A few weeks ago E shared his heart with a plea. So many of you either could relate to his words or cheered him on with the encouragement that change is hopeful. We are so grateful!

This month, March 21st, is World Down Syndrome Day. So raising awareness and changing perspectives are fresh in our minds.

We have been blessed to have a couple of days recently that help us to keep running this race and to know we are not alone. Days that are a lot sweeter than usual. In fact days that are celebratory cartwheel worthy!

We met with the main medical and educational professionals who oversee Arran within his Educational and Health Care Plan (EHCP).

Let me tell you that all the days of fighting hard for Arran to be given support for his needs, to be accepted, days of praying for individuals, some in the church and society, to be captured to want to invest into our boy and so many like him.

That all the sleep deprived nights and the coffee fuelled days, because Arran is full of colds therefore can’t breath well, or gets up many times in need of assurance that we are there due to the unpredictable stays in hospital and spending hours away from us at school.

Days of observing looks and whispers- please come and ask us questions instead…

Days of working hard to make this world be a home for our boy and so many others that don’t fit into a box. Really though, how many do? More than you know just manage to fake it or learn to comply.

ALL of this, every bit of it is worth the joy that literally overwhelms as it pours out when we sit in a room and hear all that is being done. The “rules” that are being broken, the thinking outside the box, the stopping and breathing and “how do we make this work?” rather than “we can’t”. All the enthusiasm as individuals who have taken the time to really get to know this little man of ours and spill over with glee at him and with this community that he has been enveloped into. All who can see clearly that he is clever and bright and caring and sensitive and funny. All who sit beside him and belly laugh with him.

ALL the cheering him on and the believing he can do, even if it takes so much longer.

ALL the smiles and love and open arms with open hands to learn with him.

You are the ones who blow us away and leave us standing in awe.

Then today we sat in a school assembly and watched every reception aged child speak out with confidence and delight.

And right there in the thick of it was Arran. Bold, brave, self assured. He took a glance towards us, then out to everyone else as he paused and was allowed time for his mind and mouth to catch up with each other. His face determined the lyrics “I’m not afraid to be seen, I make no apologies, this is me”. Cheesy? Maybe, I don’t care. It really did spill out from him.

Then clearly and courageously he delivered his scripted given words brilliantly!

And we are undone!

Arran knows this is a place of safety, acceptance, of love. And so he thrives.

To all who are Arran’s cheerleaders. To all who work so hard at ensuring his place at the table and making sure he has every opportunity to taste and experience the banquet of life.

That includes also those of you outside of this setting, far and wide who are woven by heaven’s thread into Arran’s close knit community.

Thank you thank you thank you and a thousand times thank you.

You are God’s grace over us to show us that even on the toughest days when living life with additional needs is so heartbreakingly hard, our boy is beautiful and valuable and his worth is seen and fought for by those beyond us his immediate family.

We celebrate him, we celebrate you.

And this we treasure in our hearts and will pull strength from on those just a little tougher than usual days.

This world keeps turning. It stops for no one. Time keeps ticking. Always speeding forward.I’m not sure if it moves oblivious to what fills it or if it just doesn’t care.

Today we said goodbye. Tears spilled over and down our cheeks. Our hearts swelled and squeezed tight at the bottom of our throats.

I stood and watched this man I know. He’s quite a little man really, and yet today he seemed twelve feet tall as he elegantly composed his final goodbyes to his love of thirty years wife.

A grown up son and daughter stood next to him with lost spaced looks upon their faces. The moments were alien to them. A new reality an unknown enemy. Where had the old reality gone, the one that was a friend back in time when they were cradled in their mother’s arms.

They spoke acceptingly of borrowed time and no regrets.

Yet I frowned with a silent cry to you God of this dreaded curse death. Of goodbyes that tear your heart right out of your chest. And I know you know Jesus of what I’m talking about because you stood facing a rock that hid a body and wept at how death stole your friend’s life right out of this life.

And why is time still moving so fast?

Did your thirty short years upon your creation go by in a blink of an eye?

Thirty short years of time that led you to the place where you hung upon a cross shaped tree that held you until your final breath left your compressed lungs.

But before that exhale you looked upon your mother with love overflowing and as a goodbye gift you gave her into the safekeeping of the friend you loved.

Were the goodbyes more torturous than the Roman torture you had bared? More torturous than the nail piercing chest crushing pain whose effects caused your body to remain hanging empty in time?

Despair Father could easily bed in with the tick tick tick. Hopelessness could shroud over us with every tock tock tock.

Yet, time also brought the third day and with it a sun rose, and with it The Son rose.

