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“There have been many, many times, particularly soon after ‘D’ was diagnosed, when I’d love to have just been able to run away from it all” . 12 testimonies.
Have you ever felt like Nobi*, the mouse in The Lion King that Scar is holding up about to eat… “Life’s not fair, is it? You see, I… well, I shall never be King. And you… shall never see the light of another day…”
A while ago we had a really tough few days, with my disabled Mother-in-Law rushed into hospital following a nasty fall, my disabled son James being sick, even the curtain rail/curtains in our bedroom decided to pick that moment to fall crashing down! All while trying to juggle a particularly hectic work and home schedule… the worst possible timing.
However, like Nobi the mouse, we have lived to see the light of another day, and the sun is shining even through the challenges… James is much better, Mother-in-Law is on the mend, and the curtain rail and curtains are back up. What about you? Do you have stories of a day when it was all a bit overwhelming, when you silently (or audibly!) shouted “It’s not fair!” but survived to tell the tale and live to fight another day?
Well, I asked a few folk for their stories, and among those that follow are some that have seen the light at the end of the darkness, while in other cases the light has not arrived (yet!) Maybe you will see a little of yourself and your family in one of these stories, or maybe you will be encouraged that it’s not just you that has days like this…
We are not alone, we journey through the valleys and the mountaintops together.
“Last week of the summer holidays, having survived the whole of the summer, I decided to take both of my two out for the day. A nine-year-old wheelchair user and a one-year-old. Packed all the bags, tubes, medical kit. Hoisted ‘E’ into his chair and ready to load into the car. Went to put the one-year-old in the car….. no car seat….. in hubby’s car at his work… Cue mummy crying because she needed to get out of the house. We did successfully get out the next day!” Naomi
“Last week. I’m a positive person with a very positive outlook but this last week has made me tearful and fearful. It started with seeing a solicitor and the realisation that one day we will be dead, and our daughter will only have her brother to depend on and love her. I was also sad that having to secure a future when we die costs the earth and involves jumping through ‘mental capacity ‘ hoops. I cried solidly for days. Then our daughter had an appointment to check she doesn’t have arthritis (she doesn’t thankfully) but that appointment was at a different NHS Trust and we were told about all the tests she should have had but hasn’t, the therapies she should have had but hasn’t, and the blood results we had been told were fine but are, in fact, not. I’m heartbroken. It’s not fair. My daughter deserves better.” Gemma
“Some days just are hard. One that sticks in my mind is arriving home with my son as a baby to find my attic toilet pipe had burst and water was running through the entire house minus one room! Trying to juggle a starving baby, phone every plumber I could, and work out where my insurance details were. I wouldn’t have managed that day at all if my friend hadn’t come to the rescue and sat with the kids while I got the water stopped and insurance people out etc. But we deal with whatever is thrown at us and in the end the insurance paid for all new carpets and painting all the walls so it could have been worse. Just had to live in the front room for a couple of months.” Jade
“I am tired, crushingly, achingly bone tired,
As a mum, I have no choice, I keep going
I smile, chat, sing, clean up, wash up and tidy,
Inside I am crying, sobbing, pleading for a break, no longer glowing
I am a mum, sister, daughter, Oma and aunt
But I am Samantha, Sammy, Sam, I am me,
Inside I feel I am lost, does anyone really know me or even understand?
Does anybody really try to see?
I had dreams, I put them all on hold, to keep a precious baby with his kin,
I have endured comments of disgust all aimed at me,
Would I do it all again if asked of me?
I can’t say yes for sure, it’s hard, you see?
But I’ll carry on regardless, I will pray,
That my will to carry on will be my joy,
Can you see me in your life of day-to-day
I am Sam, I am determined, I will not be destroyed.” Sam
“A few years ago, the week between Christmas and New Year, I had my mum in the hospice really poorly, my dad in intensive care with double pneumonia and my husband walked out of his job. I was carer to both parents and trying to work full-time, but I just felt completely empty, nothing left for me, and completely alone. But we have such a gracious, faithfull, God who just kept me going and sent along a lovely Christian lady who saw past the “I am fine” and organised people to visit and care for mum and dad and took me out for a hot chocolate and just listened to ME and not about mum and dad or hubby but how I was. That was exactly what I needed just to recharge again and start over.” Louise
“I had not got through a Bishop’s Advisory Panel and decided to do an MA in Applied Theology instead. I failed my first assignment. I told my tutor that I was ready to totally give up on my life with Jesus. I was in the Lantern Cafe near Ringwood and they had a display of crystals. My eyes became fixated on a string of rainbow crystals and I was transported to the story of Noah’s Ark. When I went back to Scripture, the rainbow was a sign of the promise from God to his people that he would never cause such devastation again. I bought the string of crystals as a reminder and they hang in my bedroom. Whatever happens, God’s got me. I had hit the low point and it was going to get better. And it has. I have finished the taught part of the MA and I now work for the church!” Joanna
“There have been many, many times, particularly soon after ‘D’ was diagnosed, when I’d love to have just been able to run away from it all. To pretend that I’d never heard of MPS (MucoPolySaccharidosis). MPS hasn’t gone away, and I’m struggling with news about it this week again. But then the things that rescue me are little things that mean so much – hugs from my sister, a bunch of flowers sent from another MPS mum, the awesome Gemma checking up on me (see Gemma’s story, above), sunshine on my face, music, a (huge) big slice of chocolate cake.” Sally
