He didn’t like to lay on his stomach, he gave signs of discomfort, and he struggled with lifting and holding his head, but we thought he was just a late developer, that it would be fine with time. He also had funnel chest, pectus excavatum, something the doctors at this point said we shouldn’t worry about. And he also cried in a way where I was unable to comfort him. We thought it could be stomach pain, immature intestine. That it would pass after those first months.
When Alver was 4 1/2 months he got a fever and we noticed some twinkles and strange movements in his face. Later we understood this was seizures. We took him to the hospital and from this moment on our lives where about to change forever.
Luckily our hospital have some of this counties best pediatric doctors, if not the best, and we are forever grateful for the way they took care of Alver and for everything they did for him and us. Because they did absolutely everything they could to find out what was wrong, and then to help Alver.
At 5 months old he got the diagnosis, Menkes disease. Not inherited, but a mutation within Alver. Menkes disease is a metabolic disease, caused by mutations in the ATP7A gene that is responsible for transport of cobber throughout the body. This will affect the body both physical and mental, causing weak muscle tone (hypotonia) seizures and development delay. An utterly horrible disease we didn’t even know existed.
The next two months are kind of a blur. We were in and out of the hospital a lot. We wanted to be home as much as possible, together as a family. But Alver was very sick, and we almost lost him several times. I was with him absolutely all the time. Day and night. I almost didn’t sleep anything those months. Wouldn’t let him out of my arms, holding him, carrying him, comforting him, providing him the safest place I could, close to my heart, feeling my heartbeat, hearing my voice.
It was absolutely devastating having to see him like this, in pain, not being able to do anything except being there.
“A mum can never protect her child against all hurt. She can only be there, to help her child through the pain. Over again. And over again.” And that was what I did. With this feeling of something inside me shattering every time, braking, and I knew I could never put those pieces back together, I would never be the same again.
Alver was himself all the way, he made contact, with his sweet little voice and his beautiful, beautiful smile that lit up his and our faces, that lit up our world. I am so glad and forever grateful we got to have him and remember him like that.
But he was very sick, and his little body couldn’t take it any longer. And as much as I long for him, as much as I wish I could have him here with me, near me, forever and always, I am glad he got to rest, I am glad that he is no longer in pain.
Friday, 07.01.2022, 7 months and 1 day old in this world.
Alver was, like always, close to me, laying on my chest, feeling my heartbeat and hearing my voice. Like that, you left this world and flew into another one.
You will forever live on in our hearts. You touched so many with your beautiful soul and you will never ever be forgotten.
You are the midnight sun, the laughter and the fun, the northern lights, the eagles flying high, the stars in the sky, the waves on the sea, the heartbeat within me.
Alver. Our beautiful baby. Oh how we love you!
Ane and Tom Espen, mum and dad.
