Our lives changed yesterday

I’ve decided to be open with you all about this journey, but I needed a night (and probably more!) to process it all.

So as many of you are aware, we had our diagnostic appointment yesterday for S. I was anxious and uneasy, Sean was calm and collected– it would’ve been a normal day for us, except that it wasn’t.

We came into the appointment with the knowledge that we would likely leave with an autism diagnosis, and we did. You’d think that knowing ahead of time what was coming would soften the blow, but I’ve come to conclusion that I am not the kind of human that likes to see the punches coming.

We sat down with the doctor and gave him the rundown so far of our experiences with S. He asked a lot of questions, watched Scarlett interact with us/toys as best as he could, and said that we were looking at autism with a major emphasis on sensory and speech difficulties.

Thankfully, that wasn’t the end of the appointment. He told us that if we continue the therapy we are currently doing and add quite a bit more, he’s optimistic that Scarlett will be able to function pretty normally, and hopefully in time, be able to “drop” the autism diagnosis.

Before the autism community comes at me with fists flying, allow me to explain. I know that there is no such thing as a “cure” for autism. What the doctor meant by dropping the diagnosis is that he is optimistic that with an increase of therapy in both frequency and intensity, Scarlett may be able to function so normally in society that we may not even feel the need to disclose that she is autistic. That said, she is obviously she’s still quite young, so we really have no way of knowing quite yet where exactly she lies on the spectrum, just that she’s on it.

Anyone that knows me well knows that I am a wimp. I am scared of everything, friends. Scared of spiders, moths, the dark, water where I can’t see my feet– I am a total scaredy-cat. But friends, this fear– the fear of not knowing if your child will be bullied, not accepted, not “normal”, alone– this is a level of fear I have never felt before. As much as I wish it were not the case, people are often unkind to those who are different, that’s just how the world works. My daughter could grow up to be the most brilliant, kind, loving human on the planet, but if she can not learn to control her need to walk in circles or overcome her inability to speak at the level of her peers, it is unlikely she will ever pass as “normal”. As a parent, that is terrifying. That unknown is terrifying.

But again, her doctor was very optimistic of her prognosis, with the caveat that she continues and ramps up her therapy. I am clinging to that optimism, because for now, the tunnel seems long and oh-so dark.

All that said:

My girl is smart. She is funny. She is sweet. She is loving. She is fierce. She is stubborn. She is everything I dreamed she would be and so much more. When I was pregnant with her, they asked if we wanted to have genetic testing done to check for defects in case we may want to terminate the pregnancy. Sean and I refused them because we knew that no matter what, we would love this child. And we do, so fiercely. She was designed beautifully, and I am so thankful to have her. She has already taught me so many things about myself and the world around me, and though this road has been difficult and overwhelmingly painful at times, I am so glad to be on it with her.

To those who help bear our burdens: thank you

Bear one another’s burdens, and so fulfill the law of Christ.
Galatians 6:2

We are creeping closer and closer to Tuesday, the first of Scarlett’s two diagnostic appointments. It would be a lie for me to tell you that I’m not worried, that I’m not anxious, and that I’m not terrified by what they’ll tell us about my girl. I have a pretty good guess, sure, but over the last year, I’ve made my peace with the unknown. I’ve been floating along in this little bubble where I know that something isn’t right, but I don’t know what that something is. It doesn’t really matter, to be honest, because it’s not like my daily life will change much…but still, the confirmation of a diagnosis is a scary precipice to be on the edge of.

What I have figured out is the reason that I’m not quite as nervous as I could be–and that’s because I know that no matter what they tell us over the next two weeks, I have people in my corner. I have people to help carry my burden– whatever that burden is.

Friends, humans were not made to go through life alone. When Adam was alone in the garden with only the animals for company, God saw that it was not good, and made a helper for him (Genesis 2:18). I’m forever thankful for the people God has surrounded me with. I’ve said this before, but I know that when I ask for prayers, the good majority of people who say they’ll pray for me actually go and do it. I had someone say to me, “well, you can’t really expect them to actually pray for you, right? Their life doesn’t revolve around you…I’m sure they just tell you they did it and don’t actually do it” (and believe me, I know that no one needs that kind of negativity in their life)…but that’s really the amazing thing about it. That person was absolutely (kind of ) right– people’s lives don’t revolve around me, but they still take a few minutes to pray for me when I ask. They take the time to ask how my girl is doing, and what changes have happened lately that I may not have shared publicly. They take the time to buy her food pouches when she’s going through them like mad, and even when she isn’t. They take the time to tell me that they love her and are loving watching her grow and develop. They take the time to hold my girl when she’ll let them, and to chase her around when she won’t. They take time to cut up her food at potlucks so that I can eat, too. They tell me they love sitting behind us at church when I apologize for how grouchy and disruptive my children can be. In the past, our people have offered to watch her to give me a break, to sit with her while I tried to wean her onto a bottle, to help me shuffle other kids during therapy, to bring us food when she’s sick, to go with me to appointments for support and to be an extra set of ears…I could go on and on.

