Posts Tagged ‘special needs parenting grief’
She Won’t Break
I come across pictures all the time. Old ones. Taken back before life got really interesting with four kids. I usually find them all crumpled up under a couch or stashed in between the pages of an old book. Sometimes a corner is ripped off. A sign that my oldest, who is autistic and adores photos of his family, has treasured it and hidden it away for another day. When I found this one I stopped picking up legos and beyblades and internally cursing my kids for being so dang…
Read MoreMy Fears are Different
Parents have many fears for their children as they grow up…but as a special needs mother, my fears are so different than most. It’s difficult to put into words. So here I go…. It’s hard not to have tears roll down your face at night when everyone is asleep..when you look at your child so perfect, who is sound asleep, just thinking how much you love them. You lay there and think about everything. You can’t turn off your thoughts and fears. It’s hard to relax and take a deep…
Read MoreTo the Medical Mama: I now Understand
How many times have I watched from a distance, mostly from behind a screen, as special needs parents spent weeks or even months in the hospital with their child, and I’ve thought, “gosh, that’s got to be hard.” I had a limited understanding of how difficult an ordeal like that could be because my 16 year old son Luke has been extremely healthy for many years; healthy until last year when we spent 6 weeks in ICU with him after his shunt malfunctioned and then became infected after a new…
Read MoreYou Don’t Have to Walk This Path Alone
Sitting in the dark, of course I did it too. Too proud or too ashamed to show my tears. I remember my Gran: “You are one of us, we don’t cry, we straighten our back, chin up and smile head high, no matter what.” She told me that when I was slightly younger than my daughter. She was lecturing me because I cried over other kids bullying me. Tough skin, tough love. She was that kind of a woman. It also taught me not to show my hurt…my tears are…
Read MoreEven in the Dark, You Are Not Alone
I’ll sit with you in the dark, when you know, but you have to wait. Wait for others to believe you. Wait for insurance approvals. Wait for evaluations. Always waiting to hear what you already know. I’ll sit with you in the dark when you feel alone. When others tell you they’ll pray for you. When they tell you stories of how they know someone who knows someone. When they tell you that God gives special kids to special people. When they tell you, “but they’re so cute” or “they’re…
Read MoreLight at the End of the Tunnel
The comment read, ‘for some families, there is no light at the end of the tunnel.’ I thought about it all night. And when my toddler woke up at midnight for a hug, and then again while I drank my coffee and watched the news. I thought back to our hardest days when there was no apparent light at the end of the tunnel. Our autistic son didn’t sleep longer than 45 minutes at a time and we started every day at 3 am. We lived in this place of…
Read MoreThe Mind Versus the Heart
A few nights ago, my husband and I found ourselves driving around a picturesque town for 20 minutes or so…alone. We had no kids with us. There was no loud noise or fighting or voices from an iPad. It was just us, driving around looking at holiday lights, Christmas music playing softly. Eventually we found ourselves in the parking lot of what looked like a brand new apartment complex located right on the river. It was breathtaking. After looking at the sign, we saw it was for folks 55 plus.…
Read MoreThe ‘Why’ of Nonverbal
I catch myself staring at my son and drifting off to another place. In this place I think of what his voice would sound like. I think of what it would sound like if he could call me Momma. Over these past few years, I’ve realized time has stood still. My son has progressed into an older version of himself. He looks older…but some parts haven’t progressed. He should be telling me no, yelling at his sister as he chases her around the house and telling me what his favorite…
Read MoreBattling the Darkness
There was a time our life changed. We went from ‘typical parents’ to special needs parents. Although I still don’t see the differences. We have a different struggle, but we are still parents. Autism crept into our lives and changed the way we used our voice, while we were fighting for other kids. It sneaked into ours and asked us to use our voice for our own children. Our son was the first to be diagnosed…never did we think we would take the same road twice. I think I grieved…
Read MoreThe Shore
Being a special needs parent sometimes feels like being dropped in the middle of a turbulent ocean while a storm rages on. My family and I have been thrown in and are desperately trying to make it to shore. The shore is the promised land. It’s what we’ve always dreamed of. We should have never fallen into the ocean, we weren’t prepared for this. I don’t even know how to swim. Surely this must be some sort of mistake. But I keep telling myself that once we get to the…
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