59 It is ok to not be OK; how I survived my 9 year old son's recovery from brain surgery.
We were so exhausted from our experience and hospital stay,
and the stress for the future weighing heavily on us - self care had to start with teeny tiny little steps… some days this looked like lying down on the couch instead of on my bed for a change of scenery… Bob got right back to work, and I don’t even know how he did it. I think I spent at least a week laying around with Ben, always there to help with whatever he needed, and napping when possible.
It is so important to remember:
IT IS OK TO NOT BE OK.
Some days you need to take it easy on yourself.
During difficult days it is ok to FEEL whatever painful emotions pop up. It is ok if you need to take an extra nap or sleep in… Don’t feel bad if you cannot do as much as you want, sometimes you need to rest to allow your heart and spirit to heal.
What does self care look like for you today?
This is just one of a hundred tools that helped me including: A: BEFORE DIAGNOSIS B: Diagnosis and PRE-SURGERY HOSPITAL STAY C: SURGERY D: RECOVERY in patient E: At home recovery
56 “best day ever”? Feelings of gratitude can be so uplifting.
57 It is so easy to take family for granted.
58 A nice hot bubble bath can be soothing.
59 IT IS OK TO NOT BE OK.
60 Imagine your very favorite place in the world.
61 Helping kids come to terms with a difficult diagnosis.
62 Checklist to get yourself back on track with self-care.
63 Go for a short walk
64 Yoga can be relaxing and soothing.
65 Making your first thought a positive one.
66 Congratulate yourself for doing difficult things.
67 Pop bubble wrap.
68 DANCE to peppy positive song.
69 Plan a fun activity for yourself
F. CHEMO G. FAILING CHEMO H. WATCH AND WAIT I. NEEDING NEW TREATMENT
J. END OF NEW TREATMENT / watch and wait
** Living life one day at a time.
Topics I have thought and talked a lot about over the last few years include:
#momguilt #PediatricBrainTumor #Neurofibramatosis
#Glioma #Astrocytoma #PilocyticAstrocytoma
#BrainTumor #OpticNerveGlioma #PediatricBrainSurgery
#NF1 #ParentingChronicIllness #Mekinist
#watchandwait #trametinib #copingskills
#Carboplatin #Vincrystine #ChildhoodCancer
#nevergiveup #thereishope #PediatricBrainCancer