Special Needs Mamas- GET HELP!

 

This week, I went to my endocrinologist. I have hypothyroidism and finally started getting treated for it a year and a half ago. 

He looked at my numbers and meds, then put down his clipboard and did the whole doctor face thing. He raised his eyebrows and said, "Okay, you have to tell me. What are you doing different?"

He went on, "In the last year, you have lost more than 30 pounds, your heart rate and blood pressure are perfect, and you are much happier- I can tell. I know I am good at treating hypothyroidism, but I'm not THAT good. So tell me what it is." 

And I told him, "I finally got help."

I GOT HELP. Real, actual, long-term help.

Two years ago, I was drowning. Chelsea was still smearing poop every day. She had major behavior problems, and Lily had been recently diagnosed and was still a baby. I couldn't see the light at the end of the tunnel. I was completely and utterly depleted, and had NOTHING more to give. I had burned myself out. I had no joy left and lived second to second.

"Just get help!" people told me. To which I always responded "HOW???" 

How on earth was I supposed to find the time and energy to research respite programs, fill out the hundreds of pages of paperwork (I wish that was an exaggeration!), call all the numbers (after hunting them down!), and then follow-up with each agency??? I was just trying to keep up with the insurance calls and ARDs and paperwork and behaviors and therapy! 

How was I supposed to have 5 minutes during the day for myself when I felt like I was just managing one crisis after another? I didn't have time to fill out paperwork and dig up social security cards when I have to watch my kids every second of every day for seizures and still pack therapy around cooking special diets and driving to dozens of doctor visits. 

My children consumed all of me. I cried almost every day, not from sadness of what my kids were going through, but because I was so, so tired and overwhelmed. It got to the point where I got on medication for anxiety and depression. I am one of the most naturally optimistic people out there, but I couldn't take the stress anymore. You can't even begin to describe the burnout until you have lived it. 

But then a year ago...

Chelsea's name came up for a Medicaid waiver program after 5 years of waiting. What does that mean? I will tell you!

That meant that we got her on Medicaid because of her disability and most of her medical bills were covered. But also, that meant that we got RESPITE!!! That basically means I could hire someone to come help with Chelsea for up to 40 hours a week, paid for my the government (note: WAY cheaper than placing a child in an institution!). If I needed help with sweeping the floor, they could do that. If I needed someone to read to Chelsea while I cooked dinner, they could help with that. 

It wasn't an immediate cause and effect. It took several months of having daily help for several hours each day for me to phase out of my flight or flight chronic stress mode. We took all the money we saved from having Chelsea's seizure medicine covered ($1,000/ month AFTER insurance), and I had my hernia repaired and got a tummy tuck to fix my abs after three pregnancies. Do I recommend it? 1,000%!!! I feel SO much better about myself!

After about four months, I was able to get off my depression and anxiety medicine. I started losing weight. I suddenly had the motivation to go jogging again. I found the desire to develop my own hobbies again and wrote not one, but three novels, and have two more in the works! 

My marriage flourished. I started enjoying time with my kids again. I started seeing my friends again. And I have never felt better!

So- all those special needs mamas out there, when you are feeling stressed out of your eyeballs, remember that self-care isn't a long, hot bath. It isn't having two dinners brought in by friends. It will mean serious long-term help. Because what we are doing is HARD. And we need major help! Do not EVER feel bad for needing help! I know it can be hard to find those programs. But they are so, so worth it!!! 

And if you know a special needs mama, please consider doing something to help them. We are tired. So very, very tired. 

And finally, I can't say "Get Help" without thinking of this scene: