Way past time for a PANDAS update

 Somehow more than 6 months have gone by without an update on how Sam has been doing. I was going to update after her Rheumatologist appointment in February, but I was afraid. Then again in May, but I was afraid to somehow jinx our girl. 

My last update was in October. Since then Sam has had some ups and downs, but has mostly been doing well! She has been playing, growing, going to school and playing sports again. 

We spent the week before Christmas at our favorite place and enjoyed the holidays at home with family. 

She had a Rheumatologist appointment in February. Saw her doctor and had imaging done. So excited she showed no evidence of JIA and was officially in remission from active arthritis disease!  

With her doing so well the decision was made to take her off of her maintenance medicine she had been on for 9 months. It can affect your kidneys and we knew they needed a little time off too. We tapered her off and held our breath. She was so excited to not have to take it, but also scared of what may happen. That made two of us! She did really well without any issues. She continued with school, daily activities and being an active 10 year old.

I was going to post about it, but again, I was afraid as soon as I said she was fine, she wouldn’t be. So silly the mind of a person with OCD. 

Meanwhile, she fell and broke her arm. Then she had an abscess form on her leg that had to be drained, followed by a terrible rash from the antibiotics she was on for the abscess. Poor thing! She was a trooper through it all. She even started her softball season in her cast! 

 

In May we had another follow up with Rheumatology. Dr. Schulert was again amazed with Sam’s progress. We told him how great she has been going off of her meds and that she has been playing softball and volleyball. Doing well in school and her happy self. 

The next day Sam woke up and was off. Not a lot, just a little more irritated and moving a little slower. The following day she was not wanting to go to school. Saturday she struck out at her game because she was afraid to run, then cried and left the game. We talked that night and she broke down so scared it was all happening again. I assured her we were not going to let that happen. We had Dr. Schulert and medicine to help. Sunday she woke up with a fever and it all made sense. She was coming down with something and her immune system just went haywire. PANDAS is sneaky like that. We started her on her meds again and Monday she stayed home to rest. Tuesday she was back to school, but nervous to leave and about the stairs. It was like dejavu. Wednesday she woke up excited for school. Thursday she was dancing and back to herself. Friday she was on the softball field. PRAISE THE LORD the naproxen had worked! It worked fast. Within the week she was back to herself. We took Dr. Shulert’s advice and had her stay on it for 10 days. We now know when she is sick this may happen. 

This is part of Autoimmune disorders in general and PANDAS doesn’t mess around. We know she may have a flare again and now we know the signs and what to do. 

I hate that she has to deal with all of these things, but I am so proud of her grit and desire to get better. She used to fight medicine, this time she knew it would help and she asked for it.

 

When she was in the flare she said- this sucks and isn’t fair. I’m a kid. I told her I would take away all of the issues in a second if I could, but she has to deal with it. It is a lot to deal with, but she is more than her diagnosis. She is more than the flare. JIA and PANDAS are not who she is, they are just a part of her life. She is so much more. Even through the trials and medical issues she is taller, stronger, sassier and all around a better human! Almost 5’2 at her last appointment at 10 years old. 

The difference from the last day of 3rd and 4th grade 

There are parts of life we don’t want to have to deal with, but we will be proactive and positive and make sure we are always advocating. We will continue to see Rheumatology every few months and need to schedule and eye appointment this summer. Stay off the meds, unless we need them. We are enjoying every minute of the sunshine, exploring the city we live in and looking forward to a great summer. 

Here is to all of the activities and fun we can fit into our days! 

Prayers for a summer of health, happiness and lots of sunshine. 

 

Seventeen

 Seventeen years of loving you. 

Seventeen years of missing you. 

Seventeen years since I have been the same. 

After 17 years, I feel like it is time to share for my sweet Emma Jean. She doesn’t get the chance to speak her truth, so today in her memory, I will speak it for her. As much as I love to share Emma, I don’t share this part of her story. 

