So last week wasn't an easy week and neither was the weekend. That's okay because things happen and if we don't learn how to pick ourselves up an wipe the dirt off we just continue to drown. Basically, the primary issue centered around a visit to Jude's grave at the cemetery. Mike went by and noticed that all of the items we have left for Jude had been removed from his site. Now, let me explain that we chose a rural cemetery for two reasons. We felt it was peaceful and serine like Jude but they were also more lenient regarding wreaths, plants, rocks, etc left at sites. Parts of my family are Catholic, parts are Methodist, parts are Jewish, etc. So we combine a menagerie of customs when it comes to Jude, one of which is leaving a rock on the headstone to symbolize a prayer. We had a small wire bird basket that held prayer rocks in it and rocks friends had decorated. We also had a Saint medallion that had hung on Jude's bed for 7 years hanging on his headstone, we felt it was fitting. When Mike called me I was calm at first and then something just triggered my grief and I had the ugly cry. You know the one where you cannot catch your breath?
Mike showed up at my office and assured me everything would be fine, they're just material items. He has a way of calming me down when it's most needed. I called the cemetery and found they had Jude's items in a box and had completed a "clean up" of the cemetery. We were grateful to have the items back but I was crushed that his medallion was missing. The facility explained they no longer allow rocks on headstones but I pointed out even the national cemetery allows rock in the symbol of prayer. We will see what happens but at least we have his items back and I understand that sometimes they have to clean up the areas. So we got everything in a box with the rules in a folder. Lovely.
Skip to this weekend when I had to tackle four stores for items I needed. I actually walked out of two stores and forgot the same thing twice, sigh! Anyway, it's hard at the holidays to be in a store if you have lost a child. There is a multitude of feelings that become overwhelming as you walk through the aisle's laced with Christmas cheer. Seeing the little children with their families is both glorious or torturous all at the same time. You smile as the kids bump into you as you wipe small tears away at the same time. So I decided to buy myself a bouquet of flowers, a bottle of wine, and head home to put up Christmas. I figured I would tackle the negative with positive.
I then encountered a situation where I tried to do the right thing but it just didn't work out in my favor and that's okay. Sometimes that's the way life goes. So I found an interesting meme today that made my thought processes fire in all different directions.
True that sometimes in some situations we just need someone to just listen to us without judgement or opinions. However, let's spin this saying another direction. Sometimes to help a friend all they need to do is listen. Sometimes your true friends are not trying to be your parent, not trying to know it all, but they're just trying to protect you because they know the ultimate outcome. Sometimes your friends who love you dearly can sniff out crazy and unfit people before you may see them. Sometimes we don't want to see the, "he will learn or she will learn the hard way" happen to a good friend. A good friend wants to see you avoid the pain all together. Just my thought for today.
I haven't blogged in awhile again but thought I would today because it always helped me with Jude and maybe it will help now. I am sick again, diagnosed with "community acquired pneumonia", yea I have no clue either. Last week my right ear started hurting but other than feeling run down I didn't have any other symptoms. Saturday evening my husband started complaining he was not feeling well and by Sunday morning he was at Minute Clinic diagnosed with Bronchitis and a host of medications. On Monday morning I woke up feeling TERRIBLE. So I also went to our friendly neighborhood Minute Clinic too, I love the doctor up there. She spent a lot of time with me and I figured I would get the same diagnosis as Mike and get sent on my way. I was wrong.
The doctor said I had zero movement in my right middle lung and with the fever that led to the pneumonia diagnoses. Read until the end of this blog because I am not just complaining my writing has a purpose. So the doctor asked if she could be blunt and I told her I prefer blunt. She said, "Between the lengthy trauma you guys faced, the grief, and the invasive virus that attacked your facial nerves, your immune system is shot!" (no kidding) She went on, "It will never be the same but I am worried if we don't get it stimulated somehow you won't make it to 70." Wait what? Okay whoa doctor that was too blunt. She explained that I would run out of medication options. So she had me pick up some Vitamin D3, prescribed me a healthy dose of antibiotic, and suggested an immunologist. She did go through a host of questions which I found interesting. Of course she swirled around if I smoke or vape multiple times (I don't) but what was most fascinating is she asked if I live in a new home. I told her I didn't and she confirmed that was a good thing because many new homes carry mold and toxic issues. Interesting since I have a friend that is SO sick from mold in a new house.
