Tears In Heaven

I can remember quite clearly the point when I realised that Louie was going to remain part of the family.

I love my music and often listen to it when working in the kitchen. I also love my food!

My laptop scrolls through my tunes and came to a song written by Eric Clapton about his son after he died. The words hit me and I realised that I had a responsibility beyond anything I had ever been given before.

I have a faith, maybe not as strong as others but it is there none the less. In a strange way adversity does strengthen it. I could say why has God done this to us, but then again, why not?

Anyway, why should God have done it, is it not just nature? I don't know and neither do much cleverer people than me.

In many ways I now pity those people that have the 'perfect' life, they will never truly appreciate what they have. We do and we are grateful.

Mummy's Story

First & Foremost

We have an amazing & gorgeous new addition to our family. Louie is our much wanted 3^rd baby. We absolutely adore him, love him, and, like all our children, will do anything for him. Louie is our ‘angel’, our own little angel.

My Pregnancy

Like most pregnancies, the 9 months were hard work – and that’s before you include our two lively toddlers to look after as well!

For the first 3 months I was plagued with ill health, which took its toll on all the family. However, after several doctor visits, a couple of courses of antibiotics and the onset of spring, I soon recovered. By the time I was 6 months I already felt like a beached whale, even though friends & family kept telling me I was neat!

We had a scan & nuchal measurement earlier on in the pregnancy, to determine the risk of Downs. This returned a risk of a 1:249 chance. We opted to have another test done with another consultant, & this test returned a result or 1:2,700 chance. We were re-assured & decided not to opt for an amniocentesis.

My pregnancy continued, so did the tiredness & morning sickness, and so did the boundless energy levels or our 2 children. I quietly gave myself a gold star for getting through the summer holidays with them and the pregnancy!

My Mum visited from England to help out early September, and on the morning of her departure back home, I humbly asked if she could stay a bit longer…………I had begun labour – two weeks early!

The Labour

Having already had 2 children, I was under the misapprehension that labour got easier & quicker. BIG misapprehension! Our first born took 9 hours, our second 13 hours and this one took 34 hours! I prided myself in not having any pain relief first time round, only gas and air second time, and was determined to deliver just as naturally third time round. With two successful water births under my hat, this was to be my third – or not!

1am Saturday morning, I awoke with those all too familiar twinges. I cat napped through the rest of the night, then threw myself into the riotous breakfast routine with the kids. Remembering that one is supposed to ‘help the labour along’, Mum & I togged the kids up & off we all went for a walk. Lunch came & went. Dinner came & went. Boredom came & stayed! Impatiently I rang the hospital at 8pm and was advised to come in. As it was my third pregnancy, the midwife was also under the misapprehension that this baby was going to pop out quickly!

By 4am Sunday morning we were exhausted, & frustrated by the lack of progress. I opted to have my waters broken. The result of this sent my contractions crashing through the pain barrier & my ability to cope with them deteriorated rapidly. I tried the water pool again, I tried gas & air, I ‘pulled myself together’ & gave myself a talking too – ‘I can do this, I can do this’.

I couldn’t. I was too tired. I was lifeless. Reluctantly I asked for an epidural.

What a superb idea this was, because by 7am I was a different person. Despite the lack of sleep, I was positively comfy watching my body deal with each contraction – painlessly & effortlessly! It was my poor husband who looked completely pooped, propped up in the corner of the delivery suite, with matchsticks propping open each eyelid!

Shortly after this, two white coated Doctors arrived, & told me that I had half an hour to push this baby out, or else a selection of various apparatus would be used to ‘do’ the extracting for me. Absolutely-not-no-way-ever-not-on your-nelly!! This baby was coming out now……….P-U-S-H!!!!

The Diagnosis

Our little boy arrived within that half an hour, good apgar scores, good colour & feeding straight away. We were bowled over with love, delighted, amazed, relieved. We felt very proud.

After a period of recovery, my husband left us to go back home for some essentials, this was when I noticed my boy had Downs.

About five hours after Louie was born, I looked at his profile & thought, ‘I know that look’.

I hugged my boy closely & told him it didn’t matter. I told him I loved him very much. I told him he was all mine. I didn’t cry, there was no emotion, It didn’t matter. Louie was my boy. Childishly, I was feeling cocky that ‘I’ was the one to have picked up on this, none of the professionals.

I mentioned to the midwife that Louie had a ‘Downs’ look about him and she kindly brushed it off. Ten minutes later two Doctors arrived, followed by my husband returning from home. The midwife re-assured my husband that the Doctors were just ‘following up’ my comment regarding Downs. I looked at my husband, he looked at me. I could already see apprehension in his eyes. The Doctor confirmed that there were some ‘soft markers’ to indicate Downs, but that she couldn’t be 100% sure. A blood test would need to be taken.

The Doctors went away & my husband & I were left alone with our little Louie.

It was at this point the emotions started to set in. The most prominent one at that time was a deep, deep sorrow.

The next Few Weeks

A whirl wind of hospital appointments - blood tests - heart checks - thyroid checks – consultants – counselors – paperwork - phone calls. Our emotions where volatile, dark, heavy, lost. Our family became dysfunctional. Our children knew something wasn’t quite right. Family & friends were lost for words.

We were all grieving. Grieving for a baby we didn’t have, grieving for this beautiful baby we did, grieving for what we had lost, and for what we never had. We were grieving for each other. Our hearts ached with sorrow. What had we done? This innocent, perfect little baby, what had we done to him? Why couldn’t we fix it? Why couldn’t we take it away? Why couldn’t we throw money at the problem? Why couldn’t an operation remove it? Why us? Why our boy?

We felt suffocated by this immense darkness that enveloped us. A dark tunnel, no light to the front, no light to the back, we couldn’t move, couldn’t think. All I could do was cry. There was a chink of light in this tunnel, a door, an option, a way out – adoption?

