The Guilt That Doesn’t Go Away

A smile plastered to my face, I silently scout the room. Quietly, I observe. I watch faces, I listen for whispers, I note reactions. My instincts are heightened in any social situation, especially ones involving interactions with other families and other children. I am a protective mama bear watching over her cub like a hawk.

Guilt. According to Psychology Today: “When one causes harm to another, guilt is a natural emotional response. Guilt is self-focused but also highly socially relevant: It’s thought to serve important interpersonal functions by, for example, encouraging the repair of valuable relationships and discouraging acts that could damage them. But in excess, guilt may needlessly burden those who experience it.” I know I am not alone when I tell you that I, a special needs parent (I don’t like that term) live with that emotion every single day of my life.

Most special needs (did I mention that I really dislike that term) parent would tell you the same. I remember when I would avoid social situations because I was worried about what other parents would think of my son’s behavior. I am so ashamed to write that. I remember I wouldn’t post certain videos that highlighted my son’s delays or strange behaviors. Again, ashamed. We tend to create these expectations of our lives, of our kids’ lives, before we/they even have the opportunity to live them out.

We didn’t try to get pregnant. In fact, we were actively trying to prevent pregnancy. So when I missed my period (which literally never happened), I still didn’t think much of it and bought TWO bottles of wine along with the box of two pregnancy tests at Target. Stress, I figured. I was in a Master’s program and it was my final semester which required a lot of work, and attributed my extreme fatigue and missed period to that. Shocker: it was not stress.

Definitely surprised, but totally accepting, we moved forward with the pregnancy, buying all the baby things and loving doctor’s appointments. I wasn’t scared the first pregnancy. I loved feelings his kicks and I didn’t mind gaining weight. So. Much. Weight. The pregnancy itself was uneventful. Labor was an entirely different story.

Caden was well past his due date when I woke up to bleeding. They had talked about inducing since he was over 41 weeks and I was already over 4 centimeters dilated, but I wasn’t hopeful that he was coming that day. My dad had flown in from the east coast, and my husband was at work. I told my dad I was going to the Emergency Room since my doctor told me I needed to, but that he should stay home. I was sure they would just do a check, tell me the bleeding was normal, and send me home. But my dad insisted he go with me, and when I got to the hospital, I found out I was having contractions that I didn’t feel. So the process began.

And here is where I start to blame myself. Blame (turned guilt) can feel like a wildfire running through your body if you let it. It can consume you to the point of crippling your entire mind and body.

Caden’s labor was rough. Since I didn’t feel the contractions, they had to add Pitocin. I wanted a natural, vaginal birth and this wasn’t working out how I had envisioned. (Expectations, man. They’ll get your every time.) I didn’t want the epidural, because again, expectations. So I sat there and writhed in the most excruciating pain until midnight (over 12 hours of active labor) when I asked for the epidural. Of course there was only one anesthesiologist working because of the hour, and he was in an emergency surgery. So I waited a few more hours, and then the glorious epidural was delivered.

I remember after that I was able to rest off and on, but nurses were constantly coming in and moving me from side to side because Caden’s heart rate would decelerate constantly. And blood. There was so much blood. The nurses were constantly changing the pads I was lying on because they would become soaked in blood. Looking back now, I wish I would have spoken up. It didn’t feel right. But what did I know? I was a first time mom and these were the professionals. BLAME.

Finally, once the doctor got to the hospital in the morning, they told me I was able to push. I could not feel a single thing. I hated it. If you know me, you know I can’t stand to feel out of control. But I couldn’t feel anything. I had asked the nurses earlier to turn off the Pitocin since mine was on a constant drip, but the nurses never turned it off. So, it was what it was. I spent 3 hours (yes, THREE) trying to push Caden out of my vaginal canal. He was stuck. SO stuck. I remember praying in between each time the doctor would read the machine to see when I was having contractions to tell me to push. The doctor warned if we didn’t get Caden out she would have to use some forceps contraption and repeated the risks loud. “Chance of defects, chance of blindness, deafness, death…” I just remember Justin whispering in my ear the I could do it. I remember feeling so tired, and unsure if I was able to do it. Finally, Caden came out sunny side up, eyes wide open (which explains the extreme back pain).

