, there is sometimes frustration over the choices we have to make as a family because of his disability. There are places we cannot go and things we cannot do. To say she doesn’t feel a little bit cheated would be a lie. Yet, still there is tremendous love and compassion, and something of a maternal nurturing toward him. It is a brother-sister relationship stronger and more caring than most. I realize now what an amazing gift she has been to him as well.

I have also come to realize that I never followed-through with the promises I made to her when she was born. I failed to deliver the time and attention I vowed to give her. I “did” define our relationship, but not in the way my heart intended. She was often brave when I could not be, sometimes strong when I was fragile. She was all the things I should have been, but couldn’t always be. I hope she knows I could not have made it without her. Her gentle spirit guided me during those dark days when I learned that life isn’t fair. When all is said and done, it was she who was truly the wind in my sails for so long, lifting me up when the gravity of my world tried to wrestle me down.

Soon she will be moving on and discovering her own place in the world. She will have an opportunity to define herself on her own terms without the constraints of a family that must function around the needs of one. And she will do great things that will change the world for the better. I know this, because in my world, she already has.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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