When reality hits

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I worry for the future. What parent doesn’t?

I booked my kids first ever proper birthday party today. A small affair in terms of what the play centre are used to but a massive leap for us. I used to worry that my children would never have a birthday party, or even understand what birthdays are. Now I am worried none of the children we invite will come. Will my twins notice? One of them might but the other still has no idea what parties or presents or cards are all about.

That worries me. He will be 6 in a few weeks time.

It worries me that he is still in nappies. It worries me that he still has no speech. It worries me that he still can not dress himself, comb his hair, respond to his name, read, write, jump, paint, wash himself, ride a scooter or a bike, understand instructions or use cutlery…all skills other children his age take for granted.

The lady booking the party asked me what 4 things the children would like to eat at their party. She gave us a choice. I asked one of my children and as I looked at the other one a silent tear ran down my cheek. It was unexpected. It was out of character. I try not to cry in public. But at that very moment reality hit me: my son is almost 6 and I can’t even so much as ask him what he would like to eat! He never even came when I called him.

I shouldn’t be with them in a soft play centre; not today. Today is Sunday and on Sunday we go to church. What on earth was I doing on my own with 5 year old twins, nappy bag still in hand, in a soft play centre on a Sunday morning? This wasn’t how it was supposed to be. They should be in Sunday school hearing stories from the Bible, making crafts for me to treasure for years to come and singing choruses. I should be listening to inspirational teaching, having fellowship with friends and worshipping God.

The reality is I just could not face it today. In soft play (at least as quiet as it is on a sunny Sunday morning not long after it opens) we are ‘normal’. The changing rooms are through the same door as the toilets so no-one has to know I am still going to the ‘baby room’ with children more than half my height. As my son buries himself in the ball pool no-one sees that he is licking them all and flicking them in the air to see the shadows they make as they fall back down. The noise of other children playing and the music drown out his squeaks and squeals and the noise of him flapping his arms against his chest. Lots of kids take off their socks even when they are not supposed to so he sort of gets away with that too.

But once we leave reality hits once again. I have to lift them both into their car seats. I have to strap them both in. I have to type the pass code into his iPad because he still has no concept of numbers or what to do. The entire way home (thankfully less than ten minutes) I hear just one word, and it isn’t from the lips of either of the children! Isaac has found an application with numbers that if you press them the name of the number is said…again…and again…and again. It could be animal names, names of people, letters, anything really. He just likes the sound. 2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2…….this is today’s ‘sound’. It may be tomorrow’s too. And for the rest of the week. Perhaps even the week after too. He has no concept of what it means, he isn’t going to repeat the sound or even start to write the number…it is just a noise repeated over and over and over…until you feel sick and want to throw that awful thing in the bin.

The reality is it is THE only thing that he will do for any length of time. And I mean even a few minutes. Other that eating it is the only time he sits still. So the iPad has to stay…2,2,2,2,2,2 included!

I worry what he will find to do tomorrow. I worry that one day there will be no red school jumper in his size for him to wear. I worry how I will continue to lift him in and out the bath, in and out of car seats and his buggy as he continues to grow and get heavier by the day. I worry that he might never ever speak. I worry how people will look after him. I worry I might one day be changing nappies on a teenager or grown man.

Right now I am wondering if he even cares about having a birthday party or if he would be happier alone in the play centre licking the balls and flapping his chest.

Then I smile knowing if nothing else he will love his chocolate birthday cake and whatever the meal is he will eat it like I haven’t fed him in the last 6 years.

Reality hits: I have a beautiful boy and he has made it this far. Whatever the future has we will get through it together. I booked him a birthday party today and there was a time I never thought that would happen.

That is the reality of life with disability: knowing there is still a long long way to go, but knowing you have come a long way too.

When reality hits.

My kid cried…let’s call a meeting

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Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.

The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.

Then there is church too. After almost six years attending crèche the tiimageme has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.

Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.

We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.

Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.

At times it really has felt like the second one of the children cried we would be having yet another meeting.

Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.

But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.

But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.

Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.

I might just mention that in the next meeting I go to…

The benefit of living with disability

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Disability can seems so negative at times: Professionals discuss what your child struggles with, doctors talk about what is ‘wrong’ and disability forms focus on all the things your child is not able to do. Education, health and social work see your child’s needs as ‘costly’ and therefore we have to fight for everything. Is it any wonder so many parents of disabled children struggle with depression and lack of enthusiasm?

