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I’m trying my best but I still make mistakes

I am trying my best but I make mistakes. Sometimes big ones. Big ones that can endanger my child. That could kill her even. And that’s ok. I’m still a good parent. And you are too.

“It’s ok.”

“We all make mistakes.””

“You’re only human.”

“We’ve all done it.”

None of those phrases matter in the moment that your heart stops and you frantically try to remember- did I give her her meds this morning? And realize- holy crap. I forgot to give my child her medicine. The medicine that keeps her alive.

Sleep deprivation, stress, depression. They all lead to memory issues. Plus add in that this medicine must be spaced 2 hours from that medicine and this one can only be taken with food but that one can’t be taken within 2 hours of consuming dairy. Sigh. No matter how many alarms you set. No matter how foolproof you think your system. You will forget a dose. This will happen at some point. (Unless you’re SuperMom. In which case I would whip you up a crafty cape but you can do it better so have at it. While you’re at it can you make some keto treats? I’m too tired)

You will judge yourself. You will waffle between fear and anger. You will be afraid that you have just put your child in a situation that could kill them. And it would be your fault. That’s how you will feel. That’s all true. It’s also ok.

Beyond the shock, fear and anger is the what do I do? Do I give it now? Skip it altogether? I am not a Dr. I am not capable of handing out medical advice. I know what our epilepsy specialist advises. (Because yes. I have forgotten. More than once. Told you you’re not alone.) But knowing that it will happen at some point I suggest you contact your neuro and have a plan if you don’t already. It will be one less thing you’ll have to do when you’re busy beating yourself over the head with guilt.

And that guilt will stay with you over the next several days, or if you’re like me, even longer. Every seizure you will wonder could that one be my fault? Was it longer than usual? Stronger? Did I do that to her? I can’t stop you from feeling these things, hell, I can’t stop myself from feeling them. But I can tell you you’re not alone. This is one of the most frequent calls for help I see in online epilepsy groups.

“We all make mistakes.”
“You’re only human.”
“We’ve all done it.”
“You are not a bad parent.”

Now. If I could just listen to myself. (And no. I didn’t forget today because most days you remember. When was the last time you gave yourself credit for all of the times you remembered? Never? Yeah. Me neither.)

Emotional Avalanche Ahead

Avalanche-

Since I live in New England where we are buried in several feet of snow and expecting more (seriously Mother Nature?! More??!!) I could be referring to an actual, literal Avalanche. But I’m not. I’m referring to the Avalanche of emotion that special needs parents go through on a daily, sometimes hourly, basis.

I heard once that all special needs parents have PTSD without ever getting to the P because it’s never over. I so often refer to our life as some variation of Groundhog Day.

Some moments it’s the fear that comes crashing down and robs my lungs of the ability to breathe. I, and many SN parents, literally fear for our children’s lives. Whether their diagnosis is seizures or a different neurological disorder, or a mito disorder or diabetes, we really must face that our children are at much higher risk of death. And while I believe that it’s important to acknowledge this, because knowledge is power, I also believe that it’s important not to dwell here. I do not want to spend the days that I DO have with my child too afraid to live every moment with her. That doesn’t mean that I don’t have moments where it smacks me in the face like a ton of bricks Because it does. Regularly. (like when she’s convulsing and blue and I feel like I’m being forced to see what she would look like in death…again). But I let myself acknowledge it for the moment and then move on. I try not to judge myself for those moments of what I perceive as weakness but I’m not always able to follow my own advice.

Usually accompanying the fear for me is sadness. More specifically grief. It’s a process, probably an ongoing, never ending process, of grieving every missed milestone. Every lost skill. Every regression. Every seizure. Every missed gymnastics class. The childhood that I envisioned for her. The parent I thought I’d be. The experiences and traveling I thought our family would have. But again. While I acknowledge that I’m grieving and sad, sometimes heavily and darkly so, I fight through it. Though I allow myself to give it a moment because those dreams deserve to be acknowledged too.

So many of my fellow SN Moms express anger. I read a great quote (I’m a quote addict! What? You didn’t know. We must not be FB friends yet!) that said “Anger is just sad’s bodyguard”. I think I’m too exhausted to have a bodyguard so I missed this step. Or it’s part of the grieving process that I haven’t hit yet. The one thing I never let myself indulge in is the why me’s. It’s not productive. It can’t help you. If you have them you are only hurting you. Please let them go.

The one thing that consumes me every minute of every day is exhaustion. I live in a perpetual state of tension and awareness that exhausts me to my emotional limits. Factor in the fact that Haley has had nocturnal seizures every single night for at least 2 years and it’s a recipe for bawling in your coffee over nothing and everything all at once. And I have insomnia. Not the oh I hard a hard time getting to sleep last night kind, the kind where I desperately crave sleep and the harder I chase it the further away it seems. But mostly it’s because I’m afraid to sleep too soundly and miss a seizure, THE seizure, and despite the fact that we have a baby monitor, an Emfit movement alarm and a service dog, I still am afraid. (Remember what started my emotional Avalanche. Fear. They’re all intertwined) And so I have become the person I said I’d never be; groping for coffee in desperation just to get through one more hour before I rinse and repeat.

Mixed into my Avalanche is shame. Not of Haley. Not ever. Of myself. Of my inadequacies. Of all that I haven’t or can’t do for her. Ashamed of the exhausted, fearful, sad, overwhelmed Mom that I have become. But part of that is my grieving process (told you they’re all intertwined!) and grieving the Mom I thought I’d be. This may not be in every SN parents Avalanche. As parallel as our paths may be our journeys and emotions are as unique as our children.

