Today our son Leo would have been 3 years old. Sadly he was born with Trisomy 18, arguably described as ‘incompatible with life’, and he passed away on the third day of his life. Our love for him however never dies.
To us Leo is, and he always will be, the best part of our family, our most precious gift and the most beautiful baby boy. He had brought out the best in us and changed our lives forever. ‘Anna and Fash’ became ‘Mum and Dad’ and experienced the most divine kind of love - an unconditional, unlimited, selfless parental love that never ends.
Leo made us stronger. He taught us to live more in the present, be grateful for each other and everything we are and have. We gained a fresh perspective to the every-day problems and learned to look at them with more distance and less drama as they seem to be so insignificant in the face of losing our son. It may sound crude, but whatever happens to us, it’s never going to be more heartbreaking than losing Leo.
Today we celebrated Leo’s third birthday. It was a double celebration as we are currently on the two different continents, some 5,300 miles apart. MamaMus, together with her friend Kinga and Leo’s Rabbit completed a 14K Winwick Circular hike and send a message to Leo from the top of Honey Hill in the beautiful British countryside. A little note launched to the sky via helium balloon post was carried by the wind straight to Leo’s address in heaven.
Same method of delivery was used by PapaMus in Los Angeles where he released another set of 3 balloons with Birthday messages to Leo.
We want to believe that our son, unseen and unheard, is always near watching over us and knows how much we love and miss him every day.
Experiencing the loss of a baby/child is one of the most devastating things that can happen to any parent. When, at age of 41, I lost my long awaited and only son Leo, our IVF miracle, I was overwhelmed by grief and couldn’t imagine a way forward. Many people around me, family members, friends, colleagues, neighbours, have tried to make me feel better by offering their words of comfort. Sometimes, however, their (well-meant) support and advice would make me feel much worse. Every parent responds to the death of a baby differently, and not everybody will share my feelings, but here is my list of the most hurtful things people said to me over the past two years following the loss of my son:
Your Son is Now Safe in God's Arms
I don’t want my son to be in God’s arms! His place is here, in my arms. This is the safest and the best place for him - in his mother's arms. Even if you find comfort in the faith and religion would you prefer your child to be in God's arms rather than your own?
It Would Have Been More Difficult to Lose a Toddler than a Two-days Old Baby
Yes, someone actually said that to me, a father of two. The death of a child of any age is a profound, heart-breaking and painful experience. Is there some higher emotional cost attached to the loss of a beloved toddler than there is to losing a beloved young baby? A grief is just as large, real and brutal in both cases.
Everything Happens for a Reason
What could be a good reason for a death of an innocent baby? I cannot possibly see anything-positive coming out of it. Some may say that experiencing the loss of a child makes you stronger long term; it changes your priorities and outlook on life - all of these may well be true, but they are nothing in the face of the heartbreak and devastation I still feel every day.
Not Saying Anything
Some people wouldn’t know what to say to me, so they would choose to avoid any interaction with me. Some would act like nothing has happened and they wouldn’t even extend their condolences nor acknowledge our loss. Speaking for me personally, this is one of the most hurtful behaviours. It’s like denying that my son ever existed, like his life didn’t matter, didn’t mean anything. To me, his mother, his short life meant the world. Everything.
No matter how much it hurts, I want to talk about Leo. I want to tell the whole world how brave was this tiny fighter, how sweet and cute he was, how beautiful, how much he changed us, how wonderful it was to carry him for 7 months and then to feel his warm body resting on my chest, and how much love I and my husband have for him. All I want is an opportunity to talk about my son. I want to hear other people say his name, to be ask questions about him, to remember his birthday... I don’t want him to be forgotten. I want to keep his memory alive. That’s all I have left of him.
This year, on the second anniversary of my son’s birthday, two of my friends, former colleagues, sent me cards with beautiful messages expressing their love and remembering Leo. I was so touched, so grateful. The fact that he was in their thoughts, that they kept alive the memory of him, means so much to me, more than anything else.
