My World

I have had a difficult few days.  I am feeling down and in desperate need for change.  The isolation of Sanfilippo has been pronounced lately.  I feel so entrenched in this "special needs world", that I am losing my ability to function in normal society.  I am finding myself feeling quite awkward at times.

I often talk with my fellow MPS moms about parenting.  Many of the moms also have "typical/unaffected" children.  They have one foot in the real world and one in the special needs world.  It seems so difficult to me, because it is so unknown.  I do not know how to parent a normally developing child.  It is actually intimidating.  I don't know how they function trying to balance both worlds.

Recently though, I have been feeling so alone.  It isn't easy for people to come into my world.  It is intimidating for them.  It can be scary.  Their kids don't understand and they don't know how to explain it, so they avoid.  I understand.

I simply wish things were different.


mamabear said…
Praying for you, Shannon, tonight. Saddened to read this. May God lift you up and bring in the right people soon. Isolation, on top of everything else, is so hard. Please God, soon.
Anonymous said…
I will be praying that you feel God's arms of love wrapped around you. You are doing an amazing job with your beautiful children.
TheBoyceCrew said…
Thank you for your honesty. I find myself always being able to relate in some degree in a very unique way, have both my children with Sanfilippo and loosing a pulse on the normal world. As I sit in the hospital near Jayden, I also welcomed my friends 3rd healthy child.... so hard. Rejoice with those who rejoice, mourn with those who mourn, right?
Linda said…
Thinking of you and your beautiful family!!! You and Matt are doing an amazing job. Hope the messages from all your friends around the world help give you the comfort and strength you need!
Lots of love,

Linda x
The Leivas said…
I am feeling a lot of the same way lately and I have peter who is typical. I want to do "normal" things with him but I don't want to exclude Olivia. I think that Peter is starting to realize that something isn't quite right with Olivia. I feel like I don't know how to parent either of my children and I'm somehow just stuck driving down the road without a map. Sometimes I end up in the right place but more often than not I'm totally lost.
I hope that you feel better soon. There's no way you could be alone because I can identify so much with what you're saying. Thank you for sharing so much!

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