When your little ones is born and none of the concerns are raised during the newborn check you think to yourself: we did it ! We made it thorough the pregnancy!! Our precious baby is born!!! Everything is going to be ok. You don't realise how wrong you can be...
Suddenly your entire life changes just like that. Your baby starts missing the milestone, she does not develop like her peers. It gets to the point where the gaps between your little one and children her age or younger are so visible that you are wondering what the future holds?
I always wonder or worry if I will ever hear her say ‘Mummy’, ‘Daddy’ or ‘I love you’,
Raising a non verbal child is not only heartbreaking but it is so hard. It is hard for Leah as it contributes to her frustration but it is also hard for us as parents.
Let’s try something together. Lets do a simple visual exercise.
Close your eyes for a minute and imagine that you’re really hungry but you depend on someone else to bring you food. Imagine how you’d feel if you needed to eat but you had no way to let other people know about it. You’re trying to talk but nothing comes out of your mouth. You try to mime what you want with your hands but all the wrong movements come out.
It sounds pretty scary, doesn’t it? This is the life of many children with global developmental delay or similar conditions.
Some of them are trying to communicate and failing and some of them don’t even try at all, though they still have those needs that are sadly unmet.
Leah is unable to make her needs heard.
Have you ever had a dream where you’re in danger and you’re screaming and calling for help but no sounds come out of your mouth?
This is our daily life , our daily struggles.
I want to help Leah so much. I want to fix all the issues that make her upset , uncomfortable or frustrated. I don’t want to fix Leah as to me she is just perfect the way she is but I want to "fix her "broken voice" and make it all better because that’s what moms do. They make it better. But although I try so hard I just can’t do it....
When Leah needs something or is frustrated and I’m unable to understand what it is, I feel powerless, hopeless and like a failure 😞
I often end up in tears ,upset and so disappointed in myself.
But beside all the struggles I’m so proud of Leah and all the little steps that she achieves on her developmental path. I wouldn’t trade her for the world, I truly mean it. She is so amazing, she taught me so much about myself, perseverance, tolerance, courage, accepting our differences, patience and what is really important in life than I had learned in my whole life up to now.
I am sharing this on here to remind myself that despite all our challenges, Leah brings so much joy and positivity into our life's.
What I would like to change are her struggles, I’d change the co-morbid conditions that come with global developmental delay : speech impairment, mobility issues and sensory issues.
My dream is to give Leah a voice. To make her heard and to make her life just a little bit easier and so much better ❤️