Time no longer in control. Death defeated, it has lost it’s sting. The ruler of death is now running destructively frantic, panic stricken because it’s now running out of time to a time, when time stops!

No ticks no tocks just the sound of a snapping crush of a serpent’s head.

Then time can not be the ruthless thief I think it is. Because time takes us to that moment. After the serpents choked out breath is extinguished so time will also exist no more.

What will exist?

A place outside of time where eternity dances. Where “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21:4 ESV

And so for now we lift our aching heads, we lift our heavy feet and walk with the ticks and the tocks. For we have a hope. A hope now that you Father are with us and nothing happens outside of your care. That you Immanuel is enough.

A hope for when I will say,

“My beloved spoke and said to me,

   “Arise, my darling,

   my beautiful one, come with me.

See! The winter is past;

   the rains are over and gone.

Flowers appear on the earth;

   the season of singing has come,

the cooing of doves

   is heard in our land.

The fig tree forms its early fruit;

   the blossoming vines spread their fragrance.

Arise, come, my darling;

   my beautiful one, come with me.”

Song of Songs 2:10-13

In that land of singing, beauty, love and freedom, goodbyes will be unheard of. With you our fragrant Beloved, we will forever be.

I sat today with my littlest man at the hospital. I am told he will need to wear glasses.

My heart sinks and I want to hold him close and shed some tears.

I have no idea why.

His eyes are not bad, they just need a little help.

They may correct themselves over the next five years but even if they don’t it’s really no big deal. Afterall so many wear glasses. One of my other boys wears them, when he can be bothered that is. Myself and my husband wear them.

Totally no big deal!

So why do I want to cry?

My thinking can only be that for Arran life has never been a flat race. His extra chromosome means he’s running the steeplechase, and we’re running it as best we can alongside him, having no training. Oh, but his stamina is way beyond ours. Five years sleep deprived…more coffee?

I guess I want some things in life to be easy for him. Yet we do not want him to be anyone or anything other than who he is. I know, we feel like we never make any sense either.

The world Arran brought into our life is an upside down world where so much of what we believed to be true, he has made it untrue. He has revealed a different way. He spins us around and there is no way of then walking along the straight ruled lines the typical world has made for itself.

So we learn to hurdle barriers and run through water. Manoeuvre in and out of lanes.

We also learn not to try and keep up with those ahead or who overtake. As much as we look ahead to the finish line, we look around us and behind for others whose DNA also rejected a stop watch, and we run with them too.

So the moment of sadness passes quickly enough. And I remember to give thanks for the glasses that will help my boy in so many different ways. For the optometrist who has been given the skills to know how to help.

For the joy in the broken that encourages us to live a different way.

For knowing that Arran’s upside down world is part of a greater Kingdom not of this typical world, whose ruler sings over us as we learn to embrace and change, as we learn to wear heaven glasses and see differently. Lenses that Arran seems to have inherited more naturally from his Father than me.

Suddenly I’m feeling no sadness. Just a giant high hurdle and a pool deep of thankful joy.

Wait up Arran! I’m getting back on the track with you.

1 Samuel 16:7 ESV

But the Lord said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks at the heart.”

The Christmas season is upon us. Trees with twinkling lights are appearing in windows of homes. Party tunes airing on the radio. Advent chocolate disappearing by the day. And I’m hoping my cold will be gone in time for the carol service so that I can be in fine voice to sing to Immanuel.

Anya asked me the other day, “ Mummy if you could have anything for Christmas what would be the best present ever?” I thought for a moment and said the obvious, “I would like Jesus to come back now.” I then thought further and said “I would like God to finally make clear the direction He is leading us in for the near future.” This was among thoughts of next years holiday being payed for that we impulsively booked that’s a little beyond our means, for clothes and books and a year’s monthly subscription for massages…. I’m clearly quite materialistic!

Today though I was given the best present that I didn’t know I wanted. I clarify, I knew it was very important to me but I didn’t know it could be a gift and such an amazing one at that.

Ian and I find ourselves fighting more and more for Arran to be included. To have friends. To be seen not just for his cuteness and “oh isn’t he doing well!” But to be drawn in and lifted onto the fairground ride of childhood. To be accepted among his peers. To be accepted by their parents. For him to not be the one who always has to figure out the rules and skills to be fully apart of the game, the conversation, the work, the team, the fun. But for others to cherish him and see him important enough for them to bend the rules and develop new skills to socialise and to communicate with him. After all who doesn’t want their child to never be invited on playdates or to birthday parties?

