I Should B Used to This

 I Should B Used to This…

I should be used to how life continues to throw us curveballs and challenges  

J is truly a miracle. After years of fertility treatments during a break to save money for IUI/IVF we were lucky to get pregnant naturally with him. The pregnancy was hard many times went to hospital for various things either for me or him. He was born at 39.5 weeks at almost 11 pounds via C-section. He spent 7 days in the nicu due to breathing issues, oxygen levels, heart flap thing (I am terrible at remembering the official names for things) etc. but things generally were okay and then released home. He then had torticollis and needed physical therapy as a baby. Next, it was anaphylactic reaction to eggs during a cake smash at 11 months which resulted in discovering so many food allergies. He thankfully tested out of anaphylactic and all food allergies around the age of three. Next chronic ear infections leading to tubes. Then the behaviors and neurological stuff began. Autism, ADHD, Anxiety, OCD and treatments and navigating it all became the new normal and we continue to navigate it now but are in a good place and “stable”. 

That brings us to the present…

Last week (Friday) at day camp a bunch of the kids (including him) rushed a camp counselor to give goodbye hugs as it was their last day. As can happen, the group all fell to the ground. J had a few bumps and bruises but nothing that needed first aid or anything. By that Sunday his nose had gotten extremely red and swollen and some areas darker. I thought perhaps he sprained his nose or broke a blood vessel or maybe even broken it even though he was not complaining of any pain. I had him put an ice pack on it. By Sunday afternoon it was draining yellow puss and was warm to touch. I immediately knew this is an infection and he needed to go to the pediatrician for sure. I called Monday morning and got him an appointment same day. We go and the doctor agrees it is infected. I shared this place on his nose that was draining has always been there since he was born and would drain clear fluid but had never acted like this before. She asked why it was never mentioned to a doctor. I said I did bring it up at his first pediatrician appointment and again at his 16 month appointment and was told both times by his retired pediatrician it was just an extra tear duct and nothing to worry about. So, for years it has drained and for years we never mentioned it again. Her face said it all, this was not it and it is concerning. She said we should see an ENT swiftly (that is a serious word in her practice and I know it). I got him in to an ENT within two days. The ENT was also taken aback by retired pediatrician’s diagnosis and said extra tear ducts are not a thing. At this point I’m still thinking he had a broken nose or infected broken blood vessel…i was NOT READY for what was to come next. I WAS NOT READY to hear this alone (husband was not with us). Not ready guys…

He has an extremely rare congenital birth condition called Nasal Dermoid Cyst that she believes connects to his brain which means it is also a Intracranial Dermoid Cyst. He needs surgery on his face and probably his brain. To determine placement, size, if it does connect to his brain, and if there is only one he will be getting MRI and CT scans with and without contrast. As he has to be still for a long time for both and need IV which none he does well with, he will need to be put under anesthesia for the scans. They are scheduled for September 8. Scan results will determine the surgery type. He will need scans annually to monitor this and make sure it does not come back. Risks to leaving it in is it will continue to grow and pressure on the brain/eyes/nerves which could be life threatening. As he has had this since birth and grown with it, his body could have been affected by it already and or grown around it. 

To say I’m overwhelmed is an understatement. I’m preparing for the worst because I don’t want to be blind sided again. I’m mad this was missed by so many doctors and I’m mad it was misdiagnosed and I’m mad I didn’t push back and I’m mad I trusted the doctor. I’m mad. I’m mad that it has been a constant fight. I’m mad that just when things feel like they are settled something else is diagnosed and it’s always been like this. I’m MAD. I’m ANGRY. I’m SCARED and there is not a damn thing I can do about any of it and it sucks and is just not fair. I feel so helpless and lost and did I mention scared?? 

If you made it this far thanks for reading. I don’t know what the future holds for our guy but I have been able to find an international online group with other parents like us. Looking through the posts and photos it is even more clear he has had this since birth. From the posts it seems that after months of recovery from surgery it looks like kids go on to live life well with annual monitoring and it is even more rare it comes back. I know other parents have it worse out there and our challenges could be worse. However, none of this changes how I feel or my worries. I feel guilty about that too. 

As of now J doesn’t understand what’s going on even though he was in the room when the doctor diagnosed and shared about the treatment plan. I’m dreading when he figures it out and or we will have to tell him. 

Bloggie world one day, I will post here with nothing but good news. However, it seems this is my place to turn when I struggle. I’m glad I have this space to lean on. 

I will share an update as soon as I’m able. Until then, be well Bloggie World. 

I Should B Running

Bloggie World, do you run? For this question I mean both literally and figuratively. This will probably not come as a complete shock to you, but I’m a runner. I run away from facing hard truths. I run towards the familiar. I run away from change. I run towards anything I can to keep me distracted. 

