Hello and welcome.
You have now unwittingly joined an elite club of other special needs parents, siblings, grandparents and carers who became fighters and advocates for their child upon diagnosis of their respective conditions.
We also know that this is a club that you never wanted to be a member of, and to be quite frank, we didn’t want to be members either!
But, we are, and we must all stick together and support each other as best we can.
You will be experiencing many emotions at the moment and be worried about what your child’s condition means for the future and this is completely understandable.
You will have many unanswered questions that you may have not have asked your paediatrician due to the shock.
Write them down and make another appointment to see your child’s paediatrician.
I have found that most doctors are more than happy to see you again as they know it is a lot to take in.
I am not going to tell you not to ‘Google’ your child’s condition because I know you will.
I think we all do.
But, just because the internet may give the worst-case-scenario for your child’s condition, please remember, that this does not mean it will be like this for your child.
Every child is different and progresses at their own pace.
It is important to educate your family and friends on your child’s condition as they will be shocked and upset too.
If you have been given information from your paediatrician, please, share it with them.
Help them understand.
As much as it is difficult for you, it is difficult for them as well.
I will warn you though and this part is not pleasant, but you may find that you lose friends and it may be the ones you least expect.
But if they are not willing to help and support you they are obviously not the kind of friends you want or need.
People whom otherwise you would never have met.
You may feel like you are alone but you are not.
There are lots of special needs parents out there who have all experienced the same as you.
If you look for local support groups or the internet you will find us there.
You may have also realised that having a special needs child means appointments.
I am not just talking one or two, I mean lots.
As difficult as it is to have to keep attending various clinics at different places, remember, it is all in the best interests of your child.
This one is important.
This is not what you wanted for you or your child.
This is not how you envisaged your future.
You feel hurt, anger and denial amongst other emotions.
But you need to grieve.
Grieve for the child that you thought you were going to have and the life you thought you all would have.
Grief will be an ongoing thing and come and go many times over the years.
But for all the bad that you think comes from this situation there is also good.
Nothing is more precious.
I am a special needs mummy and there is not a day goes by where my son does not make me smile.
He makes me laugh and fills my heart with love and joy.
No-one ever tells you that although things will be hard that your child will also give you lots of love and happiness.
Although this is not what any of us want for our children, I am a special needs parent and proud.
I hope one day you will feel like this too.
What sort of sling do you use?