Grieving the Loss of Normalcy…Part 1

Normal: Conforming to a standard; usual, typical or expected.

Even reading the definition of normal makes my stomach flip and churn. For me the words “typical or expected” cut the deepest. After Hattie was born, I was at war with myself and in denial that Hattie was not healthy “normal” child we had waited 37weeks to meet. I could not bring myself to admit that she was NOT typical or usual. Each of those first few months with her, I fought EVERY thought in me screaming…SOMETHING’S NOT RIGHT…because of fear of not conforming to the standard. When all my deepest gut feelings were confirmed, I completely withdrew into myself. How could this be, How do I process this, How do I look at her without crying…How do I look at her without grieving the loss of the “normal” life I had dreamed for her since her conception? How do I explain to her sisters that she is not going to be “like them”? So many unknowns, so much loss of control. Then I got angry with the Lord….How could you place me in this position of uncertainty. How could you take her future from her. How could He not make her perfect. How does a good God allow things like this to happen? I remember a drive to work one night where I was talking…ok crying…to my dad about how I was so sad about Hattie and how I didn’t know How to process all of this. I felt alone but I couldn’t even speak my feelings out loud. My dad graciously told me “Its normal to grieve the loss of normalcy”

Bam. That was it. My emotions/uncertainties finally became clear to me. I was grieving the loss of the normal life Hattie would never know. I was going through the 7 stages of grief for Hattie’s normal life and didn’t even realize it. How could I be grieving something that I never had or actually lost? Some of you might have never heard of these “stages of grief” but it is a model that I see a lot of in Medicine. Depending on the source, there are 5 or 7 different stages of grief as listed below.

1. Denial and Isolation 1. Shock and Denial

2. Anger 2. Pain and Guilt

3. Bargaining 3. Anger and Bargaining

4. Depression 4. Depression

5. Acceptance 5. The upward turn

6. Reconstruction & working through

7. Acceptance and Hope

These stages apply to losses and pain in life in various scenarios. Grief is different for each person. Some do not follow a certain order. Some circle round and round in the first three stages. But the hope is that to get to healing, one takes each situation and walks through each stage to be able to move forward. I don’t think moving ON is the right term because we never leave the thing we are grieving, it is a part of our story and defines who we are. It’s the hopeful choices and steps we take forward that gets us to the next chapter of our story. It defines your attitude and your choices moving forward. It makes YOU in control of your thoughts and attitude toward the battle to come.

Now I believe that you can go through these various stages simultaneously (as I included in the diagram chart above). When we first started on this journey with our Hattie K, I think I circled around through them all a million or so times. Some days I would feel like I was on the upward turn but would sink back into depression because triggers are the worst. Triggers are unpredictable events or reminders of the thing we are grieving. Somedays it would spin me right back into isolation – It was overwhelming for me to be around other childrens Hatties age because it was this huge elephant in the room of how she was different. Its taken almost 3 years for me to get to the acceptance and HOPE stage on a daily basis. Its so important though that for friends to come along side those isolating themselves and encourage. Like I had mentioned in the “loving special needs family” blog topic – invite us again. Sometimes it’s a bad day – sometimes we might be in the depression stage but we will move through! We will come back into the light…some days are just harder than others.

I plan to make this post a series “in the loss of normalcy” (only because 7 stages might keep you reading all day). I am going to walk through the 7 stages of loss that were the biggest for myself in this journey with Hattie. This week I will get through Stages 1 and 2.

Stage 1: Shock and Denial

Shock provides emotional protection from being overwhelmed all at once. When I was first told Hattie had hypotonia and we needed to rule out all the life-threatening things – I was numb. In medicine you create an innate ability to turn off the emotional “switch” as to separate yourself from the overwhelming losses you see and encounter everyday. It’s a coping mechanism that for me can sometimes hinder me more than help me but allows me to move forward to the next patient and focus on everything else but what has an emotional hold on my heart. I had been in denial of the truth about Hattie from the very beginning – often telling myself “shes just a slow starter” or “shes probably just struggling with tongue tie issues”. I researched quietly/secretly of what might be “wrong” with Hattie and then would stop reading half-way through not able to fully comprehend Hattie as being different. When I was assured that it wasn’t just me noticing but she truly was not progressing by our physician, I flipped that emotional switch over so quickly. I went into robotic motion and withdrew all my emotions. I built a compartment with an impenetrable barrier around the deep wounds my heart and soul were feeling. I was strong and I was not the emotional type – I kept telling myself. No one could see me cry except James. I had to put a brave face on for my girls because my terrified face was too much. I couldn’t let anyone see that internally I was falling into pieces. The uncertainty and lack of control sent my already anxious nature into overdrive – I started to have panic attacks. So when it got to hard, I just turned it off. Somedays I want to say that I’m not ever still in this place but that would not be the truth and THAT’S OK. When someone is going through this phase, its ok for them to be a robot some because its probably taking ever ounce of willpower just to take one step forward, to get out of bed, to take a shower. Let them live there for a minute. Processing takes time. I don’t know when exactly I moved into the next stage or if I kind of went there simultaneously but I knew I couldn’t shut off the emotions switch forever. I had to talk about it. I had to speak to my husband and my family. I had to be strong for Hattie.

Stage 2: Pain and Guilt

The pain. The pain at times that you feel FOR your child cuts to your core. I was supposed to protect Hattie. Did I work too hard during her pregnancy? Did I do something to change her genetic code in utero? Was there a way to know about Hattie before she was born to save her pain and unnecessary pokes/prodding/labs? I’m a medical person – HOW did I not know this before?? I thought about Hattie graduating from high school, going off to college, getting married, meeting the man of her dreams and my heart breaks for her. The whelp in your throat is unstoppable. But truth is that the pain is all mine – Hattie was created for a special purpose and she will never know these losses. She will only know the pains that come as a cost of her genetic condition not the pains of a life not lived as I expected or anticipated.

The normal mom guilt that each of us feel after we birth our children was magnified 100x. I felt guilt about my other children because I was having to spend so much time focusing on Hattie and what could be wrong with her. I was nursing every hour. Literally for months in EVERY picture I’m nursing Hattie. The devil would get into my deepest of fears and occasionally would speak such deep untruths that I felt unhinged. In my darkest of thoughts – I knew the girls would resent Hattie and they would resent me for having to always be with Hattie. Hattie had taken their happy mom from them and given this broken, bits and pieces of a mom. I hated the pain but then kind of liked to wallow in it at the same time. I could stay in the place and feel something instead of lingering in the shock phase of feeling NOTHING. It was easy to feel pain and people where OK with me staying in this painful place. Encouraging me to stay there unknowingly by again repeating I’m so sorry. But I knew I had to fight for Hattie – Hattie needed more than my pain and my guilt was getting her no where fast.

If you are still reading, yall are amazing. Tune in next week for more on the Stages I have walked through in this journey of Hatties diagnosis and her “loss of normalcy.”

Blessings – Kaet