Friday, December 21, 2018

How Do We Fix The World Today?

Being around the pageant industry I am always hearing possible on stage questions for the contestants. One of the recent questions I heard was, "With all the tension in America today what would you do to improve relations between different groups and individuals?"

I sat back and thought about what my answer would be and honestly I couldn't formulate an exact way to fix relations. However, my mind drifted to Jude and I began to think about all he taught me. I don't know how to fix relations but I know I had a little boy born who suffered a massive bilateral stroke. He couldn't talk but he really didn't need to because Jude had a way of communicating without even speaking a word. Jude loved everyone he met regardless of their race, religion, sexual preference, or political stance. So I may not know how to fix our world but maybe it starts with striving to be more like Jude. A little boy who changed those he met with pure love and smiles. 

Seems like a great goal to just try and put good energy into the world. I can only imagine the impact if we all met that goal this year. 

Merry Christmas.  

Friday, December 14, 2018

The Funeral and Friends

The other day I subjected myself to watching, "Steel Magnolia's" for the first time in a long time. I am not sure why I do that to myself but I do love that movie. I am sure that you remember that I used a line from that movie in Jude's eulogy. "Oh god. I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when he drifted out. It was the most precious moment of my life."   I was telling a friend the other night through my streaming tears that it's still the most realistic depiction of child loss to me. Which is interesting since it was written about a true story but from a brother's perspective, however, he captured my feelings perfectly. I have written about this movie before and the same feelings still apply. 

When Shelby passes and her mom walks into the waiting room on a mission to retrieve Shelby's clothes and pick a funeral home is so realistic to me. You begin to think about a situation you never dreamed you would be dealing with. It's your child's last more birthday parties, no weddings, and no graduations. It's planning their final send off to the best of your ability. You think about their clothing and sit in shock in a funeral home as everyone chatters around you. You are just on a mission to make it beautiful and meaningful. 

I related a lot to the friendships in this movie. My friend Kelly is most definitely the very embodiment of Claree and many my other core friends fill the other roles.  I don't remember many parts of the day we buried Jude but I do remember my friends watching me like hawks. They did this purely out of concern for my well being. I tried to be very strong that day but at one point they came knocking at the church bathroom door wondering if I was okay. I wasn't. I was panicking because I knew that I was about to say goodbye to Jude for the very last time. They could tell when I came out that I wasn't okay so my friend grabbed her firefighter husband who helped calm me down. I then rerouted the entire entrance for the family to the funeral through a side door versus in the middle of the church. It just let me breathe a little easier. 

My meltdown wasn't beside the casket like in the movie it was before and then after I put on a quiet smile as we attended a luncheon that was provided for us. My friends and family came together when Jude passed in a way that is almost indescribable. In fact my grandmother said, "I have never seen better friends and people move so quickly to make things happen." All I had to tell my friends was I would like balloons, large photo displays, and a few other things and they moved like clockwork. They didn't need to ask my opinions they just made it all happen. 

At the luncheon, my friends asked for a photo and it felt almost wrong to me to try to smile on that day but I am glad we have a memory of all they did. I am thankful for them. 

"I feel fine. I feel great. I could jog to Texas and back, but my daughter can’t. She never could. I am so mad I don’t know what to do. I want to know why. I want to know why Shelby’s life is over. How is that baby ever going to understand how wonderful his mother was? Will he ever understand what she went through for him? I don’t understand. Lord I wish I could. It is not supposed to happen this way. I’m supposed to go first. I’ve always been ready to go first. I can’t stand this. I just want to hit somebody until they feel as bad as I do. I . . . just want to hit something . . . and hit it hard. " Ma'Lynn's monologue.

So very true every part of it and my friends would have definitely had me take a whack as Ousier.

Wednesday, December 12, 2018

Advice and Goals.

So you get three blogs from me this week which means I must be feeling more like myself again. My eye is swollen today and my face hurts but that's okay. The stretches between these flare-ups is getting longer and longer, which to me means I am healing. So this week I have been approached twice by people I know for recommendations for a child neurologist. It makes me sad that anyone I know would have the need for a neurologist but having a good neurologist that cares for your child is vital. So I thought I would share a few things I learned with Jude just in case that could help any of my readers. 

1. Jude saw lots of doctors and his best doctors knew his case without even opening his file. Over time they began to truly care for Jude and always had his best interest at heart. His neurologist even quietly showed at his funeral slipping in the back and then slipping out just as quickly to get to his next patient. The neurologist we picked listened...truly listened. 

