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 to say 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. I was flat out told this when I won my 8th appeal for nursing for my son.

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

11. If your child doesn't have trunk control to sit look into Danbar Hensinger head support, A Bumbo chair, The Tomato seat, and a KidCart or wheelchair with a headrest. These are all amazing tools.

12. A G button or feeding tube sounds scary but it can be a huge blessing in disguise. You can give medications without fighting or throw up.

13. Lots of momma's are here with you and always available for you to ask questions or reach out to.

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.