Grief and guilt - Life with a child with special needs.

Disclaimer- this is my personal blog. By no means am I trying to trivialize someone else’s loss. The purpose of this entry is to reflect upon the emotions of grief and how they affect me and my family. 

A dear friend of mine lost her 3 beautiful triplets at 21 weeks pregnant. 2 little girls and 1 little boy. It is normal and appropriate for me to be sad, heartbroken, and wanting to be there and help out the grieving family.  They are sweet friends of mine and I loved being with my friend during her first few weeks of pregnancy to talk her though the "morning" sickness and rejoice in her excitement. Daydreaming about nursery colors, furniture, and baby cuddles is what us new young moms love doing. I gave her some of my maternity clothes and joked with her about just going ahead and rocking a Mumu because those 3 little ones are going to make her belly grow, FAST. Rightfully, I should be sad for my friend and wishing things were different for her; praying for their family and being supportive and providing comfort when I can.

Inappropriate behavior is sobbing off and on for a week, crying and lying awake until the wee hours of the morning, and wondering if I was going to make it through my work day without getting emotional. I cried through all of my showers and my entire drive home, everyday since she was admitted to the hospital. It’s the only times I have when I am alone. I am even crying now just talking about crying.

This doesn’t come off to me as normal sadness for a friend’s loss. Even Case commented about it, when he comments, I know it is bad. Then one night, it all came out. To me, Case had seemed distant for a few days, so I confronted him about it. I asked him, “What the heck is wrong with you.” He fired back, “What is wrong with you?” I responded, “Obviously I am upset and want to talk about it”. He said, “I have noticed, tell me about it.” I started, “Well its just that this is so unfair to my friend. I can’t believe they have to go through this, I am so sad for her they are the best and don’t deserve this pain suffering and anger, UGH! WHY!  I can’t imagine Case, I can’t imagine….what if this were us….what if this were Charlotte. I don’t want them to be angry like me. They are too good to be angry like me.” 

Communication pretty much stopped there because I wasn’t able to finish between all the hitching I was doing.

What the heck? Was I angry, and why? What did any of this have to do with Charlotte? These were my own words and even I was confused.

In that moment it literally hit me like a brick wall and I just sat there sobbing in front of my husband. I got it. For months I had been grieving for my own loss and I didn’t even know it. I think I probably “knew” it but I wouldn’t allow myself to know it. Following this epiphany, I did some research and found a name for what I was doing, it is called “disenfranchised grieving” and it is real common among parents of special needs kids. Apparently here is the deal in a super short summary (it is actually REALLY complicated)and I am a pretty good example. LOL. Just read on....

 Parents with special needs children often grieve the loss of the “typical” child that we had daydreamed about all during our pregnancy. After all, who plans for a child with special needs? It’s not part of the plan and our dreams, hopes, and plan literally dies. The grief makes sense when you think about it, often parents who are hopeful for a certain gender child go through something similar; but here is where it gets complicated and different. If parents with children of special needs actually admit to grieving (rarely happens and this is why) they are often met with statements like, “It could be worse”, or “at least you can still hold your children and that is more than some parents can say”. This is why special needs parents rarely admit to grief, because you are right, it could be worse and at least we can still hug and hold our kids at night. But you have not cured our grief, as a matter of fact, you just complicated it. Now, I feel guilty on top of my grief. How horrible of a mother am I to not only grieve the loss of my “typical” child but to also be unappreciative of the gift I have. I am a horrible mom and worse, a horrible Christian for not appreciating God’s gift. Yes, I get that things could be worse, but it doesn’t make me feel any better either.  

 I remember being in denial and thinking that everything was over with when we left Le Bonheur Children’s Hospital. Seizures are a thing of the past.  We have a diagnosis and meds, its over. We can go on to being “normal”. 

I remember feeling isolated and seeking out parents in similar situations. 

