A four letter word, heavy with so much expectation.
The dictionary defines hope as:
“a feeling of expectation and desire for a certain thing to happen.”
“to want something to happen or to be the case.”
I had always hoped that my children would be safe and healthy.
I had always hoped that we would make it through life without tragedy.
I had hoped my children would be saved from pain and misery.
I had hoped their childhoods would be fun, carefree, and full of joy.
I hoped that Maddi would be cured after one round of treatment, and we could go back to our normal lives.
I’ve learned, that sometimes that thing that is supposed to inspire and encourage you to go on, is also the same thing that can break your heart.
In this case, the hope I had for Maddi, the expectations I had for her childhood, broke my heart.
It’s been a difficult lesson for me to learn that things just don’t turn out the way we want them to, simply because we want them to. I feel like I’ve done everything within my power to protect Maddilyn from hurt, and yet, I failed; even if it wasn’t my fault. I’ve been struggling with this, as I can imagine any parent with a child who is hurt, sick, traumatized, or worse, gone, would. In my logical adult brain, I know that this is not my fault. I know nothing Jason or I did, or didn’t do, caused this. Yet, I can’t help but feel responsible. We call the shots when it comes to her treatment. Every poke, every test, every medicine, is because we agree to them. In the quiet moments of my day, I can’t help but run through all the ways I have failed her. I yelled too much. I made her do too many chores. I played on my phone too much. I didn’t play with her enough. I didn’t expose her to enough kids. All these things, silly, I know, but I still can’t shake the feeling of responsibility. Every decision for her treatment is heavy on our shoulders, and I’m terrified of making the wrong decision.
When we were hospitalized a few weeks ago, one of the doctors mentioned we should apply for the Make a Wish Foundation. At the time, I didn’t really think much of it. Out of curiosity, I googled it the other day, and looked at the eligibility requirements. There was only one.
“must be receiving treatment for a life threatening medical condition.”
“Life threatening medical condition.” Not something I ever thought I would even have to consider. Is NMDAR Encephalitis a life threatening condition?
Although anti-NMDA receptor encephalitis is a serious life-threatening disease, the majority of patients who receive prompt diagnosis and treatment go on to make a good recovery.
Recovery is generally slow and may occur over months or even years. The recovery process is often complicated by many ups and downs, and by fears of relapse or re-emergence of symptoms. It is important during this period that the patient continues to be closely monitored by their physician. Even after recovery is well-established, routine medical assessments remain very important, including repeat imaging to ensure that no tumour is found. Unfortunately, not all people affected by anti-NMDA receptor encephalitis recover.
The disease can be fatal, with most patients dying due to cardiac arrest (stopping of the heart), or from complications associated with long stays in hospitals and the use of powerful immune suppressing medications (which makes people more susceptible to serious infections). Some patients may not recover completely, and friends and family may notice changes in the patient’s personality or some other aspect that is different from before the onset of illness. (quoted from www.antinmdafoundation.org)
Maddilyn has a life threatening illness. Her treatments are scary and complicated. The days that we see bits and pieces of her personality shining through, are sucker punches to the gut, because its that heart breaking hope that maybe she’s getting better, but then we are quickly reminded of how horrible and life robbing this illness is.
There might be a day where Maddi is free of the NMDAR antibodies and she is in “remission,” but her life, and our life with never be the same. The sweet innocence of ignorance is forever gone, for both her and Jason and I. We will always be the parent of a child with special needs.There will never be a day that I will be free of worry, or watching for any sign of a relapse. All of these feelings are so new and raw, because we are right in the height of treating her illness, and while yes, she is making progress every day, she is still so far from where she needs to be.
Tomorrow we check into the hospital for a second line treatment of Rituximab. I’ve read countless patient recounts of using Rituximab for treating NMDAR Encephalitis, and although I feel anxious, I have hope. I have hope that this will be the treatment to eradicate the antibodies and put Maddi into remission.
I’m really scared.
I’m mostly scared to have hope, because so far, hope has broken my heart.