My week of ‘oh for ffs’

This past week was; what I will call my week of ‘Oh for F***k sake’ – I must have said that at least 1000 times.

It started; as it meant to go on, I guess.
J got a note home from school–he had been telling porkies (again)- any parent with a child with ADHD will tell you, telling ‘porkies’ is common for our kids– I on the other hand, like to believe there may be a writer in J bursting to get out –it is possible, right?!
I received a letter bright and early Tuesday morning. What wonders lay in this handwritten envelope ? I excitedly ripped it open…it was a ‘Dear John’ – our family support worker was needed elsewhere, his seven year ‘stint’ with Ethan would come to an end by December 16th.
I spent Tuesday writing all my anger out in the hopes it would prevent me from exploding on the phone to the service providers–it did not.
Wednesday, my wonderful darling husband departed for London; a prearranged nerd, Google, I mean Google trip. He would not return until early Saturday morning– the lucky son of a ….
The stupid car was supposed to go into the local garage as it is crying out for a service, a bit of TLC for all the abuse the poor ‘ol yoke gets … Wednesday they had no available slots so it was decided Grandad J would bring the car in while D was away.
Wednesday I spoke to the service providers and had to be reminded to mind my language… eventually I minded my language and apologised– the truth of it was; I would need that language for any and all TD’s calling to my house any time soon; with their cut backs to services and adding more and more families into the services …I thought it best to save my language skills for them;afterall they are the ones who underfunded and over stretched such vital services.
Thursday–ERT day (Ethan recieves a man made version of his missing enzyme, which takes up to 3 and a half hours).

Ethan decided 5am was ‘up’ time and I woke to the all too familiar ‘aroma’ of…dudu (yes, poop)
Ethan had to stay off school for the whole day due to his regular nurse having a day off; so no school, different nurse, daddy missing , no sleep equals meltdown city.
In between refereeing , playing, supervising and refereeing Ethan and the toddler; I had many phone calls to make — while Ethan roared and screamed at the poor nurse who was trying her best to keep him relatively quiet; bless her for even trying eh?!
And then my cramps came– yes ladies; real bad bad monthly pains. I was in agony and all I wanted was a hot water bottle and chocolate– I searched the kitchen for any hit of a chocolate biscuit but with 3 boys running loose..who was I kidding?! I finally got the hot water bottle only to discover it was leaking… my belly is still red.
The car was mocking me, sitting in the driveway…no garage appointment and no driver’s licence held by yours truly— I know, crazy right? I am learning to drive in the new year–fair warning to you all on our local Galway roads–but giving out to me now is pointless –I needed chocolate and could not even think about walking Ethan plus the dictator anywhere, let alone down to the local shop while the howling winds blew…not worth it.
A ‘ding dong’ changed my Thursday in an instant.
S and her new baby stood in the doorway along with another friend L and her not-so-new baby but still new; you know what I mean! S handed me CHOCOLATE and we all had a ‘tiny’ depressing chat as I blurted out everything to both L and S…they left five minutes later as Ethan was just ‘checking’ that S’ baby was real and not a doll— yes my heart was in my mouth..I was happy to seem them both and their babies but I was delighted to see them leave! STRESS!
Throughout my week of ‘For F**k sake’ my darling, wonderful, amazing friend A was up and down to my house helping me survive… I am pretty sure her own son A (13) thought I had stolen his mammy…the truth is I kind of had?! I don’t think she had the heart to leave me until at least my cramps eased! Solid gold friend or what?!
Friday was a bit better; Ethan had school which meant I was free…for a few hours. I have never been so excited to go into town to buy overpriced dictator runners in all my life; and then to go grocery shopping after; well I was in my element…yes, it is easy please me!
My sister brought us and decided to do her grocery shopping also. We had a trolley each; I know this is not going to give local drivers much faith in me when I learn to drive, but I cannot steer a trolley. Can’t. Don’t know why, I am just pathetic at it. But….a woman came out of nowhere; saw me struggle with my trolley load of god-knows-what- because I was starving while shopping, and she steered it from the end of the trolley right over to the car– what a lady eh?! I did make her laugh so I feel we both got something from our exchange–that counts right?! (In fairness how could she not laugh; the dictator was repeating “Let aunty L do it mammy, you not safe” while I was calling my sister, who had her own trolley, “Help me, for the love of God help me L”) —you’re beginning to understand the reason I am not driving yet aren’t you?
My other good friend T called up Friday evening, I believe she was checking my sanity…which was in way better shape as it was 7pm when she called….7pm is almost bedtime for my mini me’s….so I am always happy around that time of the evening!
We had a grand cup of tae and she brought buns… yummy.
D crawled into our bed by 3am early Saturday morning.
We brought Ethan down to meet our Dodgeball friends–yes Dodgeball! D and I play it every Tuesday evening together…it is great fun and so simple–dodge the balls!
They were taking part in a Dodgeball tournament which they organised to raise funds for research into Hunter Syndrome in honour of Ethan — watching Ethan meet them all and run wild with excitement made the stress of my ‘For F**k sake’ week just melt away…
It was so heartwarming as they all cheered Ethan, tried their best to engage him and asked D and I questions about him and the on going research– I could tell many of them had googled Hunter Syndrome as they were well able to converse with me about the syndrome; which impressed me . I had planned on giving a small speech but my emotions got the better of me as cameras all came out and Ethan posed for pictures while flirting with most of the women there.
To our Dodgeball mates- Thank you all- it is never just about the funds raised, it is about how you guys decided to help boys all over the world living with Hunter Syndrome; you created awareness while you fundraised which is priceless– THANK YOU ALL!
Tomorrow I am going up to Dublin to a ‘bloggers’ conference with D in Grandad J’s borrowed car; our poor ‘ol yoke still hasn’t seen a mechanic.
A plus aunty L are babysitting all three boys—how lucky are we?
Looking back; I guess my week could have been worse…
My weekend sure made up for it …
I need a glass…bottle of wine now…

This was orginally posted on FamilyFriendlyHQ here



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