I remember feelings of anger at my friends with “typical” children. In my mind, they had no clue what living with this Epilepsy and SUDEP fear was like and the day in and day out struggle and discipline needed to keep a child seizure free. It IS really hard. I can't miss C's meds by even an half hour or she will have smaller seizures.“THEY” should appreciate their children more (hypocritical right?). I remember being very angry, a lot. 

I remember feelings of sad and helplessness as I held my daughter through her seizures, and I cried. There wasn’t anything I could do. I could yammer on this soapbox for hours……..I have digressed.

Growing up with my Aunt Dale with Downs Syndrome, I thought I knew what it was like to be a parent to a child with special needs from my grandmother’s experience. Key word here, “thought”. Wow, you have no clue until you are there in the thick of it. I never saw grief in my grandparents but I am sure it was there, maybe I just actually hope it was there. I sure wish Daddy Nub were alive, he would tell me like it was. Momma June is a good resource, but she often paints too rosy of a picture.

All of this is hindsight, I had no clue that these were my emotions and they are characteristic of grief. I had no clue until now. It is appropriate for me to be sad and grieving for my friend, it isn’t appropriate for me to find myself in a full on depression crying for days. At least now I know, and knowing is half the battle.

Being introverted, I have deep dialogs with myself, in my head. What you read here is only a crumb of what is pooling around in my head. It took me a few days of talking in my head to figure this all out, and I then followed it up with research. Could I somehow actually be grieving for a child who is still living? Yes, and it isn't uncommon. From the research I found, it looks like I may be struggling with this for the rest of Charlotte’s life. Here is where it gets sad for special needs parents. When most people grieve, they tend to cope better with it as time passes. It may still hurt and be sad, but 20 years later isn’t going to be exactly like day 1. For special needs parents, 20 years later can be exactly like day 1. Changes in their children’s condition or life changes presenting new challenges to face with their condition are all vehicles that open their grief back up. For me personally, every seizure pulls my old scab back off and makes it bleed again. I HATE telling C “no” every time she points at a swimming pool and says, “puul puul”. It feels like lots of little paper cuts on my heart. 

Even from other parents of children with special needs I hear things like, “it will get better, just have to live day to day”.  I get that too, but you have been living a steady state with your child’s diagnosis. I have been told to wait with baited breath until my child is 2 and HOPEFULLY she will be normal. Wishing my daughter’s infancy and toddler years away is not what I was hoping for, nor can I start to try to come to some kind of resolution to cope with C’s condition because I am waiting until her 3^rd birthday before I know if she is going to be “typical” or not.  

Then guilt. Did I mention guilt was involved? If I didn’t let me say it again, guilt. Lots of guilt. There is the guilt that we feel this way when others have a worse condition. It feels awful. 

It is a relief to be able to label my feelings, but it doesn’t make them easily go away. Tomorrow, I am going to go show my love and support to my dear friend as she lays her sweet triplets to rest. Tomorrow morning I will get up, feed my daughter breakfast, medicate her, play with her, watch cartoons with her, shower and get ready to go to the service. Charlotte will be spending a few hours with her papaw while Case and I attend the service.  I will feel sad, very sad and extremely guilty. Here I am complaining about my grief of my living daughter when my dear friend as to lay her babies to rest. To make matters worse, my daughter has been doing well. A few seizures, but no developmental delays.  If you never looked at her genetic sequence, or saw her have a seizure, you would say she was a normal healthy child (this compounds my guilt). I have no reasons to grieve, but I can’t help the way I feel either. While I still feel very sad, my friends who have experienced great loss have been an amazing inspiration to me. 

 My dear friends have been such an inspiration with the way that they have been dealing with the grief of their children’s passing. Their amazing faith has been an inspiration. They have helped me to lean more on “God’s plan” and less on “Gena’s plan”. It is still hard, but realizing and beginning to come to terms and accept my feelings is a good start. Both myself, and my friends have a very long road to hoe, but we are never alone and God is always by our side.