Does life give us lemons, or do we make our own?

I recently saw a meme that lemons were not naturally made, but rather man made through selective breeding. If your brain is like mine, you are probably going to google this to fact check it. Well, I'll save you some time....lemons are a hybrid between citrons and sour oranges and are believed to have evolved from a natural crossing of these plants wildly, and then they became more selectively bred by humans to make the lemons we know today.

So, lemons are just like our life's circumstances, some have been given to us and some are a result of our choices/actions. We all are dealt a hand of cards, that can be ever changing throughout our lives. Some of these cards we will never be able to discard, for Elliot this includes his genetic makeup. Other cards we will be able to turn into a play or be able to discard. Many of our circumstances are of our own making, which is reassuring because it means we can change them to better suite our life.

When life deals you a crappy hand, you have two choices- accept it and fold to the pressure of these circumstances, or to start making choices that can improve your hand. With Elliot, we cannot change that he has MCAP. What we can change is how we deal with the repercussions of his diagnosis.

In January, I changed jobs and chose uncertainty because I knew flexibility better suited my life at this time. I changed jobs because I no longer trusted my upper management team to be looking out for my best interest, and in doing so, I found an upper management team that has been supportive, flexible, understanding, and uplifting. This support helps me not to feel overwhelmed at work and to not feel guilty when I have to make unexpected schedule changes.

Additionally, I chose to share with my patients what is going on with Elliot. Typically, I'm not one to share intimate life details with my patients, but I knew that inevitably what was going on in my life would affect their care at times. I've had to cancel last minute on patients because a new referral that only has a specific time to be able to see Elliot. I've forgotten things that I typically wouldn't. Sharing with my patients helped them to have grace with me. Sharing with them has led to even more support. My patients ask about Elliot often and ask about how I'm doing, and they pray for us. I'm so lucky to care for these individuals.

We are in the process of trying to change our hand again. Elliot currently attends a private day care and they've expressed concerns about continuing Elliot's care there due to his inability to eat solid foods. While they haven't kicked him out yet, that threat is looming as earlier this summer they said we would need to find new care if he didn't start eating. Right now we are just trying to stay under the radar at daycare so we don't lose childcare. At around the time we were given this warning, I discovered a Facebook support page for families of children with MCAP syndrome. This led me to a conversation with another MCAP mom who informed me that Elliot may be eligible for Medicaid due to his diagnosis. Fast forward several weeks, and we are officially on a waiting list for two Medicaid waiver programs. If we are allocated a spot, Elliot will have Medicaid insurance and we will qualify for other additional supports/services. Additionally, if he is able to get Medicaid, he may be able to attend a medical daycare in town. This would be such a gift as insurance will pay for the daycare, formula is provided by the daycare, and he would be able to have all the therapies his developmental team has recommended in house at that daycare. I'm hopeful that we are on the right track for this, as access to these therapies without us missing work feels like it would lift so much weight off our shoulders. Right now with our insurance, Elliot is allocated 35 therapy sessions per year. Those 35 sessions aren't per therapy type either, it's combined. Elliot's developmental team recommended feeding therapy, speech therapy, occupational therapy, and physical therapy. I'm sure you're able to do that math and can see we aren't able to meet all his needs with our insurance, which just means if we want him to have these services we are looking at either fighting for insurance coverage, or paying out of pocket. Medicaid will give us access to all that is recommended for him.

My advice to parents of kids with medically complex needs is to ask about services early and often. I wish I had known about the Medicaid waiver program a little earlier, before we had the pressure of possibly losing childcare and before we had the stress of significant medical bills. If you're meeting with multiple care providers in a shared hospital, ask about case management. Talk to your local community mental health clinics about early intervention programs. Google and check Facebook for support groups. You do not have to find resources on your own, but you do have to advocate for yourself and your child.

MCAP syndrome is our sour lemon, our crappy hand, and we are learning to make changes to sweeten it with time.