I told her I have tried CBD oil (made it 100 times worse), juice diet, Keto, celery juice in the morning, supplements, etc etc. She laughed at most of it and other times she nodded her head in agreement. I told her I like to walk and that helps unless I am sick and she agreed that is helpful. I explained that I have learned to treat my eye issue with rest and non-conventional medications, she seemed to like that. She was kind and just said basically that this is trauma and the body's reaction to trauma both through Jude, my life, and now the virus that attacked. So the reactions I get when people hear I am sick is "again?", why?", "what's causing it?". I don't mind but if it annoys you just think how annoyed I am. I am not a stay at home type of person and I feel trapped at home.
I almost feel like this is comparable to Mike's heart situation, everyone has an opinion and we appreciate it but not all health issues fit in a bubble. Mike had nothing structurally wrong with his heart and zero blockage he just got a nasty virus called myocarditis combined with pericarditis that attacked his heart muscle. Why? Trauma and grief. We work through our grief each day but I would love for everyone to take one step back today. Imagine not sleeping correctly for 7 years and being constantly stressed for 7 years then after that 7 years you spend the rest of the time grieving. We were in and out of hospitals racking up viruses and bacteria's in our bodies like MRSA Staphylococcus. That's a booger to deal with.
I have learned to tell people no when asked to go out. I have learned to rest when I need to and that the world will keep turning. I am still learning to balance work and health but it will happen. Regardless it's just the side-effects of a traumatic situation that no one could have avoided and one we wouldn't ever take back.
Wow, I really don't write as much as I used to. Looking back over my blog I had about a 1000 visitors a day looking for updates to Jude's situation. I am honored so many people followed his story and his life. I guess without him here there is a bit of emptiness I feel in writing but it can still be therapeutic.
So today's topic is one that may be a bit controversial or not, we will see. Let's talk about celebratory functions in life such as birthday parties, weddings, and showers. Today on one of the special needs groups I am still a part of (I stay to help others) a mom was upset because her sister-in-law was currently not on speaking terms with her. They weren't on speaking terms because the girl in my group failed to attend her nephew's birthday party. She turned down the party because with outside temperatures soaring a stroke survivor can have a hard time regulating body temps. She put her son's situation before the birthday party. So let's break this down in a realistic manner on all sides. The sister-in-law was probably just disappointed and failed to express her feelings in a positive manner. She also probably didn't fully understand the reason the family didn't show to the party, but it really doesn't matter........to be blunt. It's okay to be disappointed when a family member doesn't show to a party, wedding, or shower. I have been there, you have been there, we have ALL been there. However, under no circumstances does anyone owe you an appearance. This is something you really learn when you have a special needs child and it was a lesson I needed to learn.
I always made sure my kiddo's had nice birthday parties and of course I would be disappointed if I didn't see family, more so with Jude because we knew it could be his last. However, people have lives and they have situations that come up. I can tell you flat out I don't like driving anymore especially long distances, it causes high anxiety for me. By the time I reach your event I will resemble some sort of wonky eyed Gremlin. This is an after effect of Jude's death. I had an accident years ago with Emily that was horrific and it caused driving anxiety, this went away until Jude passed. Luckily most of my friends and family fully understand this situation and my husband is extremely patient with it.
Families that have special needs children have a lot of daily issues that prevent them from going many places. A lot of times the family just doesn't want to go, they're tired for Christ's sakes. I lost a friend when I was with Jude partially because I didn't attend a wedding. Granted this family was very close to me but it was a long drive, I would miss time with Jude or family, and I just decided not to go. Mike was fantastic about not letting people who were upset bother him. He would use my grandmother's line, "they can get glad in their mad pants." As I went through Jude's situation I had to admit sometimes people just don't WANT to come to your hosted party, shower, or wedding and that's okay. I became comfortable with the fact people needed to put themselves and their immediate family first a lot of time.
For us, Jude didn't travel well and had a vast amount of equipment. Sometimes we had nursing who could watch Jude at night but the vast majority of his life he didn't have that. Having someone watch Jude other than his nurses was a lot to ask of someone. So sometimes prior to getting upset maybe we just need to step back and realize that people have lives and other things going on. It's certainly not worth not speaking to someone.
Disappointment is also a part of life and it's okay for kids to learn that not everything always goes as planned. Sometimes people don't show, sometimes things happen to prevent you from attending, and sometimes a child their age is just too sick to travel, or even have a birthday party like your child can have! Sometimes I wonder if children learn this lesson at a young age they won't terminate conversations with family members because of party disappointment as adults.
Great news on Emily, well most of it anyway. Her biopsy did show inflammation in her thyroid but no cancer! Also her MRI was clean. So Emily was officially diagnosed with Hashimoto's and they seemed to have have found a good medication for her so she is finally feeling better. She spent her Spring Break seeing multiple doctors but since she is feeling better it was all worth it.
