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Sunlight Burning at Midnight a memoir by Jessica Ronne

 

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Just some random, irrelevant, humorous, and hopefully inspiring musings on life, love, faith, widowhood, remarriage, adoption, blended families, caring for a handicapped child, mothering seven children, chickens, cooking, grief, over-coming grief, and everything else in between. Just Keep Livin!!

Things That Press My Annoyed Button.

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There are some days that I get so annoyed with having a special needs child.  Today was one of those days. The moments where the screaming never ends because of a problem he’s unable to express.  Or the days where the diapers pile up from an eight year old, or when his bedding is bloodied from the night before when he was frustrated about something and engaged in an hour long head banging session, or the dinnertime sessions when he doesn’t want to eat anything but cookies and drink apple juice and there is absolutely nothing I can do to try and reason with him.  Those are the days that test my patience; those are the days when I scream, “Lord, WHY!?”  What good does this do me and what good does this do him and what good does this do anyone?  What joy can this child be getting from his life Lord? 
I am far from that mother who loves to feel needed.  I was texting back and forth with a dear friend the other night and she was expressing her loneliness over not feeling needed so much by her family anymore, and I jokingly said, “I wish I had more of that in me.”  I don’t feel that so much as a mom and that is especially difficult when raising a special needs child who desperately needs me for every aspect of his livelihood.  He needs me to eat, to sleep, to move, to get dressed, to be bathed, to drink, to have his diaper changed, and the list could go on and on and on.   I am much more of an advocate for rearing children to be very independent; encouraging them to try and accomplish tasks on their own versus relying on mom and dad to do everything for them.  I guess I figure most kids want to do it themselves so why don’t we let them?  Because we fear they may not do it exactly the way we would do it?  I guess I’m past caring that much about the details with seven little ones and willing to take my chances most days.
 Back to Luke, my precious miracle boy.  Most days he is as easy going as I could ever wish for, laid back, content to eat, drink, and watch his VeggieTales all day long.  Even his father commented the other day about how his own perception of special needs children has changed so much since becoming a part of Luke’s life and how he ironically thinks some of our other children probably qualify for that title much more than Luke even does! 
At the end of the day, all of my questions will hang in the air.  I will continue to be very much needed by my special little guy, like it or not, and maybe that is God teaching me something about how I need to rely on my Heavenly Father for my very livelihood just as Luke relies on me for his.  All that I know for sure is that God puts things in our lives not necessarily to make us happy but instead to make us holy – to mold us and make us into the best of the best that he sees in us.   “Count it all joy, my brothers, when you meet trials of various kinds,  for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4
And not only that, everything that God does is for his ultimate glory and to draw all men unto himself.  “But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.” I Peter 4:13. Luke has done that more in his eight years just in the testimony of his life than most of us will do in a lifetime. In this very short amount of time that I’ve been given on this earth I will raise my special little boy to the best of my ability and then I will completely and emphatically rejoice with him some day in Heaven when we both are made complete, whole, and healed, without an ounce of sin upon us, dancing in the streets of gold. 
Just keep livin!!
Tagged in: faith special needs
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