It's been nearly a year now. It's been a tough year. So many firsts; first father's day, first mother's day, first wedding anniversary, the children's birthdays, first new school year, first football season.... the list is endless, every day of this year is the first one since Andy left us.
But the big ones are coming now. The first time we celebrate his birthday and he's not here anymore. And we will celebrate it. Celebrate that he was here, that he was born, that he lived.
The older children and I are going away for the weekend. We'll raise a glass on Saturday as we remember how much Andy insisted on making such a huge deal of his birthday; "I can't load the dishwasher, it's my birthday", "I have to watch my film/netflix series/sports programme (insert preference here!) - it's my birthday". So we will make it special and wish him happy birthday, the first without him, now that time has stood still, he will always be the same age.
Daisy is very excited about Daddy's birthday. She's off to respite and I've promised she can take a cake. She always knew that Daddy's birthday was the last of the family birthday's before hers. She has been signing that she wants to give him a hug on his birthday. I wish I could make that happen for her.
And then it's the anniversary. 14th December. 12 months since we last saw Andy. I can barely bring myself to write the words "since Andy died". I keep going by almost pretending that he's just gone away, maybe he's in another room or on a work trip, he can't really have died, he can't really be never coming back?
I'm angry at the moment. Not because it's the stage of grief that is about anger but that my circumstances mean that I can't really embrace my grief which is why I skirt around it and subconciously pretend that Andy is just away for a while.
In other cultures widows are surrounded and cushioned after their partner dies. They can rage at the world and not have to think, just enveloped in love and support. Periods of mourning are observed where women are protected from the stresses of the outside world to be left to work through their grief .
But I live in the western world, I am a woman still in her forties, I have four children who still need me regardless of their ages and abilities and I am having to fight to get them the support they need, that we need, so that we can be a family and we can get through this.
Practically from the moment Andy died my fight started. The paperwork, the benefits system, the form filling, all to make sure that we had a financial support system in place , so that my family could be safe.
Then there is the support I needed to keep my family together and give Daisy the best care possible during this time. From the early months of this year I have lived with the constant threat that the respite care that means that I can keep Daisy at home, out of hospital, the nursing support that has meant we can be together as a family during the most traumatic time of our lives, would be reduced. As I count down the days until Andy's anniversary I am embroiled in yet another complex game of letter writing, phone calls and policy and rights research to prevent the proposed drastic cuts to my care package which will leave me tied to the house , unable to commit to any after school meetings, university open days, concerts, events, all the things that are part of being a good parent. Unable to to commit to any races or regular training, all the things that keep me sane and help me manage my stress.
Apparently the additional nursing hours that were put in place last year were to assist me while Andy was terminally ill. So now that he is dead I will lose those hours it would seem...just when I am fighting tooth and nail to keep my family together and nurture and protect them through the worst thing a child could ever go through.
Of course my caring responsibilities didn't stop when Andy took his last breath. I may have been lucky to have a team of nurses helping me but that's what it is, helping me. I still manage the who complex admin that comes with having a child with additional needs (and bear in mind I have three). All the forms, all the med ordering, the list of things that Daisy needs to live runs to four pages and involves 7 different organisations . There's the phone calls and meetings, the vast team of people I have to deal with. I currently have emergency reviews for two EHC plans underway and have just finalised one EHC plan transfer - does that all sound like a foreign language to you? I wish it did to me but this is the foreign language of jargon and gobbledeygook I have had to learn to speak to be able to keep my family safe and well.
Government policy tells me that a child as complicated as Daisy should have a key worker to advocate for her across agencies, that the team should surround the child. Well the reality is somewhat different. The key worker, the advocate, the team - it's me! I go to appointments, we discuss plans then I spend weeks chasing people to make them happen as no-one takes ownership.
And I'm doing it on my own.
I'm not going to let this situation beat me. I'm going to make sure that I continue to do what Andy and I planned for our family, give them an education, experiences of life, the opportunities to fulfill their dreams.
My stress doesn't come from being a widow, it comes from the day in, day out battle I have to support and care for my family.
I wish the bureaucrats, the red tape, would all go away. I wish people would do what they say they are going to do without me having to chase them. I wish they would fight my corner when someone far removed looks at a spread sheet and remarks "this child is costing us too much"
I wish they would come and walk in my shoes. I wish they would leave me to grieve.
I wish that was an option.
But this weekend we will celebrate and raise a glass for a life well lived, and we will do the same the following month. I am not going to let this situation beat me. I will thrive and not just survive.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (83) costello syndrome (42) disability (31) TPN (18) aspergers (18) cancer (18) Great Ormond Street (16) carers (16) parenting (13) autism (9) shooting star chase (9) children's hospice (7) Blogging (6) family (6) SEN (5) Mitrofanoff (4) hospice (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) diagnosis (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)