Rainbow After A Storm: The Greiving Process of Having a Special Needs Child

Rainbow After a Storm 

The Grieving Process Of Having A Special Needs Child 

 “It is understood that the beauty of a rainbow does not negate the ravages of any storm. When a rainbow appears, it does not mean the storm never happened or that we are not still dealing with it’s aftermath. It means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover, but the rainbow provides a counterbalance of color, energy, and hope.” 
-Author Unknown 

I’ve already outlined in detail the diagnosis process we went through with Sage, but those topics are missing a significant aspect that is still ongoing for us and many people with Special Needs children. A process that I am still personally going though, sometimes daily: The Grieving Process. The five stages of Greif are: Denial, Anger, Bargaining, Depression, and Acceptance.

 

Clover has always been a very bright, outgoing, and caring girl, even from a very young age. By the time she was one year old I felt she was already such a grown-up big girl and I wanted to start tying for another baby. I wanted to give her a sibling, a friend, that she could grow up with and make memories with throughout their whole lives. When she was 18 months old, we found out we were pregnant, and we were so excited to be growing our little family. I had a weird feeling throughout my pregnancy, but I just chalked it up to being a different pregnancy than the first time around. The first few months I had weird thoughts and feeling that I might lose the baby even though there were no physical signs of that happening. The whole of the pregnancy was generally uneventful and smooth.

 

We planned to do a scheduled repeat c-section but the day I gave birth to Sage I was diagnosed with Pre-eclampsia and had to move up the scheduled c-section. There were no significant complications during birth, but afterwards she was breathing a bit weird. After they monitored her, she seemed fine. We were able to go home after only being at the hospital for less than 48 hours! I found out later that Brandon felt that something was different from the moment Sage was born, he just had a feeling that she was going to be different than we were expecting. He didn’t tell me this until after she was 2 years old. When I asked him why he didn’t mention it he said, “You had just given birth and then only months later we started getting all her diagnoses and you had enough on your plate. Maybe that is why I took everything so much better than you, because I already had a suspicion that she was different. I just didn’t know what it meant when she was born.”

 

Clover loved Sage before she was even born! She would talk to my belly, kiss it, hug it, and was so excited to be a big sister. After Sage was born, Clover doted on her and sang to her often. She wanted to hold the baby all the time and was the sweetest thing ever! Everything started exactly how I had always hoped for my girls. Clover was the only one who could get a smile out of Sage for the longest time. They were two peas in a pod, and I loved the relationship they were building, even from day one.

 

When Sage was first diagnosed with Epilepsy in August 2021, it was a big blow to what I imagined our lives would look like. But I still had hope that she would still develop and grow with her peers, that she would meet the milestones and grow like Clover had. Up until this point she had been meeting the significant milestones for babies her age. Then a month later we got her PVNH diagnosis and during that conversation with our neurologist he mentioned that she was at high risk of Cerebral Palsy (a term I recognized) and I was crushed. My mind went to the worst possible outcome, and I was devastated. All my hopes for my little girl, that she would live a “normal” life were obliterated. It felt like all my hope that Clover would be able to have the little best friend and be able to play with her sister like normal kids, were stolen away. In an instant, with a single conversation, all my expectations for how our lives would be were taken from me.

 

In the other article I posted about getting that PVNH diagnosis I said this: “I am the one who usually communicates with doctors, but when our neurologist told us some of the risks, that she would most likely have Cerebral Palsy, delayed development, and a myriad of other struggles throughout her life, I shut down. I handed the phone to Brandon and just couldn’t talk. My heart was pounding, and I felt the weight of it all crushing me. I honestly don’t remember what else Brandon and the neruo talked about after that, I was in a haze of despair. Everything I had pictured for Sage, the life I saw for us was crushed in an instant. Clover wouldn’t have a normal sister she could play with and grow up being best friends. Sage would continue to struggle with basic things her whole life. And I would be a forever caretaker…

 

As soon as we hung up the phone, I broke down and started crying. I just handed Sage to Brandon and went into the other room; I didn’t want to fall apart like I was and especially didn’t want anyone to see me like that. I went into our girl’s room and hid in the closet and just sobbed. I was only in there for a short time when I heard Clover’s little voice calling for me. She found me in the closet and asked why I was sad, then just hugged me really tight and let me cry on her shoulder. Clover was only 2.5 years old, and she already was such an amazing girl and knew how to comfort me.