It Has Been Too Long; you Should be Over That Now
What does ‘too long’ mean? Everyone grieves in his or her own way and there are no time limits. Our love for Leo and our grief for him cannot be measured in weeks, months or years. And while it is certainly advisable to seek professional help if you've been in a dark place for a very long time, bereaved parents will never 'be over' their child loss and most of us continue to grieve for the baby we have lost for the rest of our lives.
Your Son Wouldn't Want you to be Sad
How do you know what my son would have wanted? Please don't use my dead child to pressure me even more during the most difficult time of my life.
It's not Normal
I keep my son's ashes in our bedroom. Two years on and we still haven't decided what to do with them. At the moment I want him to 'be with us'. It feels so natural to me. Some friends told me that it is not normal to keep your baby's ashes in the house and I should perhaps bury them or transform to a ring or pendant. I don't want to do that. I am not ready to do that. Is it normal? I don't know. It's normal to me.
Don't Worry; you Will Have Another Baby
Let's forget the fact that after 9 IVF treatments, at 43 years of age my chances of having another baby are very slim. Let's forget that. But even so, even if it miraculously happens, it wouldn't ‘cancel’ out the grief of the loss of our son. Children are not replaceable and a new baby will never be Leo.
Happy Mother's Day
Don't wish me Happy Mother's Day. I know I am a mother too and your intention is to acknowledge my motherhood and make me feel better. But please remember that I don't have a baby in my arms. My son died. He is not with me today. I won’t receive a Mother’s Day card from him. I can’t hold him, hug him and kiss him. How can my Mother's Day be happy? Tell me instead that you are thinking of me today.
I Understand How you Feel
No, you don’t. Even if you have suffered a similar loss, you have no idea how it feels like to me.
Instead of giving me your advice and pointing out positive aspects of my loss, acknowledge that there is nothing positive about it. Give me the right to be heartbroken and devastated. Let me grieve the way it feels right to me. Be there for me. Show me your love and care. Give me a hug. Let me cry on your shoulder. Show interest in my baby. Don't be afraid to say his name. Ask me about him. Ask me to show you my pregnancy book or visit my website created in his memory. Help me to keep his memory alive. Show me that you remember his birthday, light a candle, let me know he is in your thoughts...
Today is the second anniversary of our son’s birth. He was with us only for two days, but tender memories and overwhelming love for Leo will live on in our hearts forever.
Our son’s birthday is a wonderful gift and an occasion to celebrate, so we traveled to London to release helium balloons with our letters to Leo. We decided to launch them from Tower Bridge walkway overlooking London from 42 meters above the River Themes. On this unusually beautiful, bright and sunny October day, a perfect wind gently carried away our messages up to the sky. As we watched them disappear, we felt overwhelmed by sadness.
Today Leo would have been one year old and although he is no longer with us, the day he was born was one of the most life-changing and beautiful experiences in our lives. We will be always grateful for being able to meet our son, become parents, spend with him the most precious two days and experience an overwhelming, unconditional, indescribable love for him, that will stay with us for ever. Leo's Birthday is a day to celebrate.
We decided to commemorate this special occasion by sending our letters to Leo, straight to his address in heaven, via helium balloon 'post' from the top of Tochal, a mountain in Tehran, Iran. We travelled 7.5km up by Telecabin to the fourth-highest ski field on earth and arrived at the 3,740 meters early morning. Although downtown the day was quite warm, with the temperature of 18°C, up on the top it was freezing cold (-4°C) with blistering wind, snow and ice-storm. The visibility was very poor and we were advised not to move away from the Telecabin station more than few meters (otherwise we wouldn't be able to see the station and find our way back!).
Our concept of gently releasing helium balloons to the sky and watching them slowly carrying our letters to Leo, was faced with reality and crushed by an unpredictable power of nature. Wobbly on our feet, with frozen hands and numb faces slapped by the cold wind, we walked couple of meters away from the station and quickly let go of the balloons which were immediately carried away by a violent wind.
It was a humbling experience and made us think how small and insignificant we are in the face of nature. Somehow our problems suddenly seemed smaller. In that very moment we felt transformed, lifted, in awe.
Dear PapaMus, Dear Dad...
