If there is one thing I have found in this special needs parenting journey, is that no two parents will react to the news in the same way.”
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Medically Fragile Children
Dear Medical Professionals
“Yes, it’s almost like we are asking you to be God. But you don’t have all the answers, and can’t preform all the miracles.”
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Dear Insurance Company~ A Letter From A Special Needs Family
“I know we are not your ideal of a customer. You would rather not have us enrolled on your rolls.
Yours is a business that is for-profit. You want to make money. But despite our paying you hundreds of dollars every year, and then paying thousands of dollars out of pocket every year, our family puts you in the red every year.”
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Should My Daughter Take Responsibility For Her Older Brother?
“This line we walk as parents is often confusing, and you find yourself always second guessing if you are making the right choices.” Read more. . .
Am I to Blame For My Child’s Diagnosis?
“Am I to blame for my child’s diagnosis?”
This is the question parents with Special Needs ask themselves, pretty much without exception. There is A LOT of guilt that accompanies having a special needs child. I have seen it in both with Mothers and Fathers. At some point in our parenting journey, no matter the circumstances, we wonder or blame ourselves.
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Adrenaline? I Faced Down A Moose, What Did You Do?
I may not jump out of airplanes or repel off cliffs. But my life is filled with adrenaline packed moments and I don’t see that ending anytime soon. So I’ll take my facing down Moose and Bears and leave the skydiving to my Husband. Read more. . .
Have You Burned Out On Your Research About Your Child’s Disability?
When my son was first diagnosed with Autism, I visited the local Autism Society and brought home armloads of books. Then I returned again and got more stacks of books which I delved into. Autism, ADHD, Sensory Disorder, I tried to find out every single thing I could. It continued for a couple months. Autism wasn’t a diagnosis I was expecting nor was it one I knew a lot about. I burned out on all those books. Read more…
There Are Good People In The World- Christmas 2008
Often people wonder if there are any good people left in the world.
It was the Christmas season of 2008. My husband was out of work. I was working as a Nanny for a family. I was able to bring my children to work. This saved on childcare.
My son at, 2 1/2, had caught a cold. Like every other cold he developed, it immediately caused an Asthma flare up. It was a long night. I sporadically slept with him in my arms as he struggled to breathe. Giving him breathing treatments at least every 4 hours.
Exhausted I dragged myself and my children to work along with the nebulizer. I should have called in sick. But with my husband out of work, I really needed to work. And he’d gotten an odd job for the day.
Around noon I realized my son was struggling to breathe despite the treatments. I left work and rushed him to the E.R. calling my husband on the way.
Once examined, they immediately admitted him. We started him on oxygen, multiple nebulizer treatments, and steroids, as his oxygen saturation levels were low. As it was prime season for RSV, they tested for that.
The nature of RSV is that it is a virus that anyone can get but in children age 0-2 it’s particularly dangerous. His test results came back positive. To prevent the spread of the virus to other children he was moved to an isolation room. He was 2 1/2 years old. It wasn’t supposed to be dangerous anymore for him, but it was.
Oxygen levels had to continually be monitored, so he had a pulse ox on his big toe, along with oxygen being given through his nose, and nebulizer treatments round the clock at a minimum of every 4 hours with a mask. If you have never held up a mask for your child to breathe into for half an hour at a time, you don’t know what hell it is. They don’t want that mask anywhere near their faces, let alone the oxygen in their nose. Lots of screaming ensues.
Then there are the normal blood pressure checks and heart monitors. Lots of chords were hooked up to this little boy who didn’t understand why he couldn’t get up and play, and couldn’t breathe. All night long and day after day this was where he and I stayed, cuddled together on a hospital bed watching Disney movies and trying to catch some sleep between treatments, blood pressure checks, and other interruptions.
Two nights before Christmas the hospital and other caring people put on a holiday party for the parents who were stuck in the hospital with our children. Nurses and other staff members stayed with our children to give us a chance to leave our child’s room. We were served Outback Steakhouse for dinner instead of hospital food (which after being there for a week was like manna from heaven). Then, we were led into a room where we could go Christmas shopping for our kids, 2 gifts per child. Not just the child who was in the hospital, but also for any other children you might have as well. All free of charge. Generous people had donated these gifts, knowing that our families likely were not going to be able to get out of the hospital to go Christmas shopping and money might be tight due to medical bills.
The next day, Christmas Eve, our son was finally released from the hospital, although still sick, his oxygen levels were staying high enough that they felt they could let him go home. We were so happy just to be home for Christmas in our own beds, with no more hospital food. This would have been Christmas enough for us.
Christmas gifts didn’t end there. Kind friends, knowing that we had been in the hospital and had not had time to buy or make a Christmas dinner, dropped it by that night for the next day. Yet more friends knowing my husband was out of work and money was tight, brought us Christmas gifts. Yet another kind stranger knowing that we needed new tires for our car, left an anonymous donation to cover the cost.
Tears of gratitude filled our souls as we prepared for Christmas that night. The next morning we were overwhelmed as we opened the gifts that were given with such generosity to us.
Some people think there are no good people left in this world.
I write this, wanting my children to know-
Long Term Care For Our Children: It Shouldn’t Be So Hard
A while ago I posted a rather long post about the state of long-term care for children in the U.S. If you made it all the way through, I commend you. It was long. . .
I want to clarify something about what I wrote in that post. That clarification is that I and other families are not just seeking a handout. Read more…
The Hard Things, The Necessary Things
I was scrolling through my Facebook feed this weekend and a particular post stopped me in my tracks. It said- “What did you do this weekend?” A perfectly innocuous post. Read more…
