When the burden is great and hope is so small
Often you don’t realise how weighed down with life you are until you are forced to talk about it. You thought you were a free-flowing river, rising and falling according to seasons, always moving forward, pushing the boundaries a little here and there but generally staying within what’s realistic, successfully sustaining your family and never drying up. Until one day you’re asked to describe what you’re dealing with and then it’s as if your eyes are open to the truth and you realise that you’re not a free-flowing river after all, you’re a rampaging flood. The banks had burst long ago and where you thought you were doing a great job at staying the course, in reality you’ve merely been holding back the water with sandbags, desperately trying to plug the gaps that keep appearing.
Life can be hard when you’re the parent of a neurodivergent. Add to that more than one child, with more than one dimension to them, it becomes much, much harder. And then chances are either you or your spouse is also ‘outside the norm’ and life can become nigh impossible!
The burden is great, the hope is so small.
Today I listened as a friend told me about her meeting with NDIS and how she burst into tears during it. It was not intentional, it was not planned, and it was certainly not expected. She is an ND parent with 3 ND children and realised how overwhelming life is for her and how she desperately – DESPERATELY – needs help. Life is a flood that cannot be stopped. What hope is there?
It caused me to reflect on our situation in Australia and our heavy reliance on a broken system called NDIS. The premise is good but the reality is deeply faulty. Where else can we turn to for help? Friends and family? But what if you don’t have any family close by or they cannot support you? What if your friends are so busy trying to fight the overwhelm in their own lives that it would be futile and even unfair to ask for help in that quarter? So then you pay people, pay for respite. But respite costs, and few are in a position to afford it. NDIS are certainly not willing to fund respite without a fight anymore – they see it as the parent’s responsibility to parent their child. They are right in thinking this, however what if the parent is struggling so much that can no longer parent as they should or could or would? What if 2 or 3 hours a week gives them time to fill a sandbag or two, to help get the river back on track?
Or perhaps the answer lies within ourselves, whereby it is up to the individual to force the water back within the boundaries of the riverbank? Let’s swap analogies. Let’s talk in terms of ‘emotional backpacks’. Each person carries around an emotional backpack full of their worries, responsibilities, trials, burdens, despair. Children are not exempt. Neurodivergents have backpacks already full to overflowing, so any extra packing material causes extra stress on the shoulders, the straps, the lining. There is only so much that can be crammed in there and it is full! It is important to recognise this situation and do something about it before it’s too late, so you empty it using problem solving techniques and calming strategies. Spend time in nature, talk to someone, practise breathing, mindfulness, gratitude and visualisation, etc. I think this approach has merit and I am certainly not suggesting ignoring it however I also recognise that it has significant limitations. Such as, what if you just can’t do these things, or what if they don’t work?
Ultimately, whether we rely on the government, the community, or ourselves, what if these strategies fail? What if life is so overwhelming that the bag remains full no matter how hard you try to empty it; the river remains flooded no matter how many times you fill up a sandbag? How far can a person be pushed before they just can’t continue anymore? My friend is desperate NOW – where is the hope?
Yes, my soul, find rest in God; my hope comes from Him. Truly He is my rock and my salvation; He is my fortress, I will not be shaken.
Psalm 62:5-6
You probably saw that coming a mile away however it’s the Truth and if you’re like me then you need to be reminded of it over, and over, and over again. I do not have the answer, but God does. He is in control of your life, He is the holder of all hope. He was there at the beginning and only He knows when the last days will come.
Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.
Jeremiah 32:17
For in Him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through Him and for Him.
Colossians 1:16
My friend, do not give up. From where you’re standing the river may be flooding, but from God’s perspective it is flowing exactly where He has planned. It is following a course that He has set. Your backpack might be ready to burst but He will strengthen the straps and make it light upon your back.
Come to me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.
Matt 11:28-30
I am not saying God will take away your burden, nor that He will make life easy, however in His strength you can do anything, including facing today, and then tomorrow, and then the next day. In a year’s time you will look back and see how, little by little, life changed. By all means, look for other supports and help to see you through, but ask God to direct your search.
Trust in the Lord with all your heart;
do not depend on your own understanding.
Seek his will in all you do,
and he will show you which path to take.
Proverbs 3:5-6
Fix your eyes on Him and He will not fail you.
I lift up my eyes to the hills- where does my help come from? My help comes from the LORD, the Maker of heaven and earth.
Psalm 121:1-2