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High Five to my Birthday Boy

Lumen

You are a handful, my beautiful Lumen, in demeanour and now in years. I celebrate you every single day, all 37 trillionish cells you are composed of, your spiral curls, your smile that your brother says is the greatest smile he has ever seen, your movements, your hands, your infectious laugh which we should bottle up and distribute as a health supplement, your autism, your eyes and all the realms they see, your silence, your affection, your dozens of food allergies, your sincerity, your way.

You are that dancer – and spinner and jumper and hand flapper – who observers might think is crazy because they are incapable of hearing the music you hear. You are teaching me to listen to those overtures, those concertos, those symphonies you receive, and the songs become ours. You are that untrained coryphée who emulates a Nureyev you’ve never seen perform, using the spotting technique during your own form of pirouettes. I’ve witnessed you astound many an onlooker with your ability to turn and turn and turn and never fall over or suffer from dizziness.

I celebrate all your melodies and harmonies. And certain strangers do, also – the ones that smile at you when you sing your songs as we have our adventures around town. You’ve had two amazing music therapists – one who made us realise that music may serve to open the door to communicating with others, and another who complimented you on your perfect pitch. I’m happy you have expanded your preferred musicians to now include your two current favourites, Oasis and Regina Spektor.

I celebrate you, my non-verbal son, who is just starting to use words in relative context, words you’ve chosen based on what you’ve heard and on your own interpretations, such as ‘Emergency’, ‘Nanny Plum’ (character from the cartoon ‘Ben & Holly’s Little Kingdom’), and your brother’s name ‘Enlai’ when you are in sticky, frustrating situations. When you have had enough of anything, including your mama chatting to a friend, you say ‘Bye’ repeatedly. Not so subtle, but kudos for getting your point across. When you said ‘tickle’ – a word I’ve uttered to you countless times while tickling you and your brother – as you giggled mischievously and pulled the blanket over your head while we were playing on the bed, I cried. When you told your sitter ‘I miss you’ and hugged her after not seeing her for a month, she and I both cried. When you walked out the door with her and said to me ‘Love you’, I cried uncontrollably. You’ve not said ‘tickle’, ‘I miss you’ or ‘Love you’ since, but you saying them and my hearing them exists.

I celebrate your silence, which has taught me more about myself and humanity than I could have imagined. It seems ironic that your ma has a degree in communications, used to read the dictionary for fun, and is a writer, and now spends most of her time with you, often in silence. It serves as a basis for comparison, and I now have an appreciation for the other end of the communication spectrum, namely the economy of language, the gesture, the picture symbols. You and your ma have a quiet dialect in common – after a traumatic event as a child, I went through a period of choosing not to speak. You, my sweet Lumen, remind me of the candour, the poetry, of the countless stories that exist when a space is silent. We just have to learn to fine tune our ears.

I celebrate your strength, your resilience. What you’ve been through and continue to be confronted with on a daily basis is not for the faint-hearted. Your therapy appointments, doctor and dentist appointments, hospital visits – of which we’ve had close to 200 over the last year – haven’t dampened your spirits. You may have broken several blood vessels in your face when you screamed as I and three doctors and nurses had to hold you down to administer medication, but the vessels healed, and you’re here. You showed both your exasperation and physical power when I, two phlebotomists, and a play therapist worked together to take your blood. Although we were both covered in sweat from the ordeal, the mission was accomplished, and we walked out of those hospital doors and straight to the park. I carried your 24 kg/52 lb body the entire mile walk because you needed me to. You communicated with me by applying your version of an affectionate chokehold, and I tried to sing to you ‘Hush Little Baby’ until you gave me a look like, ‘That’s all you got right now? Pretty unoriginal.’ So I opted for ‘Home on the Range’. When we reached the park, you ripped off your plaster in one go, threw it on the ground, and ran like the wind.

I celebrate the way you look in my eyes, and the way you wrap your arms around your brother’s waist and place your head on his chest. And the way you look up at him like you are the luckiest little brother in the universe. You are.

I celebrate your bath time. I think you’ve had more baths than any child your age. And the way you help me clean the walls, the floors, the counters, even the hallway leading to the bathroom, with your splashing, is much appreciated. I may shake my head and murmur some words when you decide to jump right back in the bath in a fit of laughter, after I’ve dried you off and put on your various prescribed lotions and potions, but secretly, I love your cheeky manner.