I could easily join them. The lack of sleep, constant phone calls and paperwork and a diary full of meetings could steal the joy from me. The fact my almost 6 year old son has no speech and both him and his twin sister are still wearing nappies could have me begging my doctor for antidepressants. I could grieve for the children I dreamed of having. I could get bitter and angry at the injustice of it all. I could spend my days hiding from the world hoping all the children’s difficulties will disappear if no-one sees them.

But I can not go there. I have to keep my head above the water; for my sake and for my children’s sake. I am not writing this to make people think that disability is wonderful, nor am I writing this to make those who are struggling with the reality of life feel even worse. I am writing this for me: because I need to hear this everyday. On the days when I could run away, the days when my son screams endlessly and self harms, on the days when it seems we are getting nowhere fast. Even on those days there ARE positives. It is just harder to see them in the daily grind that is looking after children who require much more time and attention than others.

So here goes:

Benefit number 1: My heart is much more compassionate because I live with disability.
Not only is my heart more compassionate but so is my 5 year old daughter’s. She recently started school where two of the children in her class only speak Russian. There is no interpreter and naturally the children are struggling. Where other children are finding it challenging to understand the frustration and problems these children face my daughter has been a real friend to them holding their hand and sharing with them and communicating love without words. She struggles herself with severe anxiety and living with a non verbal brother she has had to understand the importance of non verbal communication so well. Her brother has taught her that love needs to words.
Before I had my children I thought I was a decent person. But there is something so humbling about facing a struggle yourself that opens your heart to others who are also struggling. Their struggle may be so different from yours but you understand that need for others to support you and help you. Living with disability opens your eyes to a non perfect world full of others struggling along too. And it opens a door into their lives because you can say ‘I understand’. And that is precious.

Benefit number 2: I appreciate life because I live with disability.
When you suddenly need health services and therapists, support workers and social workers, when someone else is willing to change your child’s soiled nappy for you; you learn true gratitude. Yes there are times when we have issues with professionals and we disagree on the best way forward. But the fact they are there to disagree with in the first place is such a blessing. My children could have been born into a country with little resources to support them and no suitable education available to meet their needs. Things may not be perfect but everyone who plays a role in my children’s lives suddenly becomes an angel to me. I appreciate feeling the wind and rain on my skin because there are families so much worse off than me for whom their disabled child is in hospital right now unable to feel that rain. I realise how blessed I am daily when I am in a world surrounded by children for whom every day is precious. Hearing of a child in my sons school getting ‘star of the week’ for simply opening his eyes is something that deeply affected me. Who am I to complain? I got to kiss my children good night tonight and that is precious.

Benefit number 3: I understand hope because I live with disability.
I used to think hope was dreaming of getting a well paid job and marrying someone tall, dark and handsome. Hope was looking for a better future and the positive feeling that things would always get better. But when you live with disability hope goes much deeper. Hope for me is seeing my son struggle daily to try and communicate without speech but still in the midst of that believing one day he will be able to say real understandable words. Hope was hearing doctors say they had no idea when my son would walk but buying him shoes to wear knowing one day he would have them on his feet when he walked in the garden. Hope right now is buying a t-shirt in his size in anticipation that one day soon he will want to wear something other than his beloved red school jumpers. Hope is never giving up. Hope is believing my children can achieve and stirring others into that confidence too. Hope is precious.

I could write so many more benefits. I could talk about all the amazing families I have met through being catapulted into the realm of disability. I could mention the charities who have supported me and how this has changed my entire outlook on giving to others. I could talk about how my circle of friends has increased greatly through having disabled children, hoe having disabled children has helped me be a better, more emotional writer. But these are all for another blog. And another day.

I just want you to know that even when things are so tough and real issues scream at you in the face daily, there is always hope. We can appreciate life and open our heart to others. My children are making me a better person. Even in their struggles there are so many benefits to living with disability. I just need to remind myself to keep on looking for them daily.

How did you meet me?

Did you meet me many years ago, a child innocent and free, more interested in dolls and card games than school, influenced by the beliefs of my parents more than the media, eating food that others made me without thinking of the cost or how it was cooked? Had you met me then you would have known a very different person to who I am now. The innocence of childhood is long gone now.

