Wednesday, April 18, 2012


I think, or I should say, I know tht I go through stages of "dealing".  Just dealing with emotions I've never had regarding my four older girls that seem to bombard me with my youngest one.  While the joys she has brought to our life are enormous, growing, and life altering...there are days or periods of time when I  regret things for her.  It makes me sad that she isn't able to attend youth group with her peers at church.  I have let her go to Sunday School, but youth group is another story.  The little episode Monday only reinforces my fears of letting her go.  I'm never that far away, but having a child that is fragile AND nonverbal along with caregivers that would likely have NO clue what was happening or needed to happen, would just be too much.  I'm ok with that, but it doesn't change the fact that it makes me sad.  Probably the same reason I struggle with all day Kindergarten.  There is not even a nurse present at the school at all times. 

I am ecstatic by the things she is able to do and the things she works at doing, but it doesn't always cover the pains in my heart when I see a two year old doing things Lillian cannot.  I periodically, not often, but occasionally grieve the things she can't participate in or just go so long when life seems so rocky and I think I hit the wall and it all comes down hard on me. 

I do believe God is using her to change me.  I hope some part of what I've gone through is speaking to someone else in whatever way is relevant.  That IS what covers the pain. 

 To quote a friend and fellow warrior mama, " It seems we are always in search of the new normal and by the time we realize what it is another change comes along"  so so true.  

So I will continue to come here and type and sometimes weep.  It's just hard today...period. 

Lillian seems improved today, her feedings are still going very poorly.  She is easily agitated and requiring treatments.  We will skip therapy tomorrow in order to let her sleep as long as she needs. 


  1. Hang in there Beautiful you have a host of Angels at your side.

  2. I was just talking to another medically fragile mom yesterday. We talked about how having them has changed us, and not all for the good. Thats ok, Jax has changed my life, and so many others, and I wouldn't change that for anything. I love that I have the love and support of so many in our same situation! Hang in there!