The NICU team was waiting in the room because of the rough labor and the issues with Caden’s breathing but cleared him relatively quickly. After that, I felt like things were “normal”, and we went home and tried to adjust to having a newborn baby. There were a lot of things I look back on now and recognize as larger issues than I believed them to be at the time. I remember telling my mom early on that I think something was different with Caden and she laughed and reminded me that I was a hypochondriac (true).

Life went on like usual. Caden had unique health issues from early on that impacted his growth and development. You don’t necessarily notice the impact early on, even if you start to recognize that things just aren’t “right”. You start to see some differences during mommy and me playdates. You see differences at the park, watching other kids interact. Smaller playdates were the worst. Your friends’ kids start walking, then talking, and you start to notice delays. You question what you did wrong and what you could have done differently. Some days, in some situations, the pain hurts more than other times, or lasts longer than it used to. Honestly, I don’t think that ever goes away. I think the more you see your child struggle or suffer, the more you try to assume fault because it makes us feel a little less powerless.

So here I am, looking around the room, watching other kids interact with one another. I see one little boy pick another for his partner in a game, and another pair find each other, and my husband stand up and eagerly tell Caden he will be his partner. I see two little girls find each other for another activity, willingly seeking one another in unison. Caden doesn’t know any different, and excitedly joins in the game with his dad as his partner. I keep a smile on my face and cheer Caden on excitedly as my husband’s eyes find mine and I know he knows. In that moment, Caden thinks there is nothing better in the entire world than his dad being his partner. And in that moment, that single moment. as the guilt creeps up and feels hot in my stomach, I am OK with that.

Typically Atypical

“Your son has autism.”

This will probably piss a lot of people off, but those words felt like a death sentence to me. The lump I felt in my throat and the heat I felt behind my eyes gave way, and the tears fell quickly and freely down my cheeks. My husband, Justin, grabbed my arms, and mouthed, “it’s going to be OK. He is going to be OK.” I could just nod. The developmental specialist (sweetest guy ever) assured me it was mild, but I heard the softness and understanding in his voice when he asked me how I felt. Instead of saying “like crying”, I responded, “like dying.” Freudian slip.

You see, life for Caden has NEVER been easy. Autism isn’t the first diagnosis we have received, although, for some strange reason right now, it feels like the “worst.” Worst. Weird, right? I am comparing diagnoses of my son. What kind of mother am I? Special needs parents know what I am talking about… how many of us play the “well, at least he doesn’t have that.” Really silly rationalizing, but somehow makes us feel better in the moment.

When Caden was only 12 months old, he had his first tonic-clonic seizure, and had aspirated and asphyxiated. That night was, and will probably always will be, the scariest night of my life. We thought our son was dead. My body relives that night just by thinking about it. We had found Caden rigid and blue, with his eyes unmoving, and we could only see the whites of his eyes, as if his eyes were fixed to the back of his head. We couldn’t seem to get him to breathe. His body wasn’t moving as I dialed 911 while simultaneously running out of the door, with Justin running to the car with me, with Caden in his arms, trying to resuscitate him. No shoes, no bra, just praying so fiercely to God that He not take Caden that night. I remember so vividly asking God to let Caden live and to take me instead. The 911 operator told us to pull over and let the ambulance take over, but we lived so close to the hospital and I knew we could beat them. Just as she was telling me to pull over, Caden started crying. This cry that I will never, ever forget, not because it sounded like he was in so much pain (that, too), but because he sounded at all. All of a sudden, his lifeless, rigid body came to, and I remember distinctly feeling like I could breathe again. I didn’t even realize how hard I was holding my breath, but even now, 6 years later, I still have moments where I realize how hard I am holding my breath. I know now that that will never go away.

