Dealing with diagnosis & beyond. A letter to my husband….

By Tara Thompson

Still, to this day I remember us talking about if we had a child with special needs. To be honest, it was something I never really thought about, but you did. It had always been a fear for you; a fear that your child may struggle, a fear that they would have a harder life, a fear they could be in pain or hurt in some way. Does this make you a horrible person? Not, at all. I think we can all admit that deep down this is a fear. But it’s something that you thought about a little more then me; part of me never understood why.

You thought that you wouldn’t be able to cope.

Then, when I was just over 29 weeks pregnant, baby number two made an early appearance, giving us all a big surprise. You were my rock – you held my hand through it all and the NICU life didn’t seem as scary with you by my side. When our daughter was only 3 weeks old I walked in the unit to find her not in her humidity crib; confused, a nurse came and showed me that she had been transferred to a bassinet. I remember wishing you were there to share this huge milestone. I also remember wishing you were there for the news I received just after.

A doctor came over to me and said that our beautiful, thriving little baby had damage to her brain. My legs felt like they gave way and I couldn’t comprehend what he was saying…informing me of a list of disabilities and issues she may face. You walked in to the ward to find me running out in complete and utter shock, tears streaming down my face.

I had to break this news to you. Your one fear. You calmed me first and then went back to give that doctor a piece of your mind; how dare he tell me news like this with you not there. My protector. That day, the world stood still while we processed the news, but you told me everything was going to be ok and I was reassured.

At 7 months our baby girl was diagnosed with cerebral palsy. You handled it really well, and again you were my rock. But that was just you – you seemed to handle everything well – I would often tell people that things just don’t stress you out or worry you.

Although I embraced the diagnosis and life with our daughter, the first two years were the hardest for me. I put a lot of pressure on myself to make sure I gave her the best possible start. I would always share how I felt with you and you would always listen. The only concern you ever spoke about is how you worried that as she got older she will be upset and kids may treat her differently.

I threw myself into the therapy world, I started an instagram page, I shared our journey and play ideas, connected with other special needs families and I really felt a sense of acceptance. You began acting differently. Finally you shared that you were hurting and that all this time had not been accepting any of it. You had always done everything in your power to not see me upset and for over two years had been so strong making sure I adapted to my new role as a special needs mum.

It was time to swap roles. Like most males you tended not to share your feelings or recognise when you needed support too. I hadn’t returned to work properly and I had made it my mission to throw myself into the early intervention world. I would only do therapy activities during the weekdays and began to stop sharing every detail of every appointment or constantly speaking about all of the skills she needed to develop and work on. I had an instagram page and you followed along and continued to be the hands on dad you always had been, but home life just became ‘normal’. This seemed to work for both of us.

Then came the night that you checked on her to find her having a scary intense seizure. I was a mess, I had no idea what was happening and fear swept over me. You were calm and told me what to do while assuring our eldest daughter that everything would be ok. You managed the whole situation, spoke to the ambulance officers and helped me through the following months when I was too scared to sleep.

At 3.5years the autism diagnosis came. Again you assured me that it was ok and said it was a relief as now we could understand why she acted the way she did at times.

Yesterday, for the first time, Willow questioned something about having cerebral palsy and also for the first time showed sadness. It broke my heart and I shared it. I’ve looked to her instagram page as a huge source of support for 4 years now and for the first time you shared too, not only with me but openly and honestly shared your thoughts with others…This is what you said:

‘This realisation has always been one of the things I have struggled with ever since Willow’s diagnosis. The idea that my baby would one day realise she is different and feel sad about it has meant I haven’t dealt with her disability very well. I have always looked to the future with the negative in mind, which has caused a lot of internal pain. But you have always been my strength and source of inspiration like you are to all of your followers. You have always picked me up and I have realised that although Willow may be different she can still excel and be a fierce girl and woman like her mumma is. Although she may get her ‘I don’t care attitude from me’ she definitely gets her strength and courage from you. You are amazing in every way and there is no better person in the world to guide Willow through those tough questions than you”

Why would I share this?

Because I want to let people know why I have learnt to be so strong. People often comment that Willow is so lucky to have a mum like me, commenting how I have helped them along in their journey, thanking me for sharing play ideas for them to try with their children. But the only way I do this is because you have helped me become the strong mum I needed to be.

Because, husbands and dads like you need to be recognised. The type of husband and dad that consistently makes sure his family is ok even if it means pushing his own fears and worries aside. Because, maybe other dads out there feel like they aren’t coping; feel like they may be letting people down or don’t know what to do. But in fact, the truth is that they are doing an amazing job.