I ran. I ran in 2019. Mentally it started the day my mom died. As my world spiraled into the unknown I wanted to run away from it. So, I ran towards getting healthier. My mom was overweight for as long as I can remember and I decided I would not continue down that path. I would make changes immediately. So, for the rest of 2019 I threw myself into that. In October 2019 I started literally running. I would only go a day if at all of rest. I ran no matter what. Pouring rain? I ran. No sleep? I ran. Crushing grief? I ran physical pain? I still ran. I continued down this path well into 2020. In March 2020 the coronavirus pandemic began and my only reprieve was to run. I ran while crying. I ran while worried. I was so focused on not focusing on the hard stuff. I had lost 115 pounds when my leg gave out from underneath me while climbing the stairs. I shook it off. I googled what it could be. I decide to rest for six weeks. And then…I ran. I ran through the pain. I ran when my feet were falling asleep during my runs. I never stopped putting one foot in front of the other. The pain of continuing to push myself was easier to endure than the pain that I had been running from for so long. Well, I ran so much I tore the meniscus in both of my knees. I needed surgery and now the thing I leaned to the most was gone. So, I fell back to an old coping method of eating my feelings. Zero movement plus increased calories means weight gain and loss of muscle. I didn’t gain it all back. But it was half. I didn’t want to face what these injuries meant. So, I poured (ran) myself into work. This is something I actually had been doing for years but I did not realize it till much later. And that is a story for another day. 

Today, I have had knee surgery on my left knee. My right knee tear is at the root and the doctor doesn’t like the odds. So, I can’t run. I miss it for many different ways. But I loved the time I had to myself. No social media distractions or emails pulling at me. Just me and the path like old friends hanging out. 

Part of my healing is not hiding from things. Facing them and navigating it in as healthy way as possible for that moment. the things that are hard to face are piling higher than I am tall and how do you know which one to tackle first? I thought for sure I could figure it out on my own. I was wrong. So, yesterday I signed up to connect with a therapist via BetterHelp. It’s an online app where you are matched with w therapist who will message with you and meet virtually weekly. I never thought I could make time to do this. Virtual makes it easier to have access to this resource and I’m looking forward to figuring it out. 

Bloggie World…make today a good day. Find a positive in today no matter how small. ❤️

I Should B Healing

Bloggie World, I have something I need to admit to you. I forgot. I gave up. I got carried away with life and parenting and grief and more emotions and experiences than I can write about right now. I forgot to come check in to this space and with you. With social media transformation through the years I stopped reaching for this blog and instead would paint a picture to the social media world that life is all sunshine and rainbows because let’s face it, it’s easier to pretend than face the reality you are faced with. Now, things have not been all doom and gloom, but it seems when I find myself in a dark place I reach for comforts long forgotten. A quilt, I have had since childhood, a sitcom that feels like a water hug, a long sleeved oversized shirt, and this blog. Some rough stuff happened and I avoided this space. To put it out into the universe in a public and permanent way makes it seem that much more real. However, if I have learned nothing else since I last wrote here, it is you cannot hide from reality no matter how much you wish you could. 

Today, I will pour out as much as I am able to because I Should B Healing. 

To start, my husband and son are doing well. So, if you were worried about them, no worries there. 

