Another Push From the Universe

My journey into advocacy began earlier than I realized. Even though I was a nurse, being a patient advocate day in and day out, this journey was different. Suddenly, I was a mother, fighting continuously trying to get help for my daughter. I had no idea what to expect for a child with an eating disorder I’d never heard of. 

Not to mention the constant battle of being told “It’s just a phase,” “There’s nothing to be done,” and “Just stop letting her do that.” 

Eleven years into this battle, I brought home my second daughter…better late than never. 

Everything was going fine until it seemed like I was really never going to sleep again. She wouldn't sleep unless I was holding her. I wasn’t okay with this. I need my ZZZ. 

After a couple of months of this, things got bad. Not only was I exhausted, but I was feeling really miserable. It suddenly dawned on me I had postpartum depression. No one tells you this can creep up on you months after the baby is born. There you are, watching for it in the first month or two (maybe!), doing ok, then you let your guard down. That was me. Suddenly I was a hot effing mess and I didn't understand why.

I reached out for help and that went south fast too. I got about 6 weeks of phone call "visits" because we were in the peak quarantine before I was discharged as "better." Absolutely nothing was done to help me. I had to figure it out on my own. 

That shit doesn't just go away, FYI.

Then, precious baby developed failure to thrive – just like her sister. As if I didn't feel low enough, now I had done this to two babies. What was wrong with me?

Breastfeeding took a nose dive. What was I doing wrong?! I was doing everything “they” said. And more! I was seeing a lactation specialist every week who assured us we were doing great. I had even ventured out mid-pandemic with no mask because I hadn’t left my house in two months to have the baby’s lip tie repaired. Just one more thing I was assured for several months wasn’t an issue until I found someone who confirmed that it was. 

(Just so we’re clear, the very kind people at that office gave me a mask and helped a distressed mama out. It was very clear I had been so isolated for two months I didn’t even know I needed a mask or my mind…) 

The baby continued with bouts of not sleeping and I was on double duty, doing everything I could to improve her weight. Pumping day and night, eating too many calories, bottle feeding a baby who’d never taken a bottle. Everything. The only one gaining was me. Lactation cookies taste good, but that’s the extent of their magic.

So. Many. Cookies.

Photo credit: 
Ben Lei

Once she started eating solid food, she started improving on her own. But we still had to be cautious.

And then. . . as if this wasn't enough already, it was determined she had developmental delays. She wasn't “speaking” at the level she should have been. At 9 months old, she started speech therapy.

As time progressed, we realized she also had oral motor and sensory issues. She began occupational and physical therapy, which she continued until she turned three. These things, coupled with her very high energy level, and others, make her a high-demand, high-needs child.

Now, at 3 1/2 years old, it is no exaggeration to tell you she had every sleep regression known. And quite possibly some that aren’t talked about. Haha…

Her speech was very gradual and didn't truly begin improving until a couple of months before she turned 3. Now we're seeing almost constant improvement. We continuously work to help her sensory needs and her energy levels, but once again, I find myself with limited resources.

I continuously advocate for her needs. And I can see now, I will need to continue to advocate for her for many years to come. Both for her health and likely her education.

She is not like her peers. She is incredibly smart, loving, and outgoing, but she does not have the ability or restraint to stop moving. She doesn't understand this and neither do other people. This is going to make things very hard for her.

People look down on us all the time. Looking at her like she's a bad kid, at me like I'm a bad parent. People who should support us belittle us. Telling me and others how I'm doing things wrong. Every day I work to find strength for myself to support her and her needs. It's not easy. It shouldn’t be so hard. Unfortunately, the world doesn't see "different" as a blessing.

I'm here to change that.

Children like my girls are blessings. Wonderful in their own right. They are special for a reason. I'm here to support them and help them find that reason. And while I do that, I'm going to support other families who need it too, because it gets damn lonely. But listen when I tell you, YOU ARE NOT ALONE! I see you!

These girls are the reason I left nursing (don't get me wrong there are other reasons too. Nursing is a mess!). These girls are the reason I started my business. They need me, and whether they know or not, I need them.

So, if you’re feeling lonely on your journey or find yourself wondering how you’re supposed to figure it out because no one is giving you the answers you need, come join my Facebook group. If you are at your wit's end and are ready to learn more about becoming the advocate your high-needs child needs, let’s talk.