It was exactly seven years ago, a normal day at the hospital. I just finished feeding Luke through the tube on his nose. My 5 month old baby with a rare genetic disorder called Methylmalonic Acidemia.
We both dozed off while I was caressing his tiny little head. I was dreaming we were home. The nanny woke me up and said Luke may have stopped breathing. I looked and I thought it was just another seizure attack. The nurses were called as well as the doctors. They said my little boy stopped breathing. They revived Luke, deep down inside I hoped that it was just one of his usual attacks. After 2 months in the hospital I was getting used to the fact that he will have these seizure attacks after the diagnosis.
Methylmalonic acidemia is a disorder, passed down through families, in which the body cannot break down certain proteins and fats. The result is a build up of a substance called methylmalonic acid in the blood. The disease is usually diagnosed in the first year of life. It is an autosomal recessive disorder, which means the defective gene must be passed onto the child from both parents. The disease can cause seizures and stroke. Babies may appear normal at birth, but develop symptoms once they start eating more protein, which can cause the condition to get worse.
I was in denial. After the death of my third child Andre who died of the same disease I was very hopeful that my youngest will survive this. The clock was ticking, and the ICU nurses were called to our room. It was a code Blue for the hospital. The metabolic doctor arrived and helped with reviving of my son. I was calling random people on my mobile phone, asking for prayers and support. My heart was pounding and I was in tears. I hoped and prayed. Please God, not again. Forty five minutes and they stopped. Our doctor looked at me and said “Maybe Luke is tired already, maybe he wants to rest.” She ordered the tubes to be removed from Luke and he carried him and gave him to me. She asked me, “You want to hold your baby? Luke is still your baby.” I took his lifeless body away from the doctor and started crying. I couldn’t remember that I was hugging him so close to my chest that maybe I was about to crush him with my pain and agony. I can’t explain the pain of losing another child. My then husband tried to take him away from me because I was now crying profusely. When Luke was laid on top of the bed. I cleaned his fragile body, put powder on his body and face, changed his clothes even his diaper. Place a blanket on his body while the tears ran down my face. I looked at his angelic face and I knew he was peaceful. After his long battle, rest came to him and somehow there was a tinge of peace inside my heart. I just couldn’t believe it that I lost another beloved child.
But still, I keep questioning myself and God, Why???? Why take my baby away from me? Could I have done more to make him well? What did I do wrong to deserve this? The pain was unbearable especially that it was the second time that I lost a child from the same genetic disorder. My marriage was falling apart then and my children were the source of strength and joy but with the passing of my youngest son I was lost. I was hurt and I was broken. I did not know what to do nor feel. I was becoming numb because of the pain. I find comfort in memories of days I spent with Luke. Days that I saw a smile on his face. Days that we had in the park, Days we spent at home listening to music. Those days I will forever cherish in my heart. I kept their things in a box. Clothes I do not wish to give nor share with others. For me their stuff was sacred. Some people said I have not moved on nor healed. I can say, YES! I have moved on. Life goes on even without the special people around you. But the heart of a Mother never heals when a dear child dies. It will forever be broken. I have learned to deal with the pain through the years. I talked about them as much as I can. I still shed tears whenever I have my quiet moments alone. The pain never goes away, it’s just there. It never passes. You just learn to cope day by day. Many worried for me because they say it’s just too much to bear to have lost 2 children. I have a strong personality and I still have 3 living children that need me most especially with the difficult situation of my marriage breaking down. I knew I needed to be strong for them too. My children Andre and Luke would not want me to be unhappy with their passing. I am very sure that they wanted me to move on and be happy. I am fine now but I must admit that there are days that I just want to break down and die. But I just can’t give up just like that. I know they wouldn’t want their mother to quit easily. Life is precious. There are people who needs me, a mission I still need to fulfill.
Everything happens for a reason. And I have leaned to be a better person and be the best mom to my children. Lessons I have learned which I want to share with others. A story of courage, love, hope and faith.
Today, I remember my beloved Luke or Porkee as we fondly call him. I remember his very short life that brought so much love and happiness. I know that where he is right now is a much better place with no more pain, hunger, fear, sickness and hate. He was given to me to be a part of my life and my heart. For me to become whole.
I love you Luke! you will never be forgotten and you will forever be loved. Rest my sweet angel.
Tagged: A mother's love, Angels, autosomal recessive disorder, children, Coping with the Death of a Child, Death of a Child, Genetic Disorder, Grief, Health, Heartbreak, Letting Go and coping, Losing a Child, love, parenting, rare genetic disorder, single mom