There was never any way we could ever have given our Louie up for adoption. But right then, at that time, we needed to know that there was a door that we could open if we needed……………

Week 6 of Our Boy Louie’s life.

We were told that we would soon accept that Louie had Downs Syndrome, and would be able to move on with life. However, during those first 5 weeks this didn’t seem believable. But sure enough, as fast as those emotions had arrived, they left even faster. Each day allowed us to ‘process’ another feeling, to work it through. Each day bought some answers, but also bought some questions. We had good days, we had bad days. We took two steps forward, we fell one back. But each day we got stronger and stronger. It was as though we had to go through this. It was a test of our love – both for our boy, and for each other.

From the 6^th week of Louie’s life, the cloud lifted, a rainbow appeared, the sun shone, and we smiled – and so did Louie – his first little grin started to curl up at each side of his perfect little mouth – ‘Our Gummy Smiles’.

Our Challenge

So, our boy has Downs. So what? He may look a little bit different, he may take a little bit longer to learn new things. But he is still a person. He is still a boy. He will still grow into a fine young man. He still has a future & a life. Take off the label, see our baby, see our boy, watch him grow, watch him achieve. Watch Louie love & be loved.

His brother & sister adore him and are incredibly affectionate towards Louie. They know Louie has Downs & understand Louie will achieve at Louie’s pace. They have called the syndrome ‘Little’ syndrome.

We may have to deal with various issues throughout Louie’s life – health, society, education, communication, employment, accommodation – but isn’t that the same of any child?

We will work hard with Louie, together as a family. We will support, encourage, learn new skills ourselves, walk down different roads & make many new friends. Sometimes the roads will be easy to walk, sometimes it will be like trying to run on sand. But we will get there, we can do this, we will do this…………..and then some.

Louie’s Progress – 4 Months Old

So far we have been very lucky with Louie’s health. A slight heart murmur, but nothing the Doctors are worried about. This should mend itself over the next few months.

Louie’s muscle tone seems fine. At 4 months he can lift and hold his head for long periods of time whilst laying on his tummy. He supports his head perfectly while being carried in an upright position. He can sit up while supported by his hands and lift his head to make eye contact. He can stand, putting all his weight on his legs, whilst only being supported so not to topple over. In fact his leg strength seems more developed than his brother or sister’s at 4 months! And he’ll happily stand like this for minutes at a time, whilst cooing & smiling – a sort of ‘look at me’ expression!

Louie can go between one and a half to two and a half hours between naps, and sleeps a 10 hour stretch at night. He is a very contented, peaceful baby, who only starts to cry when tired. In fact his brother & sister cry more than Louie! (They are at that love/hate each other stage!)

Louie responds well to sounds & will follow a toy with his eyes, in a complete circle. He adores his daily bath before bedtime – definitely a fish in disguise!

I work Louie hard with twice daily (at least) sets of exercises. These help develop & strengthen his muscles and explore all his senses, whilst allowing fun one to one time with me. That is until his brother & sister come to join in too!

I’m learning numerous Makaton signs (sign language) just in case Louie’s ability to communicate is hindered in any way. Our other 2 cherubs have also latched on to a number of these signs, which creates a great opportunity to break through the noise barrier to get myself ‘heard’! In fact we are very impressed with how well they have picked up some signs.

Of course Louie is too young to fully understand the signs yet, but he watches with interest as I go through a few hand actions at the appropriate time – bath time, toilet, drink, play time, clever boy, good boy, to sleep, more, etc.

Louie’s had a few colds and an eye infection, but so far nothing too untoward. Fingers being kept very crossed.

I’ll keep you all posted as our lovely boy develops.

Mummy 18^th January 2008

Daddy's Story 2

I say the dream fell apart but maybe I should say the dream changed.

We were in a state of shock, probably like all parents that get news like this are. This wasn't happening to us. There must be some mistake.

We were given the lifeline of more tests but we knew already. We started to see the signs but hoped we were mistaken.

That's all history now. We had to decide how to deal with the cards life had dealt us and we started to think of the future.

Adoption...

We spoke to the social services and looked at the options. Could we bring up a 'disabled' child in a family with 2 other children? What pressures would it put on our marriage? What about OUR dreams?

Finally we decided there was no way we could let OUR boy be brought up by strangers. He was our child, God given, and we would look after him. How right a decision that seems now.

He is our Gummy, our responsibility, our child.

We have challenges to face and maybe we are still in denial about what the future holds. But we will face it together, as a family. To hell with the rest of world!

Daddy's Story

Louie was born September 2007 into a family that already included a 2 year and a 3 year old. Both of whom seem to spend most of their days trying to kill each other!

He was to be our 3rd perfect child and would complete our little family. My wife and I had always wanted several children and 3 was the number we would be happy with with. And we are.

But things didn't quite go to plan. Early on we had concerns about the risks. Tests suggested there was a high chance of DS but we simply chose to ignore them, got more tests done which indicated otherwise, and believed the results we wanted.

Seven months later Louie was born, early and after a long labour for my wife. I saw nothing, except another baby in the family. My wife now says she had concerns from the beginning but I was too tired to see anything.

I went home for some sleep, oblivious, and told all the family about the beautiful addition to the family. It was when I returned to the hospital a few hours later that the dream fell apart.

Why?

I'm not sure why. Maybe it will help me, maybe it will help others. I just feel that if I share my feelings with others, feelings of love, feelings of joy, of disappointment, of worry and of pride, then I may gain strength.

Even if not, at least I might show that all children, regardless of the challenges they face, have potential and should not be labeled.

But most of all it is about my son. My beautiful boy that I almost gave up on and who shames me every time he smiles at me.