IMG_1323Did you meet me in high school, a teenager preoccupied with my puppy fat and how to avoid being bullied? When it felt like the weight of the world was on my shoulders as I struggled with French homework that made no sense and tried to remember the periodic table of elements. A time when friendship was someone to stand beside at break time, when my view of life became tainted by smokers in the school toilets and the pressure of exams made me cry. The confusion of my teenage years is long gone.

Did you meet me at university, a naive student who had yet to taste alcohol or party right through the night? The novelty of living alone soon forgotten when the loneliness and homesickness set in every night. When a determination first set in to achieve and my views of child development were rose tinted and way more fantasy than reality. When I let my world fall around me as the first person to ever call me a failure spoke into my life. Had you known me then you would have met an insecure and way too innocent student ill prepared for the reality of a full time career in teaching.

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 Did you meet me when I first fell in love, a believer in happy ever after, dreamer of happy families? When I consumed myself with wedding planning and being with my lover more than anything else because life suddenly seemed amazing, and bright and exciting again after the failure of university. Did you perhaps watch me walking down that aisle full of hope and love and a belief that together with my new husband life would be everything we wanted and more? It takes so much work to keep that spark, excitement and fire going. But the depth of love has not gone cold. I pray it never will.

Did you know me through those wilderness years of bitter disappointment, early pregnancy loss and grief of infertility, when darkness could overshadow me so suddenly I felt like I was being devoured? You may have met someone so negative at times, so consumed with their own pain it was difficult to see the hurt in others, someone so emotional and yet appearing cold in order to protect my heart from pain. Someone trained in child care yet avoiding anywhere children could be found. Someone who worked four and five jobs just to keep busy so as not to face the uncertainty of life. The pain of those years and the volume of tears may have subsided but the lessons learnt run deep inside my heart.

Did you meet me during the exhilaration and thrill of the birth of my babies when I wanted to scream my story out to the entire world and explode from happiness? Did you send me a card or buy a gift for my children? Or at some point on my journey shared with me as you bore children at the same time, experienced teething in your children as I did in mine or liked my children’s photos on social media? There is nothing more bonding for woman than sharing experiences of their children. I may have bored you with stories of their funny faces, silly antics and baby smiles. The beauty of those years will live long in my mind.

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Did you meet me through the agony and pain of realising my children where different, of never ending appointments and devastating diagnosis? Have you journeyed with me through autism, neurofibromatosis, vision impairment, faith, sleepless nights, developmental diagnosis and fighting the system? A mother so emotional yet determined, so overwhelmed yet so focused, needing to learn but struggling to cope. Have I poured out my heart to you in person or online craving that knowledge that someone somewhere cares and has been here before to show me the way? Have you seen me tell someone else it will ‘be OK’ and you wondered where or how I can find that confidence from?

My heart has been changed now. Compassion has taken over. Where there was once judgement there is now empathy for others. Where there was selfishness there is love. I am not the child, teenager, student, wife, or mother I used to be.

Life has a way of changing people. Disability has a way of changing people. Children have a way of changing people. Faith has a way of changing people.

Everyone’s journey is different. Forgive me if in the past I judged you, acted selfishly or was aloof towards you.

How did you meet me? You met me on my journey and my journey isn’t over yet. Bear with me as I keep on walking.

It has been lovely to walk with you for some of the way.

Thank you!

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They can’t just “get over it”

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My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. She has it for life. How it will affect her in the future is as yet unknown.
My son is non verbal: he can’t just ‘get over it’. He may be non verbal for the rest of his life. He may not be. We just don’t know.
He also has autism, visual impairment and learning difficulties. You don’t just ‘get over’ any of those either.
My children are both incontinent. Well, guess what, they won’t just ‘get over’ that overnight either!

It is hard to understand. I have hope because I need to have hope. But there is no magical cure. The future is uncertain and I have to live with that.

But one thing I do know is that my children are doing everything they can to make the best of their lives. So when they get upset or struggle or become overwhelmed it isn’t because they have given in, or because they are spoiled or want their own way, or because they want an easy life. It is because they have disabilities; disabilities that may be unseen but are very real. You may look at them and think they are fine. But they are not.

The world is confusing and loud and overwhelming for them. They rely on support networks that others don’t need as much. They see the world in black and white. They take things literally. They overgeneralise. They look at things from a completely different perspective. They have sensory overwhelmed from places that cause others no issues. They have anxiety to a scale many will never be able to imagine. They struggle with simple everyday tasks that we take for granted. Everything is an effort, a big deal, a massive achievement.