That was the first of many long nights with Caden. Since that night, his speech and language have regressed. His health has suffered. We have had many sleepless nights where we sleep with him to make sure he is still breathing, and to this day, if we wake before him, I still panic that I am going to find him in his bed, dead. Justin or I will make sure, every night, that Caden is breathing before we go to bed. It’s our normal, but as I reflect on our reality, I realize how painful it is.

In Caden’s 6 short years, he has been diagnosed with severe apraxia, epilepsy, an immune disorder (which has caused us to stay in the hospital in his short life than most people spend in an entire lifetime), two genetic disorders (one recessive, thankfully), intellectual disability, and now… autism. I have come to terms (seriously, though… what does that even mean?) about Caden’s former diagnoses, but not this one. I am still processing. And maybe that’s just how it works.

MOM GUILT. BLAME. ANXIETY. All present factors in my life since Caden. (To be VERY clear: not BECAUSE of Caden, but SINCE that defining night 6 years ago.) Any special needs parent knows how hard you stay hit with guilt, blame, and anxiety. Like, a “regular” parent guilt, but times 100 and on speed and then sometimes cocaine. I don’t know about you, but I play the “what if” game literally every single day. Every. Single. Day. No matter who says what to me, I still blame myself. I don’t care who you are, what degree you hold, or how much I love and trust you, I blame myself. I will always blame myself. In some way, shape, or form, Caden struggles because of something I did or didn’t do. At this point, though, I recognize that that doesn’t matter. What matters now is how we will deal with this, how we will process this, and how we will manage this.

I smile. I pretend. I hide the pain I feel so deeply in my gut when I see typical kids playing together, and Caden trying to talk to one of the kids, and the mother looking up helplessly at me silently saying “we can’t understand him.” So I instinctively apologize for him. “Oh, he has a language and speech delay, so he is hard to understand.” And she smiles as if she understands, and I translate the words Caden is saying. She will probably never understand.

I don’t have resentment for you, or your typical kids. I have sadness and pain for mine. This doesn’t make my love for him any less, or my admiration for who he is any diminished. (I really do think I have the most perfect kids in the world, and that doesn’t change that. But really… they’re the best in the universe.) I would argue that it does the opposite: I get to love my child in a way that parents of typical children would never understand. I remember there was a time when I was hesitant to post pictures of videos that indicated any of Caden’s delays. It took me a long time (too long) before I realized it wasn’t shame, embarrassment, or even pride that stopped me from posting those things. It was pain. I would see other children doing things so easily and effortlessly and it stung to the core to see what came so easily to others is such a struggle for my child.

In my head, I know that this diagnosis isn’t really a death sentence. I know that it just means we will add more daily therapies to the list of appointments that we somehow find the time for, because we make the time for the things that matter. My son teaches me more about life than he will ever realize. He gives me a purpose that is far beyond my understanding most of the time. I fight for him on a daily basis. In this moment, I will embrace the pain, I will allow it to envelope me, and I will allow myself to feel guilt, and sadness, and regret for all the things I tell myself I could have done differently. But soon I will use that same pain to fuel me.

My life with children will never be what I had expected. (Because, really, what parent expects for their child to struggle with health issues and neurological complications?) My life is still rich, and it is still full. It is the opposite of typical, and nothing like I could have dreamed. My struggles and my pains are the same as yours, but they’re different. And I wouldn’t change my child, or my life, for anything. Because my child is the same as yours, but he is different.

Same Storm, Different Boat

I had a session today with a client, and like most therapists working with clients during this season, we were discussing survival, of course. This amazing client made the comment that “we are all in the same boat.” I nodded my head, but it really got me thinking. Are we all in the same boat? Because from where I’m sitting in my comfy bed, scrolling through my Facebook and Instagram feeds, we are most definitely not all in the same boat.

I know people who are working because their jobs are considered essential. I know people within that population who hate that they are considered essential because they fear that they may bring home a virus that can have tragic results, and then I know others within that population who feel nothing but blessed that they are able to continue helping people, continue providing, continue some sort of semblance of normalcy. I know most people vacillate between the two.

