72 remember: EVERYONE HATES CHEMO. How I survived my son's chemotherapy.
2-22-2018 What a beautiful morning. Ben has been through so much and he is handling the chemo well. But he really hates it (I tell him that is ok, and EVERYONE HATES CHEMO) his sweet little heart has so many big worries and fears it is hard to know quite how to comfort him when truth be told I am scared to death myself. Last night eye pain & pain in his port kept him up until early morning and worry for his upcoming surgeries just overwhelmed him. It was sad.
It is hard to see this sweet sleeping boy and know all the fears that he struggles with at night - there is so much uncertainty in his future and not knowing what to expect is so hard. We try to plan for the best. When the best is 18 months of chemo sometimes it can be hard to stay positive. When you see Ben words like "I've missed you" "I love you" "nice to see you again" are so much better than questions like "how are you doing".
After getting just a few hours of sleep last night waking up this morning to get the other kids to school was so hard. When I looked out the window and saw snow and then learning school was delayed 2 hours it felt like a huge blessing just for me – like a big hug straight from heaven with a whisper of "get some rest, you need it, - and everything will be ok.“
Have you ever had a moment in life like this – when a totally unexpected blessing came at a really low point in your life? Share it here:
If nothing pops into your mind think about it for a while – and start really searching for a memory where something unexpected lightened your load or helped you through a hard time. Even a tiny little thing – how have you been blessed?
Often even on rough days if you really focus you can remember at least one nice thing that happened. (you can do this each night and it can help to refocus your attention on the positive right before bed.)
Take a little time to think of the best thing that happened to you today.
What is a blessing you recognized 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 F. CHEMO
70 I was terrified, and it went wonderfully …
71 life was unfair- understanding & compassion for another
72 EVERYONE HATES CHEMO -
73 Do not despair.
74 Unknowns in the future affect each of us differently.
75 The little surprise blessings make everything manageable.
76 Life is fragile. Create a special moment with a loved one.
77 We cannot be perfect; don’t push yourself past your limits.
78 Excitement about physical activity.
79 Motherhood: HARD uncomfortable and overwhelming.
80 What group could you join for support?
81 Wishes are magical things.
82 Refusing to acknowledge fear only creates more pain.
83 Remembering your best journey can be a nice distraction.
84 What dreams do you have for yourself?
85 hard to watch a little heart break.
86 Feelings can bring our needs to our attention.
87 Anticipating an upcoming trip can give us joy.
88 VIP treatment sure feels good, thank you Make-a-Wish.
89 Worry - listen to your fear and take steps to protect yourself.
90 The resilience of kids is just amazing.
91 Devote time to things that really matter to you.
92 We MAKE time for the things that are truly priorities.
93 Don’t let worry for the future rob TODAY of nice moments.
94 We have help and people on the sidelines cheering us on.
95 The good we throw out in the world always comes back to us.
96 A mom who cares and does her best (not perfection).
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 #watchandwait
#copingskills #ChildhoodCancer
#Carboplatin #Vincrystine
#nevergiveup #thereishope #PediatricBrainCancer