I celebrate your love of churches. You don’t seem to be fussed about the religion, but you do like an impressive altar and stained glass windows. I have watched your behaviour in many a church, and it always makes me wish I could know what you know. We recently visited Saint James’s Piccadilly, and you made your way to the altar of the empty church. You knelt for a long period, stood up, sang a melodic tune, and then twirled at least 20 times. As we were walking out, a couple sat in the back pew smiled at us. They said you were wonderful.

I celebrate your appreciation for public transport as being more than just a means to reach a destination. You aren’t a fan of waiting for buses, but when you step in one, you find a seat next to a window, and although I can’t know exactly what you see, the various scenes seem to make you content. And you like the escalators and tunnels in tube stations. You look at everyone and every poster, and you run your fingers along the textured walls. You sometimes touch the fabric of a fellow passenger’s clothing or bag, especially those with intricate patterns or floral prints, and I always hope it doesn’t upset them. When one woman didn’t welcome your touch, I explained to her that you were autistic and didn’t understand social niceties, such as not touching strangers just because you are attracted to their garb, and she said she didn’t care and that you should keep your hands to yourself. I thought of her face and her words for the rest of the day, wishing she did care. When you started to tug on the strap of one man’s rucksack who sat next to you on the train, I told him you were autistic, and he offered to take his rucksack off so you could touch all of it. At his stop, he said goodbye to us and wished us a lovely day.

I celebrate your love of Lego, buttons, plastic food, earbud tips, and fake jewellery. Except when you put them in your mouth. All day, every day. When I try to swap one of your many ‘chewies’, you usually throw it and look at me as if to say, “If I wanted to chew on that, it would be in my mouth right now instead of this button.” I even celebrate your stubbornness. Most of the time.

I celebrate your starting school this September. Although the battle to complete your Education, Health, and Care Plan is one for the books, there is only one school I wanted for you, and my Lumen, this is the school you will be going to. I’ve only met and spoken to the headteacher and your class teacher a few times, but I can tell you they are both incredible human beings. You have not even started school yet, and they have already gone to great lengths to prepare for your arrival, including asking staff to attend a session in which I discussed how I handle your 45+ food allergies. They have asked what cleaning products we use at home so they can ensure they use the same safe products at school. They have said that I can call the school as often as I like throughout the day to check on you. On your second trial day, you were running around the outdoor play area. I stood next to your class teacher, discussing some of your likes and dislikes, as I watched you jump on the hammock swing. I have pushed you countless times on similar swings throughout London, but there I was, witnessing you sitting there with nobody pushing you. I couldn’t stop crying, and your teacher consoled me, asking if I was crying because I thought you would have an anaphylactic reaction while at school. I told her that my fear was that you would wonder if anyone would ever push you on the swing. Or that you would not be happy.

You’ve shown such happiness in your short life, despite the many adversities in your path, and this is how I always want you to feel. I don’t want you to feel you need to conform to the ways of my world, or your brother’s world, or anyone else’s world. I want us to continue to learn more about your world – a delicate, extraordinary world.

Happy Birthday, my Lumen, my light. I am so fortunate to be your mother.

Category: Allergies, Autism, General, This Parenting Stuff

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4 Responses

  1. Arancha says:

    Happy birthday Lumen!!! What a beautiful letter Lisa. Loved reading it.

  2. Ileana says:

    Beautifully written! Happy Happy Birthday Lumes!!!

  3. Tina says:

    Happy Birthday Beautiful Lumen! I will never forget when you held my hand and we played, I was so touched, it was so very special. Lisha this is absolutely wonderful, your words brought tears to my eyes, you are an amazing mother. xx

  4. Marimena says:

    Dear Lumen,
    You are a lucky boy to have the mum you have.
    She made a huge difference in your life, I can see her smile reflected into yours every time I look at you.
    Happy birthday to you. I hope you do something special today.
    Lisha, thank you for sharing the most wonderful love declaration and most of all for opening our eyes to little aspects of life we would certainly miss otherwise. I hope my eyes will stay open for long, until the next. Your writing is a pleasure to read.
    Big hug

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