It’s something I have held in my heart with such regret it eats at me. A few people know, but I’m not sure how much even those few really know. 

There is a word I don’t even want to say out loud because it brings me such pain. 

Words I have used 

Wanted, loved, cherished, desired…. These are ways I want to remember my daughter.  Aborted is not a word I ever want to use. In the medical community they call it inducing. I induced with my sweet Emma, only to find out later I aborted her. In the midst of my shock and grief I never thought of what we went through as anything as terrible as an abortion. I induced for her comfort, for my safety, for the health of myself to survive a pregnancy I was scared to continue. 

At least that’s what I was told.  

Beside myself with fear, I prayed for answers. Induction seemed like the best choice for our family. If only I had realized my Aunt’s concerns about induction were so much more than I knew. If only we had known - as the insurance paperwork would report, Abortion was the reality. 

I hate seeing on the news and social media stories of 

All of the women out there shouting their abortion. Bragging about the baby they are pregnant with not being human. Protesting their right to kill their child. Most without any adverse diagnosis. I imagine many have never even been pregnant, never having been given a diagnosis incompatible with life. Most of the women shouting don’t have a clue.

How many of them have sat in a room with unimaginable grief? 

How many that spout off about women’s reproductive rights have felt the pain of loss ?

The pain of your body no longer being pregnant. 

Not understanding that the abortion means your mind knows the baby is gone and your body continues to make milk and believe it is sustaining life. 

How many have felt the absolute despair of grieving a baby you know would not have lived, but you question yourself every fucking day not knowing if you’ve made the right decision?

My body, my choice- but not with out the consequences. 

Pain

Grief

PTSD

Regret

Uncertainty

It has been 17 years today. 

Every single day I wonder who she would have been. 

Every single day I wonder how life would be if I had the knowledge I learned with Connor and the fight in me to advocate for my pregnancy. 

Every single day I wonder how I could have been so naive and stupid to not know Induction and abortion were the same. 

I never held my baby girl in my arms. 

 I will never see her face. 

On her birthday I grieve differently than on Connor’s birthday. 

Emma gave me the gift of becoming an advocate for all of my kids. 

She made me a fighter. 

She helped me question doctors, ask for second opinions and to keep pushing and 

to never 

back down. 

Having a diagnosis incompatible with life is devastating. 

Being told it will be easier to end the pain now is “normal” medical advice. 

Such a lie. 

Grief is life long. 

Shortening the time you spend with your child does not help anything. 

It brings regret, what ifs and pain beyond normal grief. 

Every second you are given with your child, in utero or on this Earth, take it. 

If you were told your living child had months to live, would you stop caring for them? 

If it seems I am passionate about this it is because I deal with the grief every single day. 

I have only ever felt support from my family and friends.

I have never had anyone question me on any part of her life and death. 

But, that doesn’t change the fact that I have always questioned myself. 

Years ago I vowed to forgive myself. To let go of the pain of regret. 

Most days I don’t feel the sting and as time goes on I feel the sadness less and less. 

But, days like today bring me back to the moments of grief so far from reason. 

So Far from healing, that I am back in those moments of pain and regret. 

I question myself. I question each step that lead to her loss. 

Because of my sweet infant daughter. Given a death sentence regardless. A life unsustainable outside of my womb. 

This tiny baby who made me question everything I had ever known. 

Because of my sweet innocent daughter. 

Because of Emma. 

I changed. 

I had the honor and privilege of carrying Emma’s brother to term. 

I had the strength to fight to carry to term. To research and to have more information and faith in myself than a doctor could knock down. 

Her life and death formed a version of myself I am proud to be. 

I am not afraid to stand up for what I believe in. 

 I am who I am today because of Emma. 

On her birthday I hope to honor her with the truth of her story. 

How she was owed so much more in this life than she was given. 

How she will always be cherished, loved, hoped for and wanted. 

Emma Jean, Happy 17 💗