I know people who are struggling to make ends meet because they aren’t considered essential workers, and are drowning in the struggle or not being able to provide financially, or struggling emotionally, mentally, and even physically with not being able to go to work, or have the resemblance of “normal”. I know people who are beyond thankful to not be considered an essential worker, so that they can spend more time with their families, and not feel the guilt or pressure of possibly bringing home a virus that could seriously impact a family member or loved one. I know most people waver between the two.

We aren’t in the same boat, guys. Some of us are floating by in something that looks too much like a yellow rubber ducky, and some of us are cruising by in yachts. Some of us are frantically tossing water out of our boats by the bucket loads. Some of us are sinking, some are swimming, and some are floating along, grabbing a life vest for dear life, waiting for the tides to change.

The storm may look the same, but our boats are different. And whatever your boat might look like during this season, remember: this too shall pass.

Faith > Fear

I sit in an office across from one or two people (usually) for about 28 hours a week. I am probably a good 5-feet from my clients, at any given time. I practice a form of attachment therapy and hugging at the end is a common practice for me. I haven’t gone full teletherapy (seeing my clients “face-to-face” via video chat), and right now, my plan is to continue this mode of practice.

Within the world of psychotherapy, we see a lot of controversy regarding social distancing and what that looks like. You can search any therapist group and read threads of therapists discussing what he/she may be practicing, what best practice is during this season, and how to handle the chaos that has infiltrated our clients’ safe spaces (and our own).

Moments of crisis teach us about people. And in this season of scary, remember that your kids are watching you, hearing you, learning from you. They are watching you make some pretty big decisions, and deal with some potentially life-changing situations. Your kids can feel your fear, or they can feel your faith.

Uncertainty is scary. It is the basis of fear, and fear drives people in a way security wouldn’t dream. It drives people to do things they wouldn’t ordinarily do; to make decisions they otherwise wouldn’t, and perhaps to say things they would only otherwise think. Your kids are watching. You can make decisions based on fear, or based on faith.

Smile at a Stranger!

“I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I’ve learned that making a ‘living’ is not the same thing as making a ‘life.’ I’ve learned that life sometimes gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
-Maya Angelou

A Reason for the Season

“Only hang around people that are positive and make you feel good.  Anybody who doesn’t make you feel good, kick them to the curb.  And the earlier you start in your life, the better.  The minute anybody makes you feel weird and non-included, or not supported- you know- either beat it or tell them to beat it.”

People are put into our lives for a reason or a season, for a blessing or a lesson.  You’re in control of the people you let stay in your life.  Choose wisely.  Remember that people will hurt you, love you, inspire you, and help you.  People will lift you up and push you down.  Be a person that you’d want in your own life.  The only way to get better is to surround yourself with better people.  Better people better people.

Change is inevitable. Growth isn’t.  “All change is not growth, as all movement is not forward.” The greatest form of growth is progress. “Progress is impossible without change, and those who cannot change their minds cannot change anything.” Embrace the people who challenge you.  If you keep pushing those people away, you’ll never grow… those people are in your life to teach you.  Learn from them.

Be too busy being a good person to dislike anyone.  Be so busy loving that you have no time to spend hating.  “If you judge people, you have no time to love them.”  People are bound to disappoint you- you’ve got no control over that.  But you are in control of how you react to and handle that disappointment.  Learn.  Grow.

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Daily Reminder

“Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.”

-Mother Teresa

New Year, Same Old Me

I’m not going to vow to create a new me. That’s impossible… a waste of my time. I will not even try to recreate myself. Instead, I will better myself. I will grow. I will learn. I will laugh, cry, maybe punch a wall or two, and laugh more. I can’t be ME without everything I’ve been through, without each thought I’ve had, and each word I’ve spoken.

I will be thankful for what I already have and I will work hard for what I want. I will not waste my time wanting what others have. Envy comes from wanting something that isn’t yours.  But grief… grief comes from losing something you’ve already had. I will rejoice in what I have had, what I have, and what’s yet to come.