So because my life always seems to be chaotic last Saturday the 9th wasn't any different. I had spent the day cleaning outside and was very tired so I went in the house to take a shower. Mike had been shampooing the carpets in our bedroom and I didn't think about the fact it would leave residue on my feet. I have a very deep tub/shower combo and when I went to step into the tub I fell. My foot slipped and I remember thinking I would catch myself and I didn't. My body twisted sending my left leg up under the glass and I landed on my right ear/head. I felt shooting pain and just began screaming for Mike. He came to my aid and I don't think either one of us really understood how bad the fall was or how much worse it could have been. Over the next few hours and days my leg began turning lovely shades, my ear was bleeding, and my head was pounding. I assumed I would be fine but my friends and family got to listen to me whine a lot (A WHOLE LOT). So about a week later my boss made me go to get a concussion workup and when the urgent care saw my leg they sent me to the ER side. Sure enough yours truly waited an entire week and had a closed head injury, don't do that! Take it from me and get checked out. The point of this drawn out story about my clumsiness is that when I fell and Mike pulled me out of the tub I just sat on the bed and cried. I just broke. Maybe it was finally needed. I just cried and cried and cried. I said, WHY do things keep happening to us? Then I got up and saw a tree had fallen over on my chicken coop fence and I shook my head and walked off.
Here is the thing, I could have died from the fall or had a compound fracture but I didn't. Emily's biopsy could have been must worse and Mike's chest pain could have been a heart attack. The coop fence can be fixed and all the other complete bull%%$@ we deal with never ever compares to losing Jude. So it's all fixable. However, for the first time I just said NO MORE. It was like a declaration to the universe that nothing else needed to happen to us. I know I cannot control this but I just felt I needed to let God and the Universe know that I couldn't take anymore. So from that moment forward I just started believing nothing else was going to happen and that I needed to distance myself from any type of negative news for awhile. So I am respectfully asking people to let me heal for awhile from everything that's happened and let me have a bit of a break. Spare me from sad news or tragedies unless it's vital.
I have been spending more time outside walking our dogs, spending time with my good friends at wine nights, and watching lots of movies. So I am taking what steps I need to so I can decompress and recover from a rough ten years. Last night I sat and went through Jude's book from his funeral, it's something I needed to do. I don't remember a lot from his funeral and it was comforting seeing all the names of old friends and new friends that made their way to tell him goodbye.
So it's been a joke that 2019 has started off absolutely terrible but I am declaring this the year of a return to health and a positive state of mind.
I have been mulling around the words for this blog today but I am having a hard time properly articulating the exact emotions I am feeling. I worry about sounding down, defeated, or brimming in self pity. Honestly though I don't really care how I sound anymore because I am at my wits end. I haven't been very talkative today because I am processing all the thoughts I have and evaluating what's important in life. So I cannot handle bad news today or honestly much chit chat so forgive me if I am not answering you, I will. I talked with Em prior to posting this so she is on board with people knowing what's going on. I just ask people to refrain from texting or calling her because she is overwhelmed. We have been hit by what seems like an endless cycle of tragic or stressful circumstances and each time one strikes we find a way to keep marching on. A sign that hangs in our house is, It's not about waiting for the storm to pass it's learning how to dance in the rain. However, sometimes the flooding from the hurricane is just too much. Sometimes it just takes a huge toll.
On Saturday Emily called me and said she was being taken to the ER by her friends. Keep in mind Emily is in Tusacaloosa at school. I basically said, "What why?" I knew she has been having issues with the problem I referenced in my prior blog and has been very ill for weeks. She said her blood pressure was reading high around 145/85 and she had a high heart rate. She also mentioned her heart felt like it was fluttering. Having dealt with Jude's medical issues this is how my brain works in order....
High blood pressure - Probably anxiety
High heart rate - Probably medication related
Fluttering heart - concerning but I have heart palpitations so it could be hereditary, could be medication, could be multiple items.
Hold it together mom and be calm on the phone.
So I tell Emily to contact me once she reaches the hospital. A few minutes later she calls back and says when she stands up her heart rate soars over 150. Call 911 Em, and she did. They got her to the ER and thankfully most everything checked out normal. Her thyroid was off which was the issue from the start, she was having a panic attack from feeling so terrible, and side effects from the thyroid medication. So they released her knowing she had a Endocrinologist appointment yesterday at 11 am. However, prior to releasing her I was researching flights trying to get to Alabama because I had enough of being so far away from Emily while she felt so terrible. Mike talked me off the ledge and when the standby flights turned red I explained to Emily I just wasn't going to make it on a flight.