Yes, Arran has delays in his vocal language, in his fine motor skills, speed and stamina. Arran deserves medal after medal in how hard he has to work every day in these areas to make progress. Especially in the winter when immune system struggles and sleep becomes rare. The key word though is delay! He may be slow in learning in these areas, but the word is delay! Slow! He will get there but he is a tortoise not a hare. It cuts us that people don’t want to hold his hand along the way.

In not walking with him they miss where he already is advanced. His sensitivity to feelings of others and his concern for them which he is bold in offering. His eagerness to forgive and move on teaches me humility I never knew.  His ability to quickly apologise and laugh and at his silly stroppiness, to laugh at himself and easily let go of what’s not important, again I am humbled. And no matter how he is treated by others whether intentionally or not, he still loves the world.

His motivation and strength to keep going at everything. He amazes us as a family and inspires us. It is astonishing how much more of life you experience and the joy you are filled with when you journey with a tortoise.

So when we see him left out, rejected, thought of as unable or too able, when we see him stood on the sidelines looking longingly on, our hearts break. As he models to us though so we too soldier on, we keep fighting. Not to change who God created Arran to be but to change perspectives and environments around him no matter how hard, draining and heart breaking it is.

So what is the gift? This morning we went to watch Arran in his pre-school nativity. There I fought back the tears and beamed not only at my son who sang some words dressed up as a shepherd oh so proudly, but at the amazing staff who had taught all the children the Makaton signs to the songs. At the children who stood alongside Arran joyfully signing and smiling with him and to him as he signs confidently. They were all there, together, friends, a team. And Arran knew it and loved it and was 100% a part of it.

It was a taste of heaven. A gift made into a 1000 gifts. It was like seeing the smile of Jesus right in front of me.

I will enjoy unwrapping my gifts on Christmas day but I’ve received the best gift early, unexpectedly & very gratefully already this year. Thank you Arran.

Thank you pre-school children & staff.

Thank you Jesus. It may be your birthday, Jesus but you always give out the BEST gifts.

Genesis 1:26-31 ESV

26 Then God said, “Let us make man in our image, after our likeness. And let them have dominion over the fish of the sea and over the birds of the heavens and over the livestock and over all the earth and over every creeping thing that creeps on the earth.”

27 So God created man in his own image,
In the image of God he created him;
Male and female he created them.

28 And God blessed them. And God said to them, “Be fruitful and multiply and fill the earth and subdue it, and have dominion over the fish of the sea and over the birds of the heavens and over every living thing that moves on the earth. 29 And God said, “Behold, I have given you every plant yielding seed that is on the face of the earth, and every tree with seed in its fruit. You shall have them for food. 30 And to every beast of the earth and to every bird of the heavens and to everything that creeps on the earth, everything that has breath of life, I have given every green plant for food.” And it was so. 31 And God saw everything that he had made, and behold, it was very good. And there was Evening and there was morning, the sixth day.

Wow!

Between writing my last post and starting this one I was taken to these verses of God’s Word.
Do you see how God created us in His own image, in His image He created us? Do you see how He gave all that belongs to this earth under our dominion, to have sovereignty over them? To care for them.
When we allow God to be sovereign we need no other ruler and we care for the world how He intended us to.

But notice that He didn’t create us to have dominion over each other. But that we were to work, care and love together, unified, in communal peace. As indeed the triune God is unified and in communal peace. Always the model for us to follow.

My time in Rukungiri, Uganda introduced me to meet people who strive for this every day. Not just because it’s a nice way to live but because the alternative is too much of a reality.

Let me introduce you to some souls who work at God’s side bringing hope, bringing light into the darkness of others, by living, working and loving together.

Mothers Union- I met two women who head up staff to care for and teach teenage girls. These girls have dropped out of school due to not keeping up academically or have become pregnant, among other reasons. The MU board girls at their school and teach them sewing, weaving, hairdressing, jewelry making, cooking and how to keep a home. Once graduated the majority of girls go on to get a job or marry and care for their family well. They now have a future and know they have worth.

Mission for Water- I met a lady who, with her team travel all around Uganda digging maintained wells, providing constant clean water for the local community. Members of the community are taught basic skills of how to maintain the wells and keep them functioning to a good standard. However the team can also be contacted if the wells need more advanced maintenance. The team consist of a group of men, mainly orphans, who are trained or training in engineering. This project allows communities to share together healthy water and keeps girls safe as they are no longer at risk collecting water from areas that put them in danger of boys and men who take advantage of their vulnerable location. The project provides work, homes, training and family to men who otherwise may have no one and no future prospects. Again that feeling of worth that only love can give.

