Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

A Day in the Life of a Parent of a Child with Special Health Care Needs

01/10/2017 | Published by: Leslie Curtis

As parents of a child with special health care needs, we have all had those days that never seem to end. This past week, there was just such a day. I'm still not sure how I fit in my work duties around my parenting duties. Puberty, crazy weather, and another ear infection threw everything into a tailspin.

It all started last Monday as I was frantically getting Jac, my son, ready for school. Like most moms, I was preparing breakfast, getting backpacks ready, and trying to throw some coffee down my throat. I had a restless night with little sleep from my beloved child and really needed a caffeine jolt so I could function at my job. During the terrible sleep-deprived past weekend, I sent emails to his doctors (who are in the process of adjusting his medications), so I knew I would be getting a response from them sometime during the day.  

I keep a daily list of errands and phone calls—and on Mondays, the list is usually extra long. The weather had been rainy, overcast, and as a result, Jac's asthma was terrible. So we were now needing breathing treatments at home and at school. Of course, I could only find one mask and nebulizer kit. The breathing treatment medicine I had at home had reached its expiration date (of course) so that meant an extra phone call to his regular doctor for a new prescription. The school had to have a current medication to give him. 

By mid-morning, I had received three emails from his teacher, a couple of emails from the doctor, and a call from his primary doctor about lab results that were needing to be talked about. 

I still needed to find a breathing treatment mask, go by the pharmacy to get the new medications that had been called in, and then get them all to the school nurse. 

I made a quick trip by my house and of course there was a letter regarding Jac and his placement on one of the waiver lists. I assumed that was a good thing, but then realized I had always been told to call one of the case managers to discuss any concerns. 

Be sure you are making the right decision for your child. I needed to do that, too. 

Long story short, I was able to pick up the medications, review the lab results via email, call a case manager regarding the new possible waiver program, and then take the medications and mask up to the school.  

I kept thinking late into the night: Is this the life of a normal parent? Did I even eat today? Did I go the restroom today? I still am not sure about some of those answers. 

What a wild ride we are on! 

This website has lots of information on parenting and its challenges. Have a look at Navigating Daily Life.

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