5 Stages in Special Parenting
In our personal special parenting experience, my husband and I have been through 5 stages. This is how it was for us.
Stage 1: We might have a problem
4 weeks before Joana was born, my doctor told me that the baby seems a little smaller than it supposed to be in the 35th week. But in the next ultrasounds, there were no reasons for an alert. The conclusion was that the baby will be born a little smaller, but that happens, and it not necessarily means a problem.
Joana was born 2 days before my due date, which was perfectly fine, and she wasn’t so small, 3 kg and 48cm. That’s a middle standard for a baby girl. But her Apgar score wasn’t so good. It was 7-5-7 because she didn’t breathe right away. We were told that this doesn’t mean anything.
We are not someone who panics right away, and we were focusing on the fact that she has a good sleep rhythm; she latched on the second day, and the breastfeeding wasn’t an issue for her or me.
It really seemed that everything is ok. We went home happy and eager for the future in a blissful unknowing how the world will turn upside down soon.
In the first 2 months, we were classic newbies parents. The perfect material for a family comedy, with all those clumsy and inexperienced moves when bathing and changing dippers. We were enjoying with our brothers and sisters and the grandparents. Joana brought a lot of joy to our family.
But from time to time, there was a doubt in me. She seemed to steer too long in a blank wall. And whenever I talk or sing to her, she never looked at me directly. And she didn’t smile in the first two months. I knew that every baby is different. The fact that she didn’t hold her head, or focused with her eyes, and looked at blank walls, I thought it’s because she is just a little late. She is too small, only 8 weeks old baby.
Stage 2: O shit, we have a problem
This is the stage when something big happens, and the parents are in a terrible realization that something is seriously wrong. The reality hits really harsh at this point. There is no doubt that we are in front of a major challenge. For us, it was shortly after she turned two months. She got epi seizures. We went to a hospital right away, and we stayed there for 7 days. I can say from this perspective that it was the most horrific experience in my entire life. I don’t know how I survived that shock. I didn’t have one minute to catch a breath and grasp everything that was happening.
She had seizures every 15 or 20 minutes, and they were lasting around 2 minutes. When we got there, it was in the middle of the night. In the morning, a real action began. Doctors and nurses were coming in and out. They were taking blood from the vein at her forehead. They did a spine liquid examination, and she continued having those seizures.
The doctors and the nurses were acting fast, and they wanted to find out quickly what was going on with my baby. I was so grateful that she will not remember this trauma. But I almost broke looking at her suffering like that.
I kept answering the pregnancy questions about the delivery, about these two months when we were at home. Is she eating and sleeping well? Does she cry a lot? Did we notice something was happening? Does she have a problem swallowing food, etc.?
I answered that the sleeping and eating part looks normal, and she is gaining proper weight. But she doesn’t make eye contact and doesn’t know how to drink from a bottle. Also, she is not smiling, nor holds her head alone.
This stage 2 lasted till her 12th months.
For 10 months, my head buzzed. I couldn’t hear my own thoughts. I was acting on an alert mode. Besides coming up in my mind, “O no, I can’t believe this is happening. It must be somehow my fault.” I felt extreme fear and denial.
The fear was expressed in the thoughts: will she even survive? What will happen to her? And the denial was expressed in visiting many different doctors for 2nd, 3th, and 4th opinion. Hoping that the next one will say something different and offer some kind of solution. Someone who will say, “Yes, I had cases like this before, and they are all fine, don’t worry, it’s nothing.” It was denial by the book.
Finally, the moment of truth came. We went to the clinic in Ljubljana, Slovenia, to do some tests and hoping to get a diagnosis. Joana was 6-month-old. There we found out that it’s clear that she has brain damage. It’s not sure whether she was born that way, or the brain damage is because of the seizures. They couldn’t tell what kind of challenges she will be facing, or will she ever speak, walk, or how long she will live. And they couldn’t find out her diagnosis either. That was the moment when we decided to move to Germany.
Doesn’t matter that we don’t speak the language. Doesn’t matter that we don’t know anyone there. And it doesn’t matter that we have no idea how the administration or the health system functions in that country. What mattered was our belief that Germany has the best health system, hospitals, and doctors in Europe. That’s where we want to take Joana.
When the summer came, the reality hit even harder. She was an 8-9-month baby, and it was clear that we are in the middle of a challenge that won’t go away. Her physical challenges were obvious. She couldn’t hold her head and slept too long because of the medications for epilepsy. But in the meantime, she started to smile. Sometimes even out loud. Her smile was precious. It gave us so much hope and will. And the power to bring fast decisions.
When she was 10 months old, my husband went to Germany to find a job and an apartment. When she turned 1 year, she and I got on a plane to Germany to continue our adventure.
The stage of denial and shock ends up here. And the stage of “I am a loser” followed.
Stage 3: I am a loser
When the shock and denial phase was over, next, I felt sadness, despair, and worried for the future. I felt like a loser. I felt like big injustice happened. But it’s not like I had the luxury to lie down depressed and deal with this kind of thoughts and self-pity. As I felt all that at once, I was taking Joana to many different therapies. I was dealing with her episodes of long hours screaming and crying. I tried to figure out my new environment: the new supermarkets I was supposed to shop groceries in, filling the new apartment with furniture.
I was dealing with the fear and the guilt that maybe I am not doing enough therapies with her, and that’s why she doesn’t progress. How long is she going to live? I don’t want to lose her.