Chilli Children Project- Here I met a woman and her team who run a clinic for children up to the age of 18 with disabilities and orphans. There are many children brought to the clinic with Down’s Syndrome, Spina Bifida, Clubfoot and Scoliosis amongst other conditions. There are also many children with these conditions that are hidden away in the neighbouring villages. The team travel into the villages and seek out these children to offer them help. Some families are ready and grateful, some reluctant and some even refuse the help.
How the project works for the families who welcome the support is, they agree to grow chillies. Simple huh? These are harvested twice a year and exported out of the country. This is done with ease as most Ugandans don’t like spicy food. The clinic then receive the profit of the chillis to fund the medical care that the children need. I met many chilli children; what a blessed experience. Knowing the wonders and the heartache of having a child with special needs, for me to see children, who otherwise most probably would have simply existed in a corner of a room day in day out in their own filth for their entire life, now instead surrounded by love and care and laughter, was a grace beyond measure. Families living in despair for their children, now living with joy and gratitude, part of a community of support they never thought they would have. A togetherness of hope!

Mosaic Vision Ministries- Here’s the one that really got right into the flowing blood of my veins. Again, another woman (there are men on these teams honestly) heading up a team, who go into the villages where orphaned children hide away in the dark corners. Children who are not even into double numbers themselves yet, often are overseeing the care, the lives of younger siblings.
The team find them or are told about them and set to work rehoming them. Sometimes the children are able to live with their grandmothers or aunts. Sometimes widows in the area open up their homes and love and care for the children. I met a grandmother who had been left with 10 grandchildren. Both she and the children were amazing and my throat and heart spasm every time I think of them.
The heart of this ministry explodes with hard work and dedication to ensure new life, new hope, new love is poured out over little faces to lead their little hands into a life and a family they had lost and thought they would never have again. Yet now wonderfully they can just be children again, loved and cherished.

Mission Direct- I met a man. A what you say! Haha yes a man. It was he who introduced me to all these women, all these children. He answered all my many many questions and I saw how his heart fractured at the stories of these precious beings and yet seemed whole as he worked every day alongside them helping and encouraging others to do the same. He runs programmes for teams of people like me to show us the need, the heartache and the darkness but also the conquering hope and the beauty of communal love. He encouraged boldness and led us on a Bible distribution walk amongst the villages. The Bibles had been translated into Runyankole, the local language, and as we placed the Bibles into their hands hearts and faces cried with joy and hands were raised with voices calling out, Mukama asiimwe, praise God! Some faces simply beamed. We know not all can read, but for those who can we know they will read to others.
He also leads building projects. While I was there our team helped build an extra dormitory for children with additional needs that attend a village primary school. It is the only school of this kind in Uganda outside of Kampala and has only come to be through financial contribution and the hard work of Mission Direct teams alongside local builders. By the end of this year when the project ends after five years in production, twenty five children will join the twenty five already there and will be able to receive an education. A dream come true.

A new project begins next year to build a rehabilitation centre at the Chilli Children Clinic.

All have been an inspiration to me and I know I have gained so much more than I Have given. My heart broke many times as I walked amongst these people but also was made whole over and over. Isn’t that the beauty of pain though? That it shapes to become more how we were meant to be, which makes us whole.

Not one of these projects can exist or be successful without numbers of people working united alongside each other for a common cause, changing lives for a better future, a better now. Living practical love into the core of others needs, chasing out the darkness in their depths and filling them up with a rescuer of light to overflowing.

Not one of these children or their families can succeed in coping alone. Believe me, I have seen the look and tears on their faces as they are overwhelmed with gratitude and relief that they are not alone anymore.

Nor can any of these people experience change without the the help of those more financially privileged. As we receive the gifts gained of living in the western world so we become part of the communion of the world in passing on gifts.

Not one of us gains fullness of life on our own.

Community. Unity. Building lives together for the common good. Joy, peace, love, life to the full.

What or should I say who unites these souls and grows all these fruits? The God of compassion, the God of comfort, God creator of all beings gives us His Spirit to move us to battle challenges and bring victory to those He loves. He smiles rejoicing as He watches hearts around the world rejecting dominion over each other for selfish comfort and gain and instead choosing to join as one bringing equality of worth through improving quality of every person’s life. All under the fountain of grace, a gift of fullness, to share in the life and love of the fountain of goodness. As Jesus brought freedom and communion with those He walked the earth with over 2000 years ago, revealing the love of the Father, so we can be courageous and start living as we were created, in His image, revealing Him to others through being united in freedom and communion together now.