And when the Avalanche begins with whichever emotion sets it off I ride it from one to the next. Sometimes in moments, sometimes in days. And I claw my way out to find a new emotion in my Avalanche. Hope. Hope for Haley. Hope that someday even if she still has epilepsy that her quality of life will improve. I have hope every time she surprises me with a new word, or skill. And when she teaches me to never give up. She is teaching me to believe in myself and have confidence and she gives me hope that she will manage to have those as well despite navigating her own emotional and physical avalanches.

And through my hope I find purpose. A sole minded focus and intention on being someone who will HELP others who are struggling rather than just be a bystander. I can bend all of these emotions to fuel my purpose. I can help others, hopefully including Haley. I can do it with my voice. By speaking up and sharing our story even when it’s hard. Even though it opens us up to a level of judgement that can sometimes trigger my emotional Avalanche all over again. It’s worth it. And I can do it on my actions. (Watch for a seizing hope announcement soon!)

And in my purpose I find joy. When I kiss her forehead after a seizure and she wraps her arm around me neck in a death squeeze. I am overjoyed that she reaches for me with confidence that I’ll be there. Because I will. Every step of the way. Even as we slide along the Avalanche. Together.

I am no hero

I am no hero…

1.Please stop calling me strong. I am not strong. I can’t make it 24 hours without crying. I can’t fake a smile convincingly. Not only am I not strong, I’m not even strong enough to make a pretense of being strong. Nor do I want to have to. I value authentic pain over false pride any day.

2.Please don’t ask me a question that you don’t want to know the answer to. I broke down in public when I ran into someone I hadn’t seen in awhile and they asked how Haley was doing. I never know if people want the honest answer or the polite answer. I never know which to use. It’s like an internal debate every time I have to answer this seemingly innocuous question.

3.Please, for the love of all things holy, please don’t tell me everything happens for a reason. There is no reason compelling enough to watch my daughter endure this suffering on a daily basis. None. Nada. Zilch.

4.Please stop saying God only gives us what we can handle. I’m quite certain most of us have at one point or another felt that he/she waaaaaay overestimated our abilities. I just happen to live in a perpetual state of that.

5.Please stop telling me miracles happen every day. I don’t want to acknowledge that the only thing left is a miracle. Even though it’s true. Hearing that is like a knife wound to my heart- Every. Single. Time.

6. Please stop saying that you don’t know how I do it. Frankly, you would do it too. The thing about epilepsy is that we didn’t get a choice.

7.Please don’t give up on me. I know some days I can’t answer the phone because the tears in my voice are too thick to speak through. Please call anyway. I know I’m juggling a million appointments and obligations and holy cow! Christmas is in a few weeks! Please ask me out for coffee anyway.

8.Please don’t take it personally if I can’t answer your questions or if I answer them too thoroughly. Sometimes I can’t talk or think about anything other than Haley and I’m happy to expound on everything I think I know about epilepsy and service dogs and cannabis. And other days I feel like if I have to answer the same question I’ve answered a million times again my head will explode. If I can’t give you the answer you are looking for, feel free to ask me again another time.

9.Please don’t ask what I need or offer to help me. My answer will always be nothing/no thank you. If you see I need help with something please go ahead and do it. I will be immensely embarrassed that you saw my weakness but I will be humbly and incredibly grateful too. Other people are wonderfully able to accept and ask for help. I am not one of those highly evolved creatures.

The cliches and the platitudes, they are harder than silence. Silence at least conveys the gravity of Haley’s struggles. Let silence be your answer when there is nothing to say. I promise I’m ok with that. And don’t be surprised if someday you ask an innocent How are you? And I can’t hold it together enough to answer. I am broken right now. I’m held together with tape because I’m too tired to find glue and the cracks keep getting wider. And every day I resolve to be better, to do better, to shake the sorrow. And every day I fail a little more.

Every day that Haley lives, I celebrate that she’s alive while simultaneously mourning that she’s had to live one more day without access to the medicine that could be her miracle. After all, miracles happen right? (See #5)

The Anniversaries We Don’t Want to Celebrate

Haley has been having a rough time. It’s no secret. Yesterday she was too tired to make it through the day at school. So we declared today a day off from school and started her morning with a (Low Glycemic Index Diet therapy approved) cupcake with a candle and sang Happy Wednesday.

But in reality today wasn’t just any Wednesday. It’s the anniversary of the day she was admitted last year to MGH for uncontrollable seizures. I remember clearly how devastated and afraid I was like it was yesterday. I was afraid because we had been in this same position 2 years prior with disastrous results that culminated in a 14 day coma and severe regressions. And we knew that Haley, even a year ago was out of options. We were lobbying our Dr’s hard for medical marijuana but with the program in limbo there was no access. A year later we are in exactly the same position. The lack of progress in the implementation of this program, the fact that no one in this state has shown any urgency or compassion for patients infuriates me. And Haley continues to suffer daily because of it.

If Haley’s seizures continue to escalate and she needs to be admitted again but without options left, where does that leave us? I’m afraid we may find out.

We all have anniversaries, dates, seared in our minds of events that we don’t want to celebrate. First seizure, hospitalizations, treatments, surgeries, ambulance rides, long seizures, intubations, sedations, tests. I knew this anniversary was coming. I thought I was prepared, but seeing the statuses and photos in my TimeHop app this morning reminded me that even when we prepare, we cannot predict how we will feel when these anniversaries come.

So this is an anniversary that we don’t want to celebrate. Instead we will light a candle and sing. Happy Wednesday everyone.

Welcome

Welcome to my blog! This is where I hope to chronicle my journey as a single special needs Mom. This is my little corner of the internet to share my life lessons and raw feelings sometimes in real time, sometimes upon reflection.

Either way grab a cup of coffee, expect it to be flavored with salty tears at some point, and let’s share this brutal, beautiful life.

Open hearts, open minds…