We’ve taken her to many doctors’ appointments, and they’ve done so much researches on her. And each time: there are no results. It’s an unknown diagnose. That means she has something very rare, and between 1.800 genetic mutations and possible syndromes, it’s not easy to find out where this comes from?
Our hopes would rise high whenever we went to new research, and then fall down immediately when they couldn’t find out what it is. Also, we felt terrible when a new crisis would happen to her. We were constantly worried and sad about her quality of life and everything she is missing on. In the meantime, we took different courses to learn the language. In the first 2 years in Germany, we practically didn’t have private lives other than Joana’s care (which slowly became a 2-man job, 24/7) and learning the language. Plus, my husband was working.
Back in Macedonia, we had careers in a bank. In Germany, my husband had to work different labor jobs because he didn’t speak the language. So, we were learning German whenever we could. No movie nights, no fan relaxing activities, just learning, learning, learning. My husband was the one who especially committed to learning as much as he could, giving the fact that he was supposed to work while I was taking Joana to therapies and did everything around her.
In this stage, it wasn’t all so black. There were short periods of relief. For example, Skopje is only 2 hours flight away (luckily), and our parents often visit. We flew there also. Joana and I are pretty experienced travelers😊.
Plus, shortly after we settled down, my sister and her husband moved to our city. And a few years later, my husband’s brother and his family have done the same. Having our family so close is a huge blessing and a reason to be relieved, at least shortly.
Very soon after being a little suited, the reality would hit again. We would realize everything that she is missing on. Not playing on the playground, not going to movies to see a cartoon, not running with other children, not playing with her toys. I was focusing on everything that she can’t, and I felt a lot of pain. That’s why I know what you are going through. I’ve been there. That is why once I’ve reached new happier places, I committed to what I do now. That’s why I’ve become a coach for special parents.
Honestly, my job is like I am helping my past self. Because not once I had a client who didn’t have a part of my story.
Whenever I talk to special parents, we are finishing each other sentences in our first session.
This stage lasted until she was 2 years old.
Stage 4: We have to keep trying
Between the ages of 2 and 4, we felt that we should try more and do more actions. But we were expecting a big improvement, and we were disappointed many times at this stage. We’ve done so many things but with very low energy. Little by little, we were losing hope. We found a small consolation and a little joy when we had help. Sometimes one of the grandmothers would stay with us and help around Joana.
We would go out with friends or even go away for a weekend for 2-3 days in those periods. It was rare, like once a year, to go away alone, but it was refreshing. Also, we would find relief when a stable period would come. For example, there is no crying, great appetite, perfect sleeping timing, relaxed muscles, etc. And the stable period lasts until the next cold, the next crises, the next seizure – and here we go again.
Consoling was the fact that she loved to go to kindergarten. I had mixed emotions when she started kindergarten. On the one hand, I was glad that she is enjoying it there. She was smiling most of the time, and I could see that she was content when we were going home. On the other hand, I watched the other children, and my focus was on everything that she can’t.
We were like on a roller coaster all the time. One day everything is heavy and black. There is no light at the end of the tunnel. The other day there is great hope. I would hear from somewhere about a child who started walking at the age of 10 or another place where I can take Joana. We tried different forms of alternative medicine. Still, I felt a little bit of denial from time to time. Sometimes I’ve set high expectations, and then huge disappointment would happen.
Stage 5: Finally, acceptance
The acceptance came unexpectedly. Before her 4th birthday, we were staying in a hospital specialized for epilepsy. It was 500 km away from our home. It was just Joana and me, and we were supposed to stay there longer so the medications setting can be effective.
Hospitals are huge stress, especially when there are many EEG and blood tests included. After 1 pm, the whole examinations and therapies would be over, and Joana and I would walk in the nearby fields until evening. During those long walks, I had a lot of time to think and organize my thoughts. I looked at our situation and our lives from many different perspectives. For the first time in my life, I’ve noticed how my thoughts are affecting the way I feel. And I’ve seen how I feel when I think, “Why me? Why me?”
I was feeling better by thinking, “How to look at this? What am I learning with this?”
How I accepted will be a whole new article. But this is the last stage for us as a family, and I am still in this place of happiness, peacefulness, gratitude, and joy. It became a way of living.
What have I learned about focus in all of these stages? When I was in the first 4 stages, I would rarely see a relaxed special parent that talks relaxed and is calm with their child. But from time to time, I would meet a special parent that seems like they don’t struggle at all. And I was always in awe, how did they do that? How can they be happy and relaxed in this situation? Is there something I am missing? I want to be like this. And most of the parents I was meeting was just like me. At the same place as I was.
But when I accepted, I started to see parents like this all around me. I made so many new friends. I’ve met mothers and fathers who completely accepted, who found out how to be happy despite all the challenges. Parents who have faith that there is a bigger reason for all of this, and until we clearly find out what it is, they go with a little faith. They learned how to focus on what’s good in the circumstances rather than on the limitations.
They were finding a way to improve their lives and to stop pity themselves. They praise and are grateful for everything they have. They know things really are getting better and better for them. That is the power of the focus. Where you look, which thoughts you have, the reality will give you more and more projections for where you look. When I accepted and said: Joana, I trust you, you know what to do, and I am not trying to fix you anymore; then I started to feel better, happier, and to meet like-minded people.
Do I still fall? Yes, many times. But not as often as before and not for too long.
Writing this article, I saw the need to explain more deeply how exactly I have accepted.
That article will come soon. In this one, I was only explaining the 5 stages of special parenting. Live me a comment if you have any other stage to add.
Find other parts of our story in the previous articles: