I have a thread over on SN chat atm about my DD. She's 2.6 and has a Global Developmental Delay including Physical Delay, Speech Delay, Hip Problems, Squinted eye, Hearing and Chest issues including Asthma - I've posted about her before.
I've always been a pretty laid back person. At school the other girls used to say if "RedPatch is crying then it's got to be serious because she never cries".
But recently I've been finding myself getting anxious every time the post arrives. DD has a lot of appointments every week and I find myself dedicating more and more time to her conditions. I don't mind because she's my DD but I feel so anxious when a letter comes through the door addressed to "Parent/Guardian of Little Patched Ankle" and even sometimes crying putting the dates into the calendar and seeing "appointment for Little Patched at x hospital, at y time and on z date"
I'm already on antidepressants due to the stress of everything with DD. But it's getting too much again. I've considered giving her up, especially when we have 12+ appointments in a month and it feels like I'm paying £500 a month for her to not attend Nursery which is a lot of money. But I wouldn't do that, as I do love her, and her me (she told her keyworker at Nursery "Mumma love-y" (mummy lovely)) and it wouldn't be fair to her and I'd always wonder "what if".
But I dread the postman arriving. I know it's not his fault, he only delivers the letters, but I feel sick at the thought of the post arriving tomorrow - bills and junk mail I can cope with it's the appointments. I feel so worried for her, and her future. It's blood tests for this and urine samples for that, with an x-ray on her hips and chest and an MRI thrown in for good measure. This is surely unsustainable when she's at school?
I don't have health anxiety and manage to make the appointments fun and an adventure for DD - stuff like taking the train there instead of driving as she loves trains. But it shouldn't be like this, should it? I'm scared of the postman which is ridiculous because he's actually a very nice man with 2 grown up children and a dog.
So AIBU to ask how I can get over this anxiety? And how I can stop being scared of the postman?
AIBU?
To dread the postman arriving?
RedPatchedAnkle · 12/01/2018 12:45
Can you go to your GP and ask for therapy? I think you need to talk to some one about how you feel, completely understandably - it's a lot to be managing with. Or is there a carers group for mums nearby? You just need support and to be listened to i think 
I've no experience of a poorly child at all OP, but I didn't want to read and run. I know you're obviously very busy, but might you be able to fit in some CBT sessions for yorself? I've suffered from anxiety on and off over the years, and it's the only thing that helped me. You can self refer (get the nuber through your GP) and can have appointments over the phone, so you wouldn't be adding to the already long list of appointments you already have to travel to. 
This is so sad, I'm so sorry for your DD. I can't offer anything but
Hi Red! I have three children, all with GDD and I can tell you that 18m to 3 years was the hardest emotionally. That’s when all their peers are really taking off developmentally and my son was non mobile and non verbal. It really hurts.
With my oldest I found anything written on paper about him tear inducing. It’s as if seeing it written down makes it more real.
As he’s got older it’s got easier (I never thought I’d say that!) to deal with the emotions. I found that it comes in waves. I had a particularly bad time when the twins were diagnosed with the same condition but I take everyday as it comes and try not to look too far ahead. Something that really helped me was learning about ‘Chronic Sorrow’ or you can also google ‘special needs parenting grief’. It helped me understand why I felt like I did.
As my children get older and I have more time I have found going to support groups helpful. None of my friends understand what my life is like and how hard it is but the support group do.
My oldest is 9 and the twins are 5. We do still have a lot of appointments at the hospital but the number has definitely decreased over the years. We see most of the specialists once a year. We moved close to the children’s hospital so it doesn’t take a whole day to go to an appointment!
If you want to chat you can send me a PM
Hi. It's fantastic that so many services are involved but it often becomes overwhelming for the child and their parents.
Are some services trying to do joint appointments or make sure their appointments happen straight after each other so trips to children centre or hospital are reduced. This is something we try to do in my area.
Are there some services that you can ask to have a break from for a bit like speech therapy. Could you continue what they suggest at home and be reassessed in three months for example.
Parents who become overwhelmed with appts we try to offer joint home visits with other services. Speech and physio go out together.
12 appts a month of non medical is too much.
Can you ask to have a care coordinator to help sort it.
Areas operate so differently but you can't continue like this.
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