2. A good doctor may be a far drive but a good doctor is worth it. 

3. A fever isn't always a scary thing, even a high fever. Sometimes a fever is just doing its job and fighting the infection. 

4. The internet can be a plethora of useful information but it can also be an unnecessary added stress so always consult with a physician before scaring yourself. 

5. You are your child's best medical advocate. It's okay so no to a physician, it's okay to ask for a second opinion, and it's okay to request additional treatment. 

6. Always fight a denial on insurance or Medicaid. They're counting on 3 out of 5 people to not challenge them. 

7.  Keep video's and journals if you suspect your child is having seizures or spasms. They are can be vital a properly diagnosis. 

8. A medical momma has a whole new outlook on things like medications and vaccinations, don't judge her or yourself. 

9. It's okay to say no to friends and family. Your child's health is far more important than a get-together or holiday. 

10. Only go to a pediatric ER if you suspect something is wrong. Any time we went to a regular ER we were transported or they were just lost. They can be great for a broken arm but anything that's complicated needs a pediatric emergency physician. 

That's just a few tidbits I thought I would pass along. 

So has anyone set their goals for 2019? I have sat down and thought about what I really want this year and these were my top 5. 

1. For the first time in years, I want more time for me. I also want quiet time to be with my husband that’s not riddled with sadness or tragedies.
2. I plan on getting in shape again and by April. Seems short but I can do it. I have before.
3. I would like an amazing trip somewhere filled with history like Italy.
4. I’d like to help Emily reach her goals
5. I will have the best year at work I’ve ever had

What are your goals? Share with us. 

Monday, December 10, 2018

Do we really listen?

Sometimes I believe truly listening to another person is an art. I have poured my heart out over the last few weeks about an issue coming up in our lives and I feel like no one is listening. So I sat down this morning and started contemplating what it truly means to listen to someone else, I know I have failed to properly listen to people and I know women speak with emotion which can make it more difficult for men and others to sometimes comprehend the message. 

However, if we truly listen I believe it can help relationships grow, it can help you learn, it can help you heal emotionally and help others heal, and it can stop arguments. It can also solely help people obtain happiness and that's a huge accomplishment. I know more than once I have asked a friend that was upset, "did you talk to them about it?" and the answer is generally no. I think when we don't listen or properly communicate we are basically saying that person's feelings don't really matter. That there well being doesn't really matter and that's not okay. 

I read a quote by Stephen Covey that said, "Most people do not listen with the intent to understand. Most people listen with the intent to reply." Profound and true. So which applies to you? The ability to listen and understand or listen to reply? Does others happiness mean much to you or is your main concern just satisfying people and moving on. 

Friday, December 7, 2018

What inspires us?

I know it's been a while since I have written. As my aunt says life has just been pretty lifey lately and I have been overly busy. The good news is my eye situation seems to finally be resolving. I did see a new neurologist that I absolutely adored! She did multiple tests which concluded that whatever affected my face attacked my 5th, 7th, and 8th cranial facial nerves. That would account for the paralysis, swelling, and the ringing in my ears. She was honest and said we may never know what virus caused this issue or if this is an underlying autoimmune disorder that's not registering on the ANA. She did order another MRI and a host of other tests but I have taken a step back and I am wondering if it's all worth it if we will never know. So I am waiting to see if the situation is truly improving before subjecting myself to more tests. Right now my eye has not swollen in about two weeks, it just twitches and the pain is much better. 

So obviously this time of year isn't the easiest for us but we are here and grateful for Emily and all those around us. We miss Jude terribly and I honestly also miss having a young child to share the wonder of Christmas with. I still frequently think about adoption but we will be taking in Mike's mom and his brother so I am not sure it's an option. I still have time so it's still something I think about. 

Emily shared a video yesterday and it inspired me and also made me think of Jude. No matter how much pain Jude was in he always tried to muster a smile for us and was always so inspirational. I encourage everyone to watch this young mans story. I love the guy that does Special Books by Special Kids and how he spreads the children's inspirational messages. When we as adults get down due to our job, bills, relationships, or daily woes it's generally a child that puts life truly in perspective for us. They remind us to work on gratitude, loving ourselves and others, and giving all we can to the gift we have been given in our health and life. Sometimes we get so down over things that are truly minute in comparison to what these children endure. I also see that many of these kids believe in themselves more than we adults ever believe in ourselves. It's a reminder to stop and enjoy the little things, to not accept anything less than you deserve, and to always give back. So what inspires you? 

