Sometimes I cry…

This has been one of my hardest blogs to write so far. It has been a very challenging week and most days tears have been shed. And tonight all four of us shed some tears. It hasn’t solved anything but it helps release the emotions of a stressful week.

Firstly there have been tears thinking of preparing my baby boy for starting school in just 5 months time. Having your baby start school is an emotional time for any mummy. And everyone says how emotional it is to see your treasured baby suddenly wear school uniform and carry their first school bag. But for me it really is my baby. He is still drinking out of a baby bottle. He is still wearing nappies. Still reliant on me to meet his every need, still eating with his fingers, sucking on a dummy, being carried up and down stairs and still unable to speak a single word. He only took his first steps 18 months ago. And because of the system in the area we live in we still don’t know where the local government plan to send my special baby to school. As a parent I have researched in detail all the local provision available and even tried to visit schools to see what services are available. Frustratingly the council are not allowing me to visit my first choice school until they have formally notified me of their decision. I still don’t know when this will be. Thinking of my baby starting school makes me cry. Will they know how to communicate with him in a way he can understand? Will they know he would happily carry on playing in a dirty nappy for hours trapped in his own world? will they have any idea why he is flapping? Will they let him take his socks and shoes off like he loves to do at home? Will they know what his all time favourite things are to calm him down (water and feathers)? Will they care for him like I do, hold him when he cries and tell him how special he is? It may be 5 months away but I still shed a few tears thinking of all this.

Secondly there have been tears after some difficult phone calls. Calls from people who have never met my precious boy but who feel they can tell me that his needs are not ‘severe and complex’. I cried tears of sadness after that call. Then a call from a friend telling me a good friend of mine had just passed away. More tears. And the following day calls from a charity willing to help me fight to get my son into the right school to meet his needs irrespective of what the council recommend.Tears of relief and gratitude.

Then I shed more tears after a routine eye appointment for Isaac uncovered news that due to his neurofibromatosis type 1 and other scarring on his right eye it is likely he has very little vision in his right eye and that over the last 8 weeks there has been a real deterioration in his vision in this eye. My poor boy was unable to communicate any of this too me. And to discover all this he had to endue 24 hours of blurred vision and possible headaches due to having to have eye drops put in both eyes. Oh my baby… sometimes I just cry for you and everything you are having to go through.

Tonight he fell and really bumped his head at a children’s club. It was a real sore one and tomorrow he will have quite a mark on his forehead. I held my baby boy and shed tears with him while everyone continued playing around us. I wish I could wrap him up and shelter him from life. I wish I could just sit and hold him in my arms sometimes and pretend the world is just passing us by. I know he will survive this bump and I also know there will be so many more. If his vision is so poor and his co-ordinations and motor planning so affected by his autism and developmental delay there is no doubt there will be many more bumps to come. Please Lord protect this baby of mine from any internal damage I can not see.

And now comes the hardest part to blog about. The hardest part to share with a world of people I hardly know. The part this week that has brought more tears than any of those other challenges we have faced joined together in the last 7 days. The reports and evidence that my baby boy has stated to self harm. He has started to bite his wrists until they bleed and does not seem to feel the pain. Oh Jesus….help me as I drown in my tears. Carry me through this valley. I want to talk to my baby, let him open his heart to me, hear his cries, share his tears. Instead he chews on a metal teaspoon watching peppa pig, and so locked in his own world I can only imagine the pain and frustration that could cause my 4 year old baby to self harm. Is it excitement, frustration, anger, stress? Is it sensory related or a sign you are hungry or thirsty? Oh baby…I wish you could tell me. I want to help you.

So in all this I cry and I pray. And I believe that tomorrow is a new day. A fresh start. And God will carry us through all this. I still have a strong faith…it’s just sometimes I cry.

“you keep track of all my sorrows, you have collected all my tears in your bottle. You have recorded each one in your book. My enemies will retreat when I call to you for help. This I know: God is on my side.” Ps 56:8-9 NLT

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Laughing at Life

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I put my little boy to bed tonight and put the monitor on. His room was dark and the house was quiet. He can not yet speak a single word and this last week he has been covered in chicken pox, but when I came downstairs my whole house was filled with the sound of laughter. Isaac was laughing: loud, contagious and hearty laughs. I ought not to be surprised as his very name means laughter!

When I was pregnant with my twins my husband and myself talked often about names. We had a girl’s name picked early on and when we found out we were having boy/girl twins the search was on for a matching boys name. We read through books of names and discussed various options before settling on Isaac. Naomi and Isaac. Together they mean ‘pleasant’ and ‘laughter’. We thought this sounded heavenly. And they both live up to their names. In the first two years I often joked that I should have renamed them ‘sleepless’ and ‘nights’ though!

But there is something remarkable about hearing Isaac laugh himself to sleep. His laughter is my therapy. While he is laughing I am downstairs reading yet another report about him. A report listing his ‘problems’ his ‘concerns’ his ‘difficulties’, his ‘challenges’. Tonights report is about how he requires specialist provision for his up and coming transition to school in August. It is not easy to read and will then be filed in a metal filing box rapidly filling up even though he is only 4. He has what they call ‘severe and complex needs’ but these people need to hear my boy laugh like he is laughing tonight! No-one knows what he is finding so hilarious but it is catching. I look over to my husband quietly reading, enjoying some well earned relaxation, and he is smiling too. If only I could record this laughter to let you hear it. I would love to see you smile too.

I have decided I need to laugh more too. I have been through so much in life that I don’t find at all funny but I can now think of funny moments during those hard times.

My dad died over 11 years ago when he quite suddenly found out he had cancer.He was working one day and 4 weeks later died.He was only in his forties. But I can think tonight of a very funny memory of him sitting sewing buttons onto one of his work shirts and proudly holding the shirt up for us all to see, only for all the buttons to fall off onto the floor! He had missed the holes every time he was threading. Boy did the whole family laugh that night.

I didn’t find it funny when my twins were first born and I was utterly sleep deprived and found it hard to function. But then I think of a funny moment when my health visitor visited and I was crying changing my daughters nappy because I thought she has lost a vital bit and he pointed out it was Naomi I was changing and not her brother! I laughed at that one for weeks.

And then there’s the funny things children says all the time. Today’s one from my daughter was “if you can’t think of things mummy and your brain doesn’t work then you need to change your batteries!” And one time my mum caught my younger brother laughing when he was a child and when asked what he was laughing at he said “I’ve just told myself a joke I didn’t know!”

So here I am thinking of all these funny things and I still have this report in front of me. And then I see a line in the midst of a very serious report that reads “Isaac tolerates his parents”. At any other time I would be questioning what this meant, what is implied by this or even being annoyed at such a silly statement but tonight I am going to take a leaf out of my disabled son’s book of life and laugh at these four words written in the midst of this otherwise depressing and serious report.

They’ll be plenty of time for tears later but for tonight I’m just going to laugh at life and enjoy the journey. I hope you have laughed a little with me.