I will appreciate my struggles and acknowledge my blessings. I will learn to live my life by understanding my mistakes… by understanding how not to live them… by understanding how to live with them and not let them dictate future decisions. I will understand that “mistakes” are simply bad decisions I CHOSE to make, but of which got me to where I am today.

I will realize that we’re not all dealt the same hand of cards. I will play the best with what I’ve been dealt and be thankful that I was even given a hand at all. I will not  look around at others and think about how great they’ve got it; I will look at my life and acknowledge how great I’VE got it and be happy for those who’ve worked hard for what they’ve got. I’ll take lessons from those people.

I will confront the past I haven’t yet made peace with. I will stay close to the ones who lift me up and walk away from the ones who drag me down. Every person in my path was put there for a purpose, but sometimes that purpose has come and gone, and now they need to go, too.

I will try to say good-bye to relationships that cause more hurt than happiness… that take more than give. I will realize that sometimes it’s best to walk away with the memories of yesterday than it is to attempt to fight for those memories.  Too often we want to try to salvage what used to be, but sadly, don’t realize we’re polluting those memories with the unhappiness and struggles of today.

I will tell others how I feel. The only way to communicate is to find someone who can comprehend what you’re saying; the only way to be forgiven is to find someone who is willing to forgive. I will forgive. And mean it.

And I will be happy. Not because I truly believe that happiness is a choice and anyone can be happy in any situation, but because I will be genuinely, head-over-heels happy.

Turning Enemies into Friends

“Darkness cannot drive out darkness; only light can do that.  Hate cannot drive out hate;  only love can do that.”

mlk

“Now there is a final reason I think that Jesus says, “Love your enemies.” It is this: that love has within it a redemptive power. And there is a power there that eventually transforms individuals. Just keep being friendly to that person. Just keep loving them, and they can’t stand it too long. Oh, they react in many ways in the beginning. They react with guilt feelings, and sometimes they’ll hate you a little more at that transition period, but just keep loving them. And by the power of your love they will break down under the load. That’s love, you see. It is redemptive, and this is why Jesus says love. There’s something about love that builds up and is creative. There is something about hate that tears down and is destructive. So love your enemies.”

What are you Thankful for?

I’m thankful for the mini van my parents made me drive my senior year in high school because it makes me appreciate the car I drive now (haha!). I’m thankful FOR a car to drive, gas in my tank, and hearing my favorite song come on in the radio.

I’m thankful for the season in my life when my bank account has less than 3 digits. It made me appreciate hot, running water, a bed to sleep in at night, clothes on my back, a roof over my head, and food in my belly… and the fact that I even had a bank account.

I’m thankful for every fork in the road, every wrong turn I thought I’d made, and the realization that those lead me exactly where I’m supposed to be. I’m thankful for the people in my life who’ve hurt me. They’ve shown me to appreciate the ones who’ve loved me. I’m thankful for my rock bottom, for those times when I didn’t think I could pick myself back up and keep moving on, and for those nights I cried myself to sleep. I wouldn’t know how strong I really am without having known such weakness.

I’m thankful for my calling and having the opportunity to live my dream of being a therapist, and eventually a doctor, so that I can help others. (I’m even thankful for the debt I incurred going to law school because it made me realize what wasn’t my calling!) I’m thankful for a job teaching kids who make me laugh everytime I’m with them, teach me more about patience than I’ll ever need to know, and inspire me on a daily basis.

I’m thankful for a man who’s never left my side and taught me more lessons about myself than I ever thought possible. I’m thankful for parents who love me through my faults, love unconditionally, and teach me about life. I’m thankful for friends who listen to me–really listen–and don’t judge me for my flaws. I’m thankful for my fur babies who only know love and make me smile everyday.

And I’m thankful for a God who found me at my worst. I love my life He’s designed for me and I’m thankful for the realization that this life is the most beautiful thing I’ve ever known.

“Be thankful for what you have and you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” – O