 

I was so devastated and felt that Sage’s whole future, our family’s future, was taken from us in one fell swoop. I kept falling apart the rest of the evening, so Brandon told me to go take a shower. While I was in the shower, I cried so hard I couldn’t breathe, and I prayed harder than I ever have before. I BEGGED God to take this from Sage, I begged “Heavenly Father, please just help her” and I had a thought, clearly not from me…. “I am helping her; I gave her you”. I had never felt so inadequate in my whole life. I was given this unique baby with so many challenges, and somehow, I needed to be strong for her.”

 

I honestly wish it was that easy… to make the decision to be strong and then just do it. But that has not been my experience. I have gone through all the stages of grief so many times, for every aspect of our lives. And when I finally think “Okay, I think I got this” a wave hits me, and I feel like I’m right back at the beginning. I feel the stages I experience most strongly are Anger and Depression. When we got that PVNH diagnosis I tried to Bargain with God to fix everything, but when that didn’t work like I wanted it to, I got pretty Angry at God and the world for a time. Then came the depression.

 

I feel like Brandon took it all in stride so much better than I did. I fell apart pretty hard, for months… and I still have days where the reality of what we have to deal with as a family hits me hard. But he has been so strong, supportive, and loving to me and Sage and Clover. (I’ve actually gotten pretty bent out of shape about that too, because I want him to feel it all like I do, but ultimately, I am glad that he doesn’t). He deals with his grief a lot differently than I do. I started a Facebook page for Sage to be able to have an outlet to express my struggles, thoughts, and feelings. But Brandon doesn’t show or express his feelings as openly as I do. He does a lot more internally, thinking and processing, than he ever shows anyone.

 

I was recently reading a book written by a good friend of mine that also happens to have special needs children, 3 of them. She has been going through all this for years now and has some amazing insights. In one chapter she touches on the stages of grief and how she and her husband were going through different stages at the same time. After the diagnosis of her first child, her husband was in the denial stage, and she was in depression. Through my own experiences with our situation, I can see how the parents of a special needs child often need to experience the stages of grief differently from each other. If Brandon and I had both been in the depression stage or the Anger stage at the same time, it would have been that much harder and worse for all of us. I do feel bad that he has had to take the brunt of my emotional rollercoaster with our situation, and I could never had made it the point I am at now without his steady, grounding personality.

 

Greif often takes unexpected forms. At the beginning of this journey, I was paralyzed. I struggled to do even some of the most basic tasks. Brandon stepped up in a big way and took over all the things I would normally do and took care of me in the process. Other times it shows up in a very short temper, about meaningless things, that I always regret later. It has also presented as avoidance, procrastination, retail therapy, and staying up way late/sleeping in (when I can) which almost always results in feeling very tired.

 

I recently wrote this about a particularly hard day. Things have been looking up for Sage. She is on a new medication that seems to be helping, she has been progressing developmentally rather that regressing, fewer overall seizures, and just doing better than she has for almost a year. Then on Halloween 2023 she had 13 hard seizure episodes…that’s double the amount she usually has in a day. And these seizures were hard ones, not the subtle ones she been having lately. The next day everything just came to a head. Nothing really happened to trigger it, but I guess you could say I was just filled up so much that it overflowed.

 

I Broke Down Today

“I broke down today. It opened my eyes how much I’ve been trying to keep myself together, put on a happy face, and trying to focus on the good things that have been happening.

 

I broke down today. I cried while talking to a complete stranger and apologized for being so “emotional”. I cried in front of my 4 year old, and she asked if I needed a hug.  But we were driving in the car so she promised to give me one when we got home.

 

I broke down today. When I thought I was doing so well, when I thought I was coming to grips with this life we are living. This life I didn’t choose, but do my best to embrace

 

I broke down today. But, in the midst of feeling how heavy the weight I bear really is, I realized it’s ok to break down. It’s ok to let myself accept that what I do on a daily basis is HARD.

 

It’s ok I cried in front of a stranger, hopefully it will help them show compassion to others more easily.

 

It’s ok I cried in front of my 4 year old, it teaches her that it’s ok to feel things deeply and gives her opportunities to show love and support to others.

 

It's ok that I feel overwhelmed at times, it’s ok that grief comes in waves, and it’s ok to feel it all. It’s ok to celebrate the successes, it’s ok to get excited when things go better for a day, and it’s ok to feel defeated when there are hard days or setbacks.

