Good Grief

The months after Madi was diagnosed with CP at the age of 9 months old were not pretty. I was much younger & forced into the unfamiliar world of special needs. I was sad, angry, disappointed & at the same time, relieved. Relieved because I knew something wasn't right but couldn't get anyone else to see it before she finally had that 1st recognizable seizure that lead to her diagnosis. I remember the stress getting to me so much one day that I had a physical reaction bad enough to necessitate an emergency appointment at my OBGYN office to make sure I wasn't pregnant & possibly miscarrying (I obviously was not as Madi is my youngest child). I couldn't see my regular OB - I ended up seeing the nurse practitioner instead. She checked me, confirmed I wasn't pregnant/miscarrying & asked me if there was anything stressful going on in my life. Poor thing opened up a can of worms she was not prepared to open. After I finished explaining what had been going on with Madi, she collected herself, picked her jaw up off the ground & said "Well no wonder your body is reacting this way - that is a HUGE amount of stress. We need to get you on some meds. I'm going to write you a prescription for Lexapro." I turned it down. I told her I didn't want meds. I hate meds. I'm the person that gets drowsy with tylenol. Anytime the doctor prescribes something to me, I usually ask for half the dose of whatever they want to give so I can function. Anyways, she ended the appointment with "please let us know if you change your mind or feel like you need help".

Well less than a year later, after dealing with a ton more seizures, hospital trips & the craziness that comes along with caring for a special needs child along with an advanced toddler running around, I had another appointment with my regular OB for the annual checkup. I decided before going into that appointment that I was going to ask for help...that I was ready for the medication offered to me before. I was SCARED & so very emotional. I broke down almost immediately after he entered the room. I explained everything that had been going on & told him I thought it might be a good idea to take them up on the meds offered before. He gave me a response that I did not expect. He said "No, you do not need meds. You need to grieve." I was shocked. I opened up & asked for help - which for people who know me well, you know I don't do this a lot (or easily). I worked up the courage to ask only to be turned down. I left that appointment more upset than when I arrived.

But you know what? He was right. I needed to grieve. I needed to grieve the loss of the child I had built up in my head. The one I imagined before she was born, the one I imagined being able to run around with her sister, being just like Cait but also her own person - what all parents do without realizing it when they have children. I needed to stop denying the grief & begin the acceptance process. Accepting Madi as she is & focusing on whatever I can do to give her the best life possible. Over the years my feelings towards that moment with the OB & his response have changed. I'm grateful for him not sugarcoating, for keeping it real & not wanting to throw meds at me to fix things.

What he didn't say but I've learned is that the grief never goes away. There is a small part of me that is still to this day - sad about her diagnosis. I don't think that will ever go away. It just doesn't take over our daily lives like it initially did. Just like anyone who grieves a loss - there are stages to it. Denial, anger, bargaining, depression & acceptance. The difference here is that there has been no passing on so I feel like I'm on a loop with the stages. Madi's still here & there are constant reminders of the differences between her & other children her age (& younger) - especially now that she is so much older. It has been hard over the years to watch other children grow - to do things so easily that Madi has to work SO hard to do, to watch babies that are so much younger be able to crawl, walk, roll over, eat, run, etc. with no problems. It doesn't mean that I don't celebrate these accomplishments with my friends & loved ones or that I don't want to be a part of it - I feel honored to be able to witness it all. There are days where it's harder to watch (usually on days where Madi is struggling) - but I am always so proud of each kiddo & their individual accomplishments. I'm grateful for the people in our lives who don't shield their kiddos & their accomplishments from us because they're worried it'll offend us or something. While it's hard for ME, it doesn't mean that should make YOU feel bad.

I've been thinking about the grief a lot more recently as we've been working through the issues with Madi's eyes & her vision. I find myself deep in the grieving process again similarly as when she was very first diagnosed almost 13 years ago. I went through a smaller bout of grieving with the trach & again with ostomy/belly surgeries. Anytime something major happens, it hits me a bit but I bounce back quickly. This time though? It feels different. It's more serious. We don't know why this has happened. There are theories being thrown around but we just don't know. Just like when she was a baby, I knew something was wrong...I asked every single doctor she has about her eyes, took her to multiple eye appointments, I pushed & I asked questions...I wouldn't let it go. I made sure to advocate for her the way I've learned to over the years - sticking with my gut instinct & again, here we are stunned by another diagnosis because they couldn't see what I saw until it was too late. Now she has lost vision in one eye & the vision in her other eye is different than before. We're unsure of how much, if anything, she can see out of that eye. Her beautiful eyes have changed forever. Those beautiful eyes that I swear she could use to communicate with me - she can't do that anymore. Those big blue eyes are no longer the same color. Even her eyelashes have changed. I swear part of the spark that make Madi the person she is...has been dulled by this. Her attitude is a bit different. She seems more serious, more tired & I cannot begin to imagine what she must be thinking or feeling. It must be so scary to lose your vision. Then to be in her position where she can't communicate that to anyone.

It is heartbreaking to think about. It is heartbreaking to watch. My 13 year old who required glasses for being far sighted, for an astigmatism (which we were told was getting better) & suffered from nystagmus (eye shaking) & that's it for almost 13 years - is now partially blind out of nowhere. Try to process that. Think about your normal, typically developing child - one day they're living life normally & then one day they are blind. While Madi isn't society's definition of "normal" - this is what I feel has happened to her. Just because we have dealt with so much over her lifetime...it doesn't mean I was more prepared for this or that it makes me stronger than anyone else. I never expected this. It was never communicated to me that this was a concern or that it could happen. Just like anyone else would be...I am shocked, saddened, overwhelmed, confused & a big list of other emotions. I can't remember a day since the glaucoma became apparent & confirmed that I haven't cried over this. It sucks. It's unfair. It's hard to watch her struggle to look for things that she could see easily before. To watch this determined young lady who already has to work so hard in everything she does...have to work even harder than before to do something so simple to everyone else. It is absolutely heartbreaking to walk into a room, have her looking right at me & not respond to my presence until I say something...whereas before? I would walk into a room & as soon as she saw me, her entire body would react & she would say my name over & over. That might not seem like much, but that moment made my day every morning. Seeing that smile when she'd see me after several hours of being apart...it's enough to make you feel happy no matter what kind of day/night you've had.

She will be ok. I know that. I will always make sure that she has the best life I can give her. No matter what. I will find ways for her to enjoy the things she loves regardless of her visual status. We will adapt everything. At home, at school, all over the place wherever we can... We will learn new ways to work with her & be thrown into yet another unfamiliar world that I'm sure we will get comfortable with at some point. Things will continue to move forward. Things will get easier over time. I will try to get to the bottom of the why/how this happened.

For now though, it's time to finish this loop of grief.