Then what else could anyone say other than, “And behold, it is very good”

Please feel free to get in touch if you would like to be apart of this family, this community by donation of time or money or prayers.

I sat in the cafe, just me at my table with my coffee and pretty frosted vanilla cupcake and my good Christian book in hand. I had read and reread the same paragraph over. I was distracted by the clanging noise of a loud gong at the table next to me. I recognised this sound that came above the general chatter because I make that same irritatingly ugly sound so often myself.

A woman was sat opposite her man at 9.15am. I sit and sneer because of my fear, at the worldly beauty view of fake tan, figure revealing clothes, hair and makeup done, looking ready for a night out rather than toast and eggs at breakfast. The groan of her tongue as she spoke with tones of annoyance and judgments on others were anything but beautiful.

I may be in my plain, no skin showing clothes with shower wet hair and a naked face, but I’m sat very well clothed in my self-righteousness of judgment, making that droning clanging noise. Mine though was quietly in my head, hidden in my heart unknown to others while I try to pose an air of holiness. Happy in it’s stench my own annoyance and disapproval made me stand up and leave to find somewhere more quiet and refined to read.

I though should have known better. I should have been different.
I know to trust in His quiet words of grace than to give in to the shouts of the struggles of my heart. I should be salt and light proclaiming freedom that beams from my heart. Not binding the weight of chains around my fellow mankind who are created in His image, just so I can feel better about myself.

But you know? Although I fail this over one more time and one more time again, oh and again. More and more there is a Light, who through the fractures of my brokenness is shining the ugly into beauty, refining it into dignity and smiling Yahweh breaths of freedom that speaks His tender love into others hearts to show them a different way.

So lady in the cafe, I am sorry as I looked down on you, as I judged you through my insecurities that a woman against woman brings. You see, I know One whose love for me means my identity should be so secure that my heart should never feel the need to look at you as anything but a work of art being continually formed in the Author of life’s hands. I should have looked at you in hope that you may sense the truth of that yourself, so it will lead you to find a life of true beauty that’s eternal in Him. Instead of having you tripping over me and my issues. I should be clearing your path and cheering you on straight to Him.
I should have been different.

Later that day I saw another woman looking at me with the same tension I looked at you with. I made a different choice. I didn’t trust in things that could be seen but in things that are unseen. I took a risk and held her eye and smiled into the depths of it. His light touched her, her body released and she smiled back to me.

And because His grace never stops working miracles in me, that are not miracles at all to Him but as simple as a hand taking hold of another hand and leading the way, I am able to put aside me, so that there could only be the the light of Him. And there between her and I was peace and a glimmer of true beauty.

2 Corinthians 4
Spiritual Treasure in Clay Pots

4 God in his mercy has given us this work to do, and so we do not become discouraged. 2 We put aside all secret and shameful deeds; we do not act with deceit, nor do we falsify the word of God. In the full light of truth we live in God’s sight and try to commend ourselves to everyone’s good conscience. 3 For if the gospel we preach is hidden, it is hidden only from those who are being lost. 4 They do not believe, because their minds have been kept in the dark by the evil god of this world. He keeps them from seeing the light shining on them, the light that comes from the Good News about the glory of Christ, who is the exact likeness of God. 5 For it is not ourselves that we preach; we preach Jesus Christ as Lord, and ourselves as your servants for Jesus’ sake. 6 The God who said, “Out of darkness the light shall shine!” is the same God who made his light shine in our hearts, to bring us the knowledge of God’s glory shining in the face of Christ.

7 Yet we who have this spiritual treasure are like common clay pots, in order to show that the supreme power belongs to God, not to us. 8 We are often troubled, but not crushed; sometimes in doubt, but never in despair; 9 there are many enemies, but we are never without a friend; and though badly hurt at times, we are not destroyed. 10 At all times we carry in our mortal bodies the death of Jesus, so that his life also may be seen in our bodies. 11 Throughout our lives we are always in danger of death for Jesus’ sake, in order that his life may be seen in this mortal body of ours. 12 This means that death is at work in us, but life is at work in you.

13 The scripture says, “I spoke because I believed.” In the same spirit of faith we also speak because we believe. 14 We know that God, who raised the Lord Jesus to life, will also raise us up with Jesus and take us, together with you, into his presence. 15 All this is for your sake; and as God’s grace reaches more and more people, they will offer to the glory of God more prayers of thanksgiving.

Living by Faith

16 For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. 17 And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. 18 For we fix our attention, not on things that are seen, but on things that are unseen. What can be seen lasts only for a time, but what cannot be seen lasts forever.