My daughter lost her comfort blanket and she was distraught. It was impossible for her to ‘get over it’. She had had the same cloth since she was a new born baby. No other cloth was good enough. Nothing else smelled, felt, looked or could offer her comfort like that cloth. Maybe all children have to grow up at some point. Life has disappointments. Special things get lost. But a child with autism can not ‘get over’ anything just like that. Her whole world turned upside down. Her sense of security and comfort disappeared. Her brain had to process that her cloth was no longer available. The depth of sadness this brought was tangible. It was found again but her faith and security in life remains uneasy. Something of paramount importance to her was lost and now she worries that something like that may one day happen again. That is a huge amount of stress for any 5 year old to carry around all day. She will never just ‘get over’ something like that. Her world changed. And I can never fix that for her.

My daughter is coming home from school in tears. She has a long list of things causing her distress. She isn’t just wanting her own way or demanding she is someone special. She can’t cope with noise or crowds or new unfamiliar routines. She is struggling to keep up with her peers and in the midst of sensory overwhelming in school she is finding listening to a teachers voice a real struggle. This is not made up stories. This is sensory processing difficulties. This is autism.

I took her in the front door of the school this week to avoid the playground. Another parent spoke to me when I came out. In her opinion I am spoiling my daughter. I am babying her. She just needs it get on with it like all the other children do. She just needs to ‘get over it’.

If only….

If only my kids could ‘just get over it’…

They may learn to cope better as they grow. But they will always have nf1, or autism, vision impairment and learning difficulties. The same way others have health conditions, mental health issues, struggle with bereavement or loneliness. Be patient with people. Have compassion. There are very few things in life people ‘just get over’. Most people are trying hard. I know my children are.

“Be completely humble and gentle; be patient, bearing with one another in love” Eph 4:2
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There is more than meets the eye

 

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It is the first day of the new school term here and my daughters first ever day at school. I took the standard parent ‘first day back’ photos and posted them on social media. The usual comments ‘they look so smart’ ‘good luck’ and ‘have a great day’ all touch my heart.

There is so much that has gone into today, way beyond the simple purchasing of new school wear, shoes, washing and ironing uniforms and packing bags. For weeks now I have had to prepare these children for this major change in routine, even though it was previously familiar to Isaac. Seven weeks is a long time in a child’s life to get used to going out with the family, eating lunch at home and playing with toys and technology.

So my autism mummy mode took over and prepared social stories for Naomi, visuals for Isaac and lots of walks to Naomi’s new school even though it was closed. Both of them have books all about their summer to take into school. And we have read about Topsy and Tim, Biff, Chip and Kipper and everyone else you can think of starting school!

Isaac has a photo album full of stories and photos to share with his teacher. He has no other way to share his experiences from the last two months as he can not speak. I sat with him for days going through all the photos we had on his Ipad and having him point to the ones he especially liked. Then I sent them off to get printed. There was no surprises that the majority featured food! But it is his story and if he was able to talk these are the things he would want to tell his new teacher about. As his teacher is brand new to the school and only knows about Isaac from information the school has (assuming this has been read), I so hope someone will sit with him and take a few minutes to allow him to share his summer with them. This is as much about transitioning from home as it is to school. We are all in this together.

Naomi’s new school had given the children a summer scrapbook to do at home. The pages were blank which immediately caused Naomi huge anxiety. She needed guidance and instruction and clear boundaries and pages that could contain ‘anything about your summer’ where far too vague. So I helped her structure her ideas and we had a lovely time together as she drew her family, stuck down photos of some things she enjoyed and cut pictures from magazines. Once again I hope someone takes the time to get to know my daughter and puts no pressure on her to speak if she can not yet overcome her anxiety to do so.

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We hit some very real challenges when we found out that transport arrangements for taking Isaac to school were all changing. I sighed. If only the ‘powers that be’ had any idea how change affects my babies. For the sake of saving pennies they change contracts and providers taking no account of the needs of the children. How would they feel to watch their child bite himself, bang his head and run back inside the house when he has to meet a new driver and escort and see a new taxi? I bet their heart would break like mine. But I swallow hard and do what we can. Take photos of the people, the taxi, and his school. But still we have the screaming and the self harming. And all I can do is pray; pray that he might one day understand, pray for patience for these new people in his life and pray for a way to help my baby understand. And then I realise our fatal mistake! We arranged for them to visit at dinner time! It really was that simple. We had been saying ‘see taxi’ and ‘new driver’ and ‘school taxi’ to him and in his mind he never gets in a taxi at that time of day and he certainly doesn’t go to school after his tea! So when it came to the day, the one you all see the photo of, off he went. Because that was right: first taxi, then school! And the promise of a school dinner had him flying right out the house. (was my cooking for the last seven weeks really THAT bad?) Can you tell any of the trauma we went through just from the photo?