On March 8, 2019 (International Womens Day) my life as I knew it shattered and ruptured in a way I was not ready for. It is not something I think anyone can ever truly be ready for. Perhaps you can brace yourself for the oncoming impact, but ready? No, from where I sit, I just don’t think it’s truly possible. On this day, that feels like a second ago and also a lifetime ago, my mother died in her home. She was 68 and gosh I was not ready. There is so much I would have done differently. She called me the evening before and I missed her call. When heading to bed around 11pm I saw her call and thought it’s too late to call her back, I’ll call her in the morning. I called, no answer. I texted, no reply. It was a couple hours later she would be found by my niece as nobody was able to get in touch with her and we just figured her phone died and she did not realize it, just as the many other times this happened. That call, it broke me. I never knew a guttural cry was anything I had ever truly experienced and especially not to do it myself. But I don’t know any other way to explain it. I was alone at home when I found out. I dropped to the ground and cried the hardest I ever have. Then, I picked myself up ran to the car (without shoes) and drive straight there. I thought my niece is young (20) maybe she is okay and barely holding on and she doesn’t realize it. I sobbed and hyperventilated and just prayed there was a chance. I begged whoever could hear me as I drove to just give me a chance to say goodbye to tell her things I had been too stubborn to admit to ask her things I was too scared to ask and to learn from her because life is hard and I had so much more I needed to know from her. I got out of the car, barefoot, and calmly walked to my niece. I could tell by her face it was not a mistake. I could tell from her face, she did not need a hysterical aunt. She needed someone to direct and guide not just her but the events that needed to happen next. So, I dug deep and became that person. Never in a million years did I ever think I would be trying to figure out what to do with a dead body in my mothers home especially not hers. I am thankful for Google and for others who wrote it out for me to use as a resource. So, Bloggie world, here is my contribution to that search. What do you do when you find someone has died in their home? You call the police, non-emergency line. They come out and confirm the individual has died and if there does not appear to be foul play, they leave after taking statements and documenting things. They leave you and the dead body to arrange for transport to a funeral home. There was no help with how to do this or what to do or costs etc. A coroner did not show up to remove the body magically like in NCIS. When I said I was not ready I meant it beyond emotionally and mentally. It is fuzzy a bit on if the coroner did come to her house and then gave permission to transport body, but I believe he did so while the police were still there. So I guess my contribution isn’t the best, but this is the part that stuck with me. The funeral home, which I googled for one close to where we were and called around for transport availability, comes and picks up the body. They took her straight to the funeral home. Not in a hearse. In a van. I will be honest. None of us could bear to watch the process. We waited next door on the porch. Two men showed up with this van and then took her away. I made the calls to the bank, doctors, church, utilities, etc. but…I couldn’t call her friends. I couldn’t call many family members. Not because I didn’t want to. Because nobody knew the password to her phone. We tried all we could even after obtaining the death certificate we took the phone to Apple and there was nothing anyone could do. We lost it all. All the photos and memories. All the phone numbers. All her notes to herself. Such a large part of her, I could hold it in my hands but I couldn’t access it. It chipped another layer away. My mom was an awesome lady, but she also was not prepared for this. Nothing was written down. Nothing was documented. Chicken and dumpling recipe she learned to make on the farm she grew up on as a child…gone. How best to advocate for my child as she did for me…gone. How to come back from the ashes after losing a parent…gone. What to do once she passed? Where and how to lay her to rest? We had nothing. On top of all this my sister was in hysterics for days and I helped navigate that too. It was HARD. My sister and I had different opinions on what Mom would have wanted. Mom briefly would share things here and there through the years when someone passed on a movie or in newspapers. But nothing was in writing. Handling grief and a family and a job and also navigating those choices were very hard. But we did it because she taught us that. She taught us to keep going no matter how difficult the road ahead may seem. Never stop. Never give up. It was also this that helped me navigate infertility which is what brought me back here to this space and to you  

It’s been three years and I’m still not okay. The grief, I have not truly faced. I buried it. Someone had to be the strong one. Someone had to be the rock while other people crumbled. I had a 4 year old son who needed me. So, I threw myself into that. Into being the breadwinner and provider for my family. To carry on the life my mom fought tooth and nail for. I cried only when alone. I crumble and sob while others sleep. I cry during meetings without the camera or sound on. I am still navigating this and admittedly not always doing it well. Writing this out today is my first step to trying to discover a healthier way to navigate this because not only do I need this, my mom would want me to, but I also need to be around for my son. To be the best momma I can be to him for as long as I am able and blessed to be, because tomorrow is not promised. 

I have snot pouring down my face along with tears. I am not glamorous right now. But I’m taking the first steps to healing myself and wishing I had her here to help me. 

Before I finish for today, I am going to say this. Write it down. Write it down and put it in a sealed envelope. Write out your passwords, usernames, email addresses, and other things someone would need, to be able to close the book on things, for you. Do it now, please. Think how much our phones and computers are parts of our lives. What we have there we would not want to be gone once we left. I have a paper where I wrote everything out. I put it in an envelope and sealed it and put in a fire proof lock box in our home. I plan to move it to a safety deposit box along with some other things once I am able. Please PLEASE have a plan so, those left behind do not need to wonder or guess what you would have wanted. Wonder if there is someone out there who never got notified. That second guessing is hard. Making those choices while navigating everything else that goes along with death is HARD. Do your best to write out what you are able. Even if it’s just what you don’t want to happen. It’s better than nothing. Do the hard thing now so others may not need to later. 

Also, if you have young children, get guardian documents drawn up. Nobody wants to think about this. But if you and your partner are gone, what happens to the kids? Have these conversations now while you are able. 

I know this blog has been all over the place, but that’s what things have been like for me. 2019 was the start to some very rough times ahead and navigating the following years without my mom was a curse and then a blessing in other ways too.  But that’s a story for another day. 

Bloggie World, thanks for being here. Thanks for being a place I can turn to. Not only for a place for me to have support, but also a place for people to be able to have a glimpse into pieces of my life after I’m gone. I don’t plan on that being anytime soon. Until then, I will come here and share when I’m able to. I hope my family will find joy in not only reading some of these things but also to know I had a safe place. A place to B me. ❤️

Good night Bloggie World. I’ll see you soon.