http://www.justgiving.com/Sebby-Law - PLEASE HAVE A LOOK HERE TOO AND CHOOSE

21.01.10 - Funural is behind us now, so I have taken the info off this site, but instead we would like to publish our speech, that Roland brilliantly red out at Sebby's service. When he was going up to read it in front of everyone, he said: "Excuse all the crying of the front row please! They think I got up to sing..." Humour is a miraculous thing, indeed...

TRIBUTE TO SEBBY

I’ld just like to convey a few words that are close to mine and Liza’s hearts.

Sebastian Soames Law... we couldn’t name him for ages... It took us 11 days. We wanted something original, yet not corny, something that could work in both English and Russian without sounding ridiculous. We were imagining his future with his name: simple, yet gracious in our opinion... Now his future will remain a fantasy for ever...

During Sebastian’s life we have gone through every emotion imaginable: - mainly love and affection, but at times fear, anger, sadness, frustration, pity, stress, and guilt would set in and linger around.

In fact it became the biggest emotional roller coaster ride of our lives and during this time both our physical and mental health suffered.

We constantly asked questions that no one knew the answer to: - why us? Are we being punished for something? What will become of our family? Can we do anything to dramatically improve Sebastian’s quality of life? Liza never lost hope, but even when feeling desperate herself, she kept on assuring her family that things are not so bad, that it will get better, knowing full well that it won’t.

These are merely a few of the hundreds of questions and thoughts that have and still are swimming around our heads over the 40 months of Sebby’s short life, and to not have any answers has added to our exasperations.

We occasionally came across outside pressures also, and we felt that any criticisms and preconceived judgements concerning mine and Liza’s caring for Sebastian was unfair and sometimes crass. People just saw what was at the surface and immediately apparent, but they have not been there during those horribly long, scary nights, when things often took a turn for the worst. We want to say today to everyone that unless you REALLY know something, please don’t judge, judging is easy, but the majority of times is completely unfair and hurtful.

We were our own biggest critics and we knew that no one quite knew Sebastian as well as us. Liza especially, as Sebby’s mum, possessed an extra sense of just knowing Sebby’s moods and needs that little bit more than the rest of us including the doctors treating Sebastian. It may sound farfetched but I know this to be the truth and we know that thankfully the vast majority of people who do not have severely sick or disabled children of their own do not know, and will never truly know the stresses and strains suffered by us the parents.

Today, 10 days after our beautiful boy’s death we are still asking many questions and still knowing few answers. One or two of the more destructive emotions are thankfully subsiding to be replaced by the healthier feeling of relief that our beloved boy won’t have to suffer any more pain or anguish caused not only by his condition but also the repeated tests, examinations  and treatments carried out in hospitals around Europe.

We are trying to remember the best moments of his life:- when he tried “walking”: if you held him under his arms he would simulate walking movements and although we knew that it was only a stepping reflex, which was supposed to go away shortly after his birth, to us it was WALKING. If you had put him in the bouncer, he would bounce and we would be so happy that we would run to get the camcorder to record these rare occasions of some sort of normal behaviour. He was OUR normality, we knew no different and those pitiful looks that followed us wherever we went would immensely upset us. We learnt to accept things just the way they were, but without losing hope and we were really grateful for each day with him.  It was the hope that carried us through these 40 months, it is the hope that he is finally at peace and can really walk, talk and see, wherever he is, that keeps us going now.

Sebby also had an excellent nanny throughout his life. And although she is no longer working with us, it would be unfair not to mention her and her hard emotional and physical work. She gave him a lot of love and became his god mother a year into his life.  In fact, our little Sebby was not short of love.

Liza, Tim and I miss our son and brother beyond belief. There isn’t a minute that goes by where we don’t think about him and the joy he brought into our lives. We still think it was very unfair for Sebastian to be given such an impossible task to have to overcome in his life and it is hard not to feel bitter.

Sebastian is our love, he was our challenge, he is our beating heart, he was our little boy who we loved from when he was inside the womb and who we will love to the day we die.

He taught us to be more compassionate and understanding, to be more altruistic and benevolent, and I know that we will live our lives imperfectly, but I also know that thanks to Sebastian, Liza and I will be better people and for that I am eternally grateful.

We love you Sebastian  

Finally we would like to mention the fundraising that we are doing in Sebastian’s name: we are set out to raise £5000 for Archie foundation in the Aberdeen Children’s hospital – this fund helps families like ours to be with their kids and have a better quality time together when it’s most needed. And then £5000 for the Neurological Research Campaign, which is there to try to establish the cause of all the suffering by children like Sebby.

Website are www.justgiving.com/sebbylaw and www.justgiving.com/sebby-law, you can find our thoughts and pictures there as well as get a chance to change this world for a little better.

Liza and Roland

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On the 2nd of January of 2010 our little baby boy left us at 18.10 and went to live in heaven. We are left behind and yet not sure how to go on without him, but I'm sure we'll find a way to live with him in our hearts forever.

Sevonka had suffered a lot of pain during his short life and he was loved and adored by those who came to know him. He never made a fuss and we all love him so much. He has left a great impression on our lives and we are missing him more than words could ever convey. We will always cherish the happy times experienced during his short life and these happy memories are in our hearts forever.

We thank all those who cared and contributed to making little Sebka's life as fulfilling as possible and we are especially grateful for the love and care given by the nursing and medical staff at Aberdeen Childrens Hospital:- you were fantastic!

Sebby left peacefully and we know he will never have to face a difficult challenge again, and for this we are relieved.

Sebastian, we will always love you. Papa, Mama, and Timka. XXX

We would like to ask anyone who was considering buying flowers for Sebby's last day here to rather donate money to the Archie Foundation, whom helped us immensely and will go on helping very very poorly kids and their families.

Today, 5/01/10 at 01.38, I would like to add, that this is not a competition, it really DOES NOT matter how much money people donate.... The whole idea is to give... Most of us, don't know how to give, we take, take, take until it's too late... Sebby taught us how to give and not to expect ANYTHING back: not even a smile and I want people to look around and see what they have chosen not to see before and GIVE without expecting even a smile back.... Liza, Sebby's mum forever.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - It raises more, whilst saving time and cutting costs for the charity.

Anything counts, even if its a few quid and it's highly apreciated! Many thanks.