Fast forward to her specialist appointment. I had an event in Dallas yesterday so when Emily called I excused myself and walked in the other room. She was crying.........like trying to find her voice crying and I was once again scanning scenario's in my head and wondering WHAT was happening. So she calmed down and said she was diagnosed with Hashimoto's and then she informed me they found a nodule on her thyroid. They said there was a slight chance it could be Thyroid cancer but it's rare. For a minute the world seemed to spin and I muttered something to Emily who promptly reminded me she was calling ME to calm HER down. Of course of course I said and then asked what the next course of action was. They will do a biopsy of Emily's thyroid next Wednesday and they put her on new medication for her Hashimoto's. To do the biopsy they will insert a needle into her neck into her thyroid. Right after my call to Emily I called Mike who was now standing on the ledge with me in full force and also talking about flights.
Emily then took paperwork from the school to the primary campus health department to have them fill it out for a type of college "disability." Which basically just means she's been dealing with an issue that has made her miss classes (keep in mind she made the Dean's list with this mess) and they will work with her professors regarding absences as long as she completes her work. The lady at the healthcare center must have been having a bad day because she was extremely rude to Emily. It's hard letting go of your children sometimes because the Mama bear in me wanted to call the department and professionally explain that their job was to make her situation less stressful not more stressful. College's wonder why we have issues with mental health. Anyway, I encouraged Emily to email the doctor directly and explain the entire situation and ask for help. She assured me she would do this.
Here is the reality. 90% of these nodules are benign and I have no doubt Emily's will be too. I have no doubt that this is simply being caused by the Hashimoto's. With that being said statistics can sometimes grate on our nerves with our family as a whole. Every time someone gives us a statistic we tend to be in the 10%. We are literally the, "You have got to be kidding me." elephants that are in the room with everyone. That is the best description I could come up with. There really isn't much to say......we know we will get through this, we know not to let it get us down, we know it could be worse and we know all the other words of encouragement anyone can offer. The reality is we have faced many situations and they didn't turn out well so we are staying very positive but are still a bit scared so we have asked for lots of prayers. People might just have to bear with us while we are a bit angry for a bit, I am sure it will pass soon. Emily is young and shouldn't be dealing with this and our family should really just get a pass on a child being sick. Once we get over being upset we will march forward yet again. I am quite sure Jude is helping us every step of the way and holding his sister's hand for sure. She is the one dealing with this head on and as usual she's amazingly strong. Emily has a resilience like no one I have ever seen and a great heart.
Sometimes it gets to a point to where I feel like Eeyore always saying something has gone wrong. So here is the gist of the situation at hand. Mike is better but still having some issues regarding his heart so we still work to keep stress down, which isn't happening. Emily called us the other day and told us she just hasn't felt well for awhile now so she decided to go have a blood test. We haven't really said anything except to close friends and family but Emily mentioned she hasn't felt well on social media so I thought I would explain. Anyway basically per the blood test Emily is in fact dealing with an illness and one that's most likely an autoimmune. I am super impressed this dedicated girl made the Dean's list while she was SO sick. She is really suffering so if you could keep her in your prayers that would be great. She started her medication today and we are praying it helps her and gives her some relief. At first I was mad that I have another child that's ill but then I become grateful it was diagnosed and that it wasn't anything worse. Again, trying to see the silver lining.
Then we encountered some more stress this week that isn't worth going into but then even more hit when this morning about 10am Mike called my work. He simply told me that he had been hit by an 18 wheeler. I asked, "Are you okay????" He replied, "Yes. Police are here I have to go." So I felt relieved he wasn't hurt but was wanting more information and very concerned and laughing because what the heck else are you going to do at this point but stress laugh. So finally Mike called me back and a semi backed into Mike pushing him into the car behind him. So we are grateful he wasn't hurt, grateful he was in a large truck, and thankful he wasn't in my Beetle because as Mike said, "He would have been up in your engine." His bumper is gone, his hood won't open, and his front is messed up but it's nothing that cannot be repaired. So again finding the silver lining.
When does it become enough? About 10 years ago!! lol. I am a bit tired of looking for silver linings in life but Mike ever the best player of this mad game said, I would let everyday be like this if I could just have Jude back. Isn't that the truth so as hectic as life gets it's never as hectic as not having him with us. When I called Mike to tell him about Emily he said, "You know let's add more to the plate because I don't think there is enough. You know there are a lot of people out there that have had difficult lives and we really need to take some of their burden." haaaaaaa! The truth is that we are blessed and there are people that have VERY difficult lives and like I always say, everyone has a story it's what you do with yours that counts.
God Bless and Happy Valentines Day.