There’s more than meets the eye.

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As I took Naomi to her school for the first day and finally left her in her classroom sitting at her desk with all the other children I had the same emotions as all the other parents there. What you don’t see is the fact she is the first child to go to that school who isn’t toilet trained. She is the only child in the room wearing a nappy. And she drank her milk that morning from a bottle too. But as all the other parents made their way out of the building a line of adults waited to talk to me. Then I suddenly realise there is more going on: An autism outreach worker, two classroom assistants, the class teacher and the new Head teacher too all waiting to introduce themselves. Though they were not in today there will also be speech and language therapist, occupational therapist and various other professionals involved too. Because I have pushed for as much support as I can get. She may be going to mainstream but she will jolly well be supported.

There will be meetings, reports and iep’s written up within weeks. There are still some unknowns but she went there today, and she held it together. And I am so proud of her for that.

This afternoon and tonight we will have the aftermath of the first school day. The stress doesn’t end for these children at the school gate. Autism, nf1 and developmental delays are 24-7. We will have it today, tomorrow and forever.

The photos are a great memory of one special day. Thank you for liking them, commenting and loving us.

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Please remember though that behind those photos there is more going on than meets the eye.

And that will be the same for so many families of special needs children too. 

They just sat there holding hands

The long summer holidays were coming to an end, it was getting ever closer to the children’s bedtimes and they were having a little time on technology while I tidied up. They were quiet so I turned around to check on them to see them engrossed in their own worlds but yet so closely bonded in each other’s worlds they were sitting holding hands. It was one of those moments you just had to be there. It was sweet, intimate and special. It was beautiful:

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They didn’t need words (which was perfect since one of them is yet to speak) and they didn’t need to look at each other (even better since they both have autism). A powerful image of two people connected against all odds. A moment of love.

I have had five years and nine months to look at their hands. I remember when their hands were so tiny they could curl round a single finger of mine. I remember holding their tiny hands in a gentle fist while I slipped their arms into little baby grows and cardigans. I remember holding their hands when they needed me to balance them as they took their first steps. I remember gripping their little hands as I showed them how to climb stairs, holding their hands as we walked in shops, climbed up hills or along paths. This week I will take one of those precious hands and hold it as I walk my daughter to school for the first time. Precious moments of love, guidance, bonding and closeness. I know one day she won’t want her mummy holding her hand but until that days comes I treasure that intimacy with her.

One of these little hands will learn to write soon. But while her brother may not do this for a long time to come it doesn’t stop them being close. Summer has brought them so much closer to each other. It has given them more shared experiences together and time in each other’s company. They prefer to be together. Education is separating them but love is joining them.

And while one of these little hands will turn pages in a book, paint pictures, thread beads and cut and stick things the other hand is still be used as an essential means of communicating. It is only in the last year that my son has leant to use his hand to point. I still dream that one day he may use his hand to blow me kisses, or wave, or stroke my face. But right now I rejoice he still uses his hand to take mine to what he wants.

Therapists want my son to take my hand less and use other means of communicating. While I see the advantage to this there is something so special about a little child leading you by the hand to show you what he wants. It connects you physically when there is no language. It tells me he loves me without any words leaving his mouth. And as he uses photos and pointing more I miss those moments when he sought me out, pulled at my hand and led me to what he wanted.

I may not always be around for these children, though I pray God sustains my years on earth for many years to come. But seeing them together, knowing that despite all their challenges they have a deep love for one another, that from the moment they were conceived they have been connected. Seeing my daughter put her hand over her brothers to teach him what to do in a new game, watching how she holds a straw in a glass of juice for him to help him have a drink, observing how she tenderly strokes his arm when he gets upset…I just know that they will always have a friend in each other.

I wanted to kiss them both, explain how special this moment was to them, talk to them about the significance of what they were doing… Instead I smiled at them and took a photograph… While they just sat there holding hands.image