I really feel like a broken record sometimes because I say that I am thankful for our people so often, but it is no less true now than the first time I said it. If anything, it’s more true.

As we go into a period of terrifying uncertainty, I am thankful to have the support of the people God has blessed me with. I know that no matter what we’re told over the next two weeks, we will not be supported any less, and my girl will not be loved any less. If you’re reading this, you’re one of the people we have in our village–so, thank you. Thank you for helping bear our burdens.

What to say to the mama of a special needs child

I’ve had this post sitting unfinished in my drafts section for a while. Every time I start it I put it down, because nothing seems to come out the way I want it to.

But now, friends, I am pulling it out of the cobwebs, because it’s time.

Prior to this blog, there weren’t many people I would give intimate details to about our life with Scarlett. I’m a pretty private person, as far as that’s concerned. People would ask, and I’d say things were fine…even when they sometimes weren’t. It’s just a thing we humans do– put on a face and pretend like we’re swimming when we’re secretly drowning. To be honest, I’m not sure if it’s to make other people comfortable (another unfinished blog post in my drafts), or to save our hearts from the pain of admitting that things are sometimes not fine.

Point is, there are times where the mama of a special needs child may give you a peek of the realities of special needs parenting. There may come a day where a special needs mama loops you in to how difficult her life was that day, and you are then faced with the dilemma of how to respond.

Let me say this– more often than not, we aren’t looking for a solution. I don’t need you to tell me how to solve whatever problem I’m in the middle of, because if you could, you need to be out there writing a book, my friend. If I am admitting to a friend that I had a hard day, or that I had a difficult experience with something in particular, I am usually looking for a simple message of support.

Let me give you a few examples:

“I am so sorry you had a hard day, friend. I hope tomorrow is better for you”.

“I know how hard that must’ve been for you. But props to you for doing the hard things, even when they’re painful for you”.

I appreciate the advice, friends, I truly do. There are those from whom I welcome the advice. And even from the ones I don’t exactly welcome advice, I know they mean well.

But what means more to me than anything else is a verbal affirmation of the support I already know I have. Does that make sense? I hope so.

I know that I am surrounded by countless individuals that would try to move mountains for me if I asked them to. But friends, when I am reminded that I am not in this thing alone, it brings my heart so much peace.

Let me give you another scenario.

With Scarlett, there are times where I have to do all the hard things. Last night, for example, I had to pin her down and scrape the cradle cap off her scalp. It’s been a long time coming…but up until now (and even now, let’s get real), I never felt that I could hold her down to get at it. She flailed, she scratched, and screamed a scream that could be heard in the next state, friends. It was horrible. It was a painful, horrific experience that I wish I could erase from my memory entirely.

On the days like last night, more than anything else, there are thoughts of self-doubt. I constantly doubt myself– am I doing the right things? Am I doing enough, or too much? Could I have handled X differently? So. Much. Self-doubt. And I know that as a parent of two NT children that some self-doubt comes along with being a parent, but with a special needs parent, it comes at another level entirely. The fear of not doing enough– of not BEING enough– is almost paralyzing at times. Similarly, there’s also fears of feeling too much. Am I overreacting? Am I feeling this experience at a 10 when it should be a 4?

It is on the hard days where a simple, “I see you, friend. What you did was hard. It’s okay to feel that”, reminds me that I am not crazy. I am a human who is struggling to parent a child that is drastically different than myself. I should not be expected to know how to handle every experience that flies at my face.

Remind special needs parents of that fact. They are not crazy to struggle. They are not crazy to feel. They are not overreacting. They are not crazy to question themselves.  Remind them of that.

So here, my friends, is my advice on what to say to a special needs parent. It’s simple really– they already know they have your support. It’s simply your job to remind them of that. Remind them that they are loved, that they are doing the best they can, that they are enough, and that they are seen.

And maybe next time you see them, bring them a coffee. They probably need one.