Mike and I have been dealing with a high stress situation yet again. One that landed him in the ER yesterday, he will be okay. However being back in the hospital always induces anxiety in both of us. Overall we handled the situation well but on the way home I just started crying at the thought of possibly losing him and the thoughts of when we lost Jude. I thought I would write out what happened when Jude passed for therapy reasons and because others just may relate. It's also my chance to finally thank so many that helped us. I have talked about a bit of this before but not the exact company's.
It's strange when someone dies and being around death many times I can attest it's even more uncomfortable when it's a child's death. It's a mixture of feeling you don't know what to do but knowing you know exactly what to do all at the same time. I cannot truly explain what it's like to watch your child die but I can tell you that it leaves you in utter shock, then somehow you find a way to move even though you feel frozen in place. I called my dad and step-mom, I called Jude's nurse, and I called Mike's mother. All three families contacted asked if they could come over. It was odd to me at first because you think people just want to attend the funeral but they wanted to come see him before he left. I also called my aunt in Missouri. Those core people were all in charge of informing the rest of the family but not saying a word to Emily until we reached her. If you remember, Emily was away in Dallas.
I remember picking up the phone and calling the funeral home and making arrangements for them to come pick Jude up. I then looked at Mike and asked him to go get some new Superman Pajama's from the store. It gave him a project because he was stunned in silence. I then contacted Trey Ganem who made his custom Superman casket and he had that item turned around and delivered within 48 hours. Mike made it to the store and said he was just standing in the children's clothing section and a clerk came over to ask him if he could help him locate something. Mike said, My son just died and my wife asked me to get him Superman pajama's." The clerk had him covered and helped Mike every step of the way.
Once home with Jude's clothing his nurse Charlotte helped me bathe Jude, dress him, and fix his hair. That was disturbing to see Jude like that but comforting that Charlotte helped me make Jude look handsome. As family flowed in so did the funeral home who had a director by the name of Matthew who since had become a friend. He was kind, talked slow and calm, and helped every step of the way. He cried with us saying he had young children and he put his heart into everything he did. Lucas Funeral homes were truly amazing to us. They even joined in with Jude's theme.
Matt gently explained at the house that they would be taking Jude out covered and loading him in the hearse to go to the funeral home. They told us to take our time but everyone was ready. Silently they covered his little body with a golden type of blanket and they asked Mike if he would like to push him. Mike agreed and it was one of the best things the funeral home could have done. We all silently followed behind Jude, then Matt advised us we would meet the next day, and then Jude was gone. It was so strange and so final.
After that we had meetings with churches, friends, pastors, and more regarding music, speech's, flowers, and other items that were for the living. Jude however didn't have to worry about any of that. I think he just sat back and watched how much everyone loved him and how much he touched everyone's lives.
So the waves of grief are smaller in height now and grower fewer between crashes but when one does hit me these are the flickering pictures that run through my head of the very worst day of my life but the best day of Jude's. He got to see heaven that day and that was pretty amazing I am sure. I have learned through this difficult course that it's okay to have a grief day every once in awhile and to have a really good cry. I think it soothes the soul.
Anyone on my social media knows I have been battling an illness since July and I have now been plagued with pneumonia. I wouldn't say I used to get annoyed with people that were sick or their posts but I would wonder why they just couldn't be positive. I used to be sure that those particular people who were constantly experiencing an illness or tragedy had to have their own negative underlying force propelling their situation. It seems karma took a big flat flyswatter and smacked me in the head with it teaching me humility and empathy. I cannot explain how irritated I am with resting in my bed because I am such a person on the go. Yet again this weekend I will be spending the majority of my time resting and trying to get better. Ironically all this came on after I started working out again. I had a friend joke that I should just get rid of the sage in my office and all things healthy and try the complete unhealthy route. We had a giggle over his comments.
The consideration came up that maybe I was letting the grief over Jude control my life and my health. I don't think this is the case. I have no doubt that it has had a profound effect especially because Mike and I didn't sleep for more than 7 years. In fact, the doctor recently told Mike (who is ill too) that Jude's situation ravaged our bodies, but we wouldn't have changed anything. I believe that although grief effects us we also grow from it and learn to live again. We had a choice to give up or keep marching and out of a promise to Jude we kept marching. My aunt sent me this article yesterday and I think it perfectly describes our personal feelings regarding grief and it's lasting effects.
https://themighty.com/2018/12/ball-box-analogy-grief/?fbclid=IwAR0uAPKI7L38tOnb-tPfXxmek_RJ-DZ53r-fCplspw_1JKEcf0WCViRj4_s
I am ready to get better though I can tell you that! I am looking forward to being healthy and take a weekend trip away with my husband somewhere! All those out there dealing with daily illness situations, you have my complete and total respect.