“One day I decided to take my disabled dad and my then three-year-old son out for a pub lunch. The car park was on a slope. For some reason my dad thought I was holding the wheelchair when in fact I was searching for my keys in the car. He took off the wheelchair brake and went hurtling down the hill. By some miracle he didn’t hit anything and came to a stop towards the bottom after scraping along the wall of the car park. Luckily, he wasn’t hurt, just a little shaken. After lunch I took my dad, still a bit shaken, home and collected my six-year-old for a routine immunology appointment at the hospital. Taking both of my children with additional needs is like herding cats. Neither of them has a sense of direction or danger and they constantly distract each other. After the appointment, we had to go to another department for a blood test. My three-year-old had a screaming meltdown because he didn’t want to leave the Happyland toys he was playing with. It was more than a tantrum, this was a full-on purple-faced screaming fit and it took me and two nurses to calm him down. In the end, the nurses showed him their ‘magic drawer’ of toys and allowed him to choose one to take home. When we arrived home, my six-year-old was a mixture of totally hyper and absolutely exhausted as he processed his hospital experience. This manifested itself in him pushing, rolling on and shouting at his brother and I. As he was flinging himself around, he tripped and tumbled head-first down a flight of stairs in the garden. Thankfully he was fine apart from amassing a collection of cuts and bruises. Sometimes you get to the end of a bad day and think: “At least everyone’s still alive, well done me.” On this day I had to add “Well yes….just!”” Lizzie
“The day when after years of fighting to get a diagnosis for my ASD son, his multiple suicide attempts, self-harm, missing from home/school incidents, violence towards family members, of fighting for appropriate school support, placement and for social care to step up (especially given two younger children with complex medical needs) got too much. After staying up all night (again) to prevent my son succeeding in ending his life, I rang social care begging them for respite (again) because I couldn’t function and they trotted out the same old lines: “You can cope, you are coping, you can manage and no we won’t be helping today or, for that matter, do we know when/if because you ARE coping”…. and my depressed, anxious, sleep deprived brain made the connection that I was the lynch pin holding it all together… so if I wasn’t there any longer, then my family would get the help, support and respite we all desperately needed and I decided to ‘take myself out of the equation’ so to speak…. Obviously I’m still here, so that didn’t work out…. but at times…..?” Lisa
“I’ve lost two friends within two weeks of each other. One in Hertfordshire and another in Manchester. Life is mega hectic and poor hubby is exhausted from his schedule.” Trish
“Rachel Wilson talks in her book ‘The Life You Never Expected’ about “days of deep breaths” when one thing after anything goes wrong. She gives a brilliant example of a day like this and how it feels. I find it helpful professionally to label days as “days of deep breaths”, it seems to de-personalise them, avoiding apportioning blame and helps me to not get stuck in negativity or bitterness. It’s somehow helpful to think that some days with children with additional needs just require deep breaths, but they’re not everyday, and they won’t ultimately last forever.” Helen
“From January 2018 we had three-months of one crisis after another which started when my mum, who was in the last stages of dementia, had a fall, broke her wrist and had to have surgery and was hospitalised. She got moved to three different hospitals, had two nursing homes refuse to take her and the others we liked had waiting lists. In between this we were in the middle of getting self-directed support for my son who is autistic and has learning difficulties, so we had to write a budget and plan. We also received his secondary school placement and it wasn’t where we wanted so had to appeal. His primary school, which was an ASD school, never gave him the opportunity to go on a residential trip and tried to hide it from us by not telling us about it so we had to deal with this too. The final straw was when we lost the appeal for his school. It wasn’t a matter of “It’s not fair, God” but “God, give me a break!” My mum then died 10-weeks after her fall. What kept me going was each day I listened to two songs, “Songs in the night”, and Rend Collective “The joy of the Lord is my strength”. These helped me to focus. Our church was very practical and helped with people making us evening meals. This helped us to keep our son’s routine which in turn helped him cope with the change of circumstances with his Gran. Final thing was individuals who would send messages and just be there for me even though they didn’t fully understand all I was going through, but that didn’t matter. They listened and prayed for us. Looking back, I can’t believe that we actually got through that time, but God certainly is faithful and enabled us to do so.” Lesleyanne
A MIXTURE OF HEARTBREAK AND HOPE
Wow! So many amazing stories, with a mixture of heartbreak and hope, pain and perseverance, struggle and security… from dark valleys to sunlit mountaintops… And what seems to weave like a ribbon through many of these stories is faith; faith in ourselves, faith in other people that we can trust and who just “get it”, faith in God who understands our heartbreak, pain and struggle, and who is there for us in the midst of it.
‘God is our place of safety. He gives us strength. He is always there to help us in times of trouble. The earth may fall apart. The mountains may fall into the middle of the sea. But we will not be afraid. The waters of the sea may roar and foam. The mountains may shake when the waters rise. But we will not be afraid.’ Psalm 46:1-3
So, next time you are having one of those days (or weeks, or months, or even years!) remember that you are not the only one, you do not travel alone through this life, there are plenty of us that are having one of those days too and are there for you; and there is our great big God who has experienced all of the pain, struggle and loss that we have and longs for you to reach out to him and know his peace, his hope, his love…
Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.