I hope everyone has an amazing Christmas. 
Happy Holidays everyone from our family to yours. Love Jenn, Mike, Emily and Angel Jude. 

Friday, September 28, 2018

Updates and Benches

So a quick update. My MRI was clean, bloodwork says I am healthy as a horse, and the only thing that was off the charts was my Ebstein Barr antibodies. Which the doctor said was an indication that I had mono some time in my life. The strange thing about being involved in a tragedy like losing your mother very young is you become a bit of a family focus. I can promise I never had mono or my family would have known. Not even anything that resembled mono. So the doctor still maintains they believe I got something viral that attacked my facial nerves, muscles, and possibly my brain. So if I see anyone after this it will be the neurologist. Which I do still have ringing in my ears and I battle headaches but overall I am much better than I was! I personally think this WAS mono which explains the antibodies and is why I couldn't get out of bed. It's the reason I felt so incredibly exhausted for so long and we finally tested for autoimmune at a point the illness was going away. Again it's all just a guessing game. So my lasting effects may be the ringing in the ears and the eye swelling when I am tired or stressed. I can live with that. I feel like I can live with ANYTHING after feeling so crummy for so long. 

So yesterday we had a buddy bench installed at Jude's elementary school which will promote inclusion, friendships, and smiles. It will also be a lasting memorial to Jude. The school provided a dedication ceremony and it was very touching and emotional. We were grateful for their kind words about Jude and their memories of him. I miss him every day. It was so great to see Jude's nurses who attended.  Sometimes it's hard to convey to people just how much. I miss going home and holding him as we watched TV and how he loved to snuggle. As I drove away from the school yesterday I thought I could see Jude sitting on the bench and he was smiling. I am sure he was. 

Thursday, September 20, 2018

To curse or not to curse

(From 9/19)

I once read an entry to a blog that said if you can’t take a little cussing about a difficult situation then you shouldn’t read my entries. I’m on that same wavelength these days so I tend to share the same sentiment.

My husband isn’t feeling well and I know it’s from stress but if anyone is strong it’s Mike Ortiz and I know he will be okay. However keeping his stress down is something I would like to see people put more effort into controlling. He has been through a lot in the last decade and I would like to keep
him as healthy as I can. Sometimes I feel like people work against him as much as they can to make things as hard as possible. 

So this morning I woke up about 3am with an incredible headache and I could feel my right eye in its heavy position. So I confirmed the issue in the mirror and tried to go back to sleep but the sandman skipped my house. I knew that I had pushed myself to complete my quotes at work and the screen time had probably taken its toll along with multiple other tasks I’ve been trying to compete. My work was ever understanding that I needed an hour to rest before charging into work. I feel like when I’m out or late the brunt of my work falls on my friend and coworker Paula but she never complains. I finally scheduled my MRI, let’s hope I have the courage to complete it. I feel like such a wimp that I cannot complete something as simple as an Mri. However part of me feels it’s just a damn waste and it’s not going to show a thing. I want the MRI to be clear but on the other hand, I would love to find something that can be easily cured to stop this ringing in my ears, fatigue, and multiple other issues.

With that all being said I realized a few things tonight. That even though I have a serious situation going on I am still NOT a victim! Lately, I’ve struggled with this feeling because I’m
always on the go and suddenly I cannot go go go. When I felt like I couldn’t get out of bed I felt trapped and like a miserable piece of crap but that’s not the case. I realized God gives us the capabilities to handle every situation, it's just up to us to use what's been given to us. In our case life has dealt us a lot of tragedy that makes us a victim but we don't have to feel or act like a victim, does that make sense?  

There are a lot of times in life we can all act like a victim. 

1. When we have something catastrophic happen
2. When others have tragedies and we live through their situations. 
3. When it's easier to blame others for the hand you've been dealt or the hand you created. 
4. When we cannot forgive and let go
5. When we don't take responsibility for how our actions affect our lives. 
6. When we constantly feel sorry for ourselves and feel like everyone is judging us. 

So it's a matter of putting our big girl or boy underwear on and pulling ourselves together.  I figured the only thing I can do during my situation is to continue to smile and do my best. If I am late for work, I still made it to work. If I need to cancel plans with others to rest, then that's what I will do. I will work on complaining less about my pain but understand that expressing frustration is also healthy. I will continue to march on!