On this Father's Day I want to thank you for being such a wonderful Dad to me. I was with you only a short time, but I got to know you and I know that if we were given an opportunity to spend some more time together I would have been the happiest little boy in the world and you would have done anything for me. You did everything what was possible, and sometimes what was impossible, to give me the best chance for life. During the pregnancy you were there for me in every emergency situation (and there were many), not only attending to the medical side of things and chasing, questioning and prompting our doctors, but also keeping my mum calm, comforting her and giving her hope.
You prayed for me every day at the church. You kept asking God just to make me healthy. You started to bargain with Him and you asked Him to take your sight and your legs and make me healthy in exchange.
You knew that the possibility of me not being affected by Trisomy 18 was only 0.1%, but still... you never lost hope and to the last moment of my life you believed that I can get better. You were proud of me, you were so happy when I was born alive and that we were able to meet and spend the very precious two days together.
You told me stories, you sung for me during the pregnancy and after I was born, you touched me gently, you held my hand, you looked at me with so much love that only a parent can understand, you held me in your arms like the most precious and wonderful being that ever existed.
You would never let me go, you would have not been able to withdraw my life support even if all the doctors were pushing you to do so. You loved me so much, that you could not possibly make any decision that could result in any harm coming to me. I know you love me deeply and unconditionally.
I am sorry that we were not given more time together, but I also know that I will live forever in your memories and you will create more memories celebrating my short, but filled with love life. Thank you for planting a tree in my memory, for walking a 5K race in LA in my memory, for naming a star after me and most importantly for being the best Dad I could have had.
On behalf of Leo - MamaMus
Today is Mother's Day in America and I feel very low. I've been thinking of Leo and a lot of memories came back with an overwhelming feeling of loss and devastation.
I received couple of messages from my friends with Mother's Day wishes. Yes, I know, I am a mother too, I carried and gave birth to my baby, but the true is that right now I don't have a baby in my arms. My son is not growing, I am not breast feeding, I don't go through all the joys and scares of motherhood, I don't get up at night because my baby is teething or crying. A pushchair I bought for Leo still stands empty in my office. All his clothes neatly folded in a drawer never have been used. I have so much love for him and he is not here to receive it.
I've been trying to be brave, I really have. Deep inside however I am just broken and lost.
I don't like seeing other mothers interacting with their babies, I feel an overwhelming sorrow watching them. I feel angry hearing mothers complaining how hard it is to take care of a baby, how busy they are and how tired they feel. I would give anything to be able to take care of my son, experience all these sleepless nights and be an exhausted and busy mother. I became more judgemental and less forgiving. I feel guilty about my emotions and I feel that I am a bad person judging others so harshly.
I have changed. I am more bitter, more emotional, more... I avoid baby shops. I've tried to go in but I need to go out immediately because I cannot breath and I just want to cry. I feel an envy when I see a woman walking by with a rounded tummy and rubbing it softly. I remember how wonderful I felt carrying my baby and how I loved my big bump.
Today the whole day is about mothers - mothers celebrating with their children receiving hand-drawn cards, shops full of cards and flowers, TV news, social media posts, advertisements... And I feel so lonely in the middle of all of this, so isolated.
People tell me that they admire me for carrying on with the pregnancy after my son was diagnosed with Trisomy 18. They say that I am so brave and so strong. I didn’t want to be brave, or strong. I just wanted my baby.
This emotional 'Lullaby for Leo' was recorded in his memory by a young, beautiful and very talented cellist, Maja Prajzner. Maja, together with her Mum (MamaMus's very close High School friend), 'followed' and supported MamaMus during her IVF treatment, pregnancy and child loss. They both live in Poland, but very frequent email exchanges (well... sometimes few short messages per day) made MamaMus feel like they were close by throughout the whole journey.
Maja performed and dedicated this Lullaby to Leo at the XIII Kazimierz Wilkomirski International Youth Cello Competition in Poznan. It is a wonderful, heart-warming and very emotional gift.
Leo 'is sleeping' in peace.
We are MamaMus & PapaMus, parents of our beautiful baby boy Leo (MiniMus) who was born prematurely with Edward's syndrome. He was with us only for two days but changed our lives forever.