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 3rd 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.
