Just a Note: It is coming up to the whole Xmas season or whatever family tradition that you may have... Honestly, it can be, OK it IS, a terrible time for all of us as DIPG parents and Carers in all the stages of this dread disease... It is also an End of Year, which generally provokes A Life Review of your Year... Added to this are all the Family Dynamics and Friends... and their Year Review... Added to this is the fact of a Terminally ill child that is either, newly diagnosed, in the process, dying, or died in any given time frame... Plus the fact that no one wants to be around the DIPG family as such because most of the time they dont know what to do and it does overwhelm them while Your Officially Drowning... It is Not your place to Help them while you are in the DIPG process... It not being Their Child has a huge effect in Understanding... If I had not gone through it with my son, I could only touch on the terrible nature of DIPG and the loss of a child, the Hospice nurses have said the same thing... That they really just dont know how You feel... And I hope they Never do... Also the family relationships between parents are under Huge pressure and the current rate of failure is about 80%... Now, we have all of that and more with a lot of parents and carers feeling similar with different medical experiences, length of time of their DIPG experience and that they are Similar and Different at the same time... Simply: The Loss of a Child is the Worst Ever - and it Wont Change - It changes All of Us, in some way... What we do with that is what matters... Plus you need to survive in some fashion... I know that the Brain Filter we would normally use is almost shredded... So, other coping mechanisms must be found... And they will be Unique to You... I Suppose I am asking You to be Aware of Your limitations and that you be Kind to You in a way that helps bring some balance back into your lives that are in a now different Universe... We are all here to help each other and I recognize that Our pains are different, just as valid, and that there are No Answers... Just that we are here and are facing the loss of a child or have been through it... We all want a Cure, a treatment, our children back... It will take time, for some of those... All Emotions are Valid - It is What we do with Them.. Take Care as Much as You Can... Gerry Tye
Posted on: Mon, 01 Dec 2014 02:06:19 +0000
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