 

I broke down today, and that is ok.

 

#speciallittlegirl #specialneedsmom #specialneedsfamily #sagemariewebb #oursweetsagemarie”

 

 

At the beginning of this year (2023), Sage was doing pretty well, but still having quite a few seizures daily. Developmentally she could sit for up to 20 minutes at a time unassisted, she was interacting really well, and eating more solid foods (still totally dependent on me) and starting to gain more weight. We were waiting on her VNS (Vagus Nerve Stimulator) to hopefully help with seizure control, but because of sickness it had been pushed back twice by the beginning of the year.

 

I was getting hopeful that things were finally looking up, and she was developing in such a positive way, despite having so many seizures still. She would go days without a seizure, but they were still prevalent. In an effort to help control her seizures before we got the VNS we started her on a new medication, Vimpat, and things started to go downhill. It took me a while to really pinpoint that the medication was probably to blame for most of it, but she slowly started to lose muscle tone, not able to sit for as long, and her appetite started to decrease. All this while starting to have even more seizures…

 

Doctors are taught that medications are supposed to help, not make things worse, but this one was hurting my child. I was in Denial for a long time because I trusted the doctor’s opinion that it was her seizures that were causing the regression. I hate to admit that she was on Vimpat for 6 MONTHS…. And as soon as we got her off it was when she finally started to progress again. I was so Angry with myself for letting her stay on it for as long as she did, because ultimately it is my decision, I am the one who gives her meds every day.

 

I have delt with a lot of self-Anger/ been Angry with myself for how things have gone. I know, logically, that everything she is going through is not my fault, but there is still that little voice in my head that says it is. I am her mom, so I should be able to fix it all, I should have been able to prevent this happening in the first place. But then I am reminded that there is a bigger plan at work here and God sent her this way. He sent her just as she is to make a difference in this world somehow. By doing so, I know He has changed me so much. Anyone who meets Sage is forever changed by her story and her sweet spirit.

 

Acceptance comes in waves, just like the other 4 stages of Greif. But Acceptance is different. When I feel that I have reached the Acceptance stage, it almost always comes with a feeling of release. Release of tension, like an exhale, and it allows me to give myself permission to be happy in the moment. It is these moments that I feel I can truly “soak it all in”. I tell people that Sage is my Forever Baby and there are times I say it with a bit of sadness or with an air of explanation for why she is 2 ½ years old and still can’t do things a 6-month-old can do, but when I am content with our life, when I feel that Acceptance, I say she is my Forever Baby with Pride. She is my Forever Baby! I get to soak in the baby moments for years rather than a few short months. I get to celebrate Every Single Milestone, rather than wonder where the time has gone (even though I do still wonder that!).

 

Denial, Anger, Bargaining, Depression, Acceptance. Greif is a living thing when you are the parent of a special needs child. It breathes with you, it grows with you, and it can cripple you when you least expect it. I fully expect Grief to come with us for our whole lives. I saw a therapist for a time and something she said really resonated with me. She said that I am constantly going through trauma, every time Sage has a seizure or set back or sickness, it causes a trauma response in my body. Unlike a one-time thing, like the death of a loved one for example, I get to experience these traumas almost daily. With that trauma comes Grief.

“It is understood that the beauty of a rainbow does not negate the ravages of any storm. When a rainbow appears, it does not mean the storm never happened or that we are not still dealing with it’s aftermath. It means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover, but the rainbow provides a counterbalance of color, energy, and hope.”

 

-Author Unknown

 

I really love this quote and feel that Sage is truly my rainbow through this storm. Sage is my light through the darkness, and even though we deal with storms very often we still have these wonderful rainbow moments where she will giggle or interact with us in such a unique way. When she began progressing again after almost a year or regressions, that was probably the biggest rainbow, and I am eternally grateful for this beautiful baby girl. Clover has also been such an amazing strength, and I fully believe there is a special place for the siblings of these unique special needs children. Clover is that little break in the midst of the storm for me, while it is still blowing hard, she is there to remind me to be strong. These two amazing girls are my life, and I am so thankful for them and their wonderfully supportive daddy. This journey is hard, but when I remember that I am not doing it alone I see the rainbow that provides color, energy, and hope to endure the hard times that come.