Wednesday, January 11, 2017

Life's Purpose

One of the things that Mike and I keep discussing is trying to find our purpose in life again. When you have a medically fragile child your life completely revolves around their care. Even though I did make time for Emily's needs and projects we all still had to structure our days around Jude's needs.  We are just now getting to the point where it's not strange to arrive home after 5pm since we don't relieve a nurse. We are just now not looking at a clock at 8:30pm to administer important medications. There are a lot more "just now" situations but I will stop and just say that it's a very odd feeling to not have a structured routine. When your life is strictly scheduled for so long and the person that you structured it around is gone you feel a bit lost. You catch yourself in deep thought wondering what your life's purpose is now. 

On our way home yesterday Mike was again reflecting on this and I pointed out to him that he is still a very important part of Emily's life. He then pointed out that Emily has been educated and raised by us in a way that has made her a wonderful human being. He felt like there wasn't a lot more education to provide because it really rests on her shoulders now. I can understand how he feels and how a grieving parent feels a bit suspended in disbelief and searching for answers. I know the answers are out there and as time drops through the hourglass the answers will begin to emerge. 

Another thing we find challenging is all the firsts including holidays, birthdays, and of course Jude's upcoming Angelversiary. Birthdays seem to have lost their luster and seem a bit futile now. Although I am still a dedicated blessed mother the thought of Mother's Day seems sad to me too. Gina invited me to a marathon on mother's day weekend but I nicely declined. I still just don't want to commit to anything right now. Her response was epic! She said, "I am sorry. I am not going to stop inviting you to do things though. My feelings never get hurt when you cannot make it. One day you will want to start doing things that are hard and when you do I will be there." GREAT response from someone who gets it, she even gets my crazy driving anxiety. Gina was at our house to see Jude at least once a week for years upon years. Sometimes she would come over just to sit with me while I watched TV and held Jude. She knew my routine and she knew I couldn't leave often. Yet she still took the time to come see him and come see me even if it was so very boring. She was over so often she knew how to position Jude, suction him, give him his meds, and what calmed him down.  Because I was grieving so hard right after he passed I could do very little to help with anyone else's loss of Jude. The other night Gina said she went to see the movie Collateral Beauty by herself (if you don't know about the movie you might look up the premise). She text me to tell me she cried the entire way home and I got it. She was missing Jude and was touched by the story. Nurse Allan still texts Mike and I both, "Good Morning Glory" every Friday, Saturday, and Sunday. He would always say that to us with his bright beaming smile every weekend. He says he cries often and misses Jude and our family. We miss him, Charlotte, and Candice, his great nursing team. I found this quote which is fitting "The death of a child is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people." John DeFrain

Jude affected many many people. 

Monday, January 9, 2017

The Book And The Child

I got a notification from Amazon today that there are only 12 copies of Jude's book left in stock. It is officially released 2/1/2017 but several people have told me there delivery date is 1/11/2017 and I noticed the ability to review the book is now open on Amazon. So it seems they have already received all their copies and they are on their way. In addition it looks like they will be ordering more copies to be available in the future. It's surreal to see his story is going to be available to so many people. I have been at a few places with pre-release copies of the book. The interest is mixed with people when I meet them in person. They will stop and read the premise of the book and either become highly interested or back away frightened/sad. One lady told me, "that's just to sad there is no way I could reach that story." I replied "I know I lived it. It IS sad and I totally understand." I respected her opinion. 

Meeting that lady made me think of how many people tell special needs parents, "I just couldn't do what you're doing." Sure you could! Tragic circumstances happen all the time. As humans we are fragile and in mere seconds out lives can change. Mothers and fathers are joining my loss forum all the time who merely put their child/teen to bed and that child never woke up. Random chaos happens all the time and it makes up this battle we call life. The majority of us all love our children and will do whatever it takes to make sure they have an amazing life. I have said before we aren't super hero's we are merely parents who love our children who are doing the best we can. That applies even now that Jude is gone. I am doing the best I can. I am grieving "okay" today and although I still deal with anxiety I am here and I am functioning. 

We have to go pick up the Christmas decorations from the cemetery and I would like to replace them with a Superman wreath. My friend Gina and I were talking about making one. We will start on that soon and pay Jude a visit. 

Amazon Link: https://www.amazon.com/Diary-Baby-Stroke-Jennifer-Ortiz/dp/1942557841/ref=sr_1_1?ie=UTF8&qid=1483985184&sr=8-1&keywords=the+diary+of+a+baby+and+a+stroke


Thursday, January 5, 2017

College and Life

At the end of this month we are taking Emily to visit the University of Arkansas, she received an acceptance letter from them. Then in February her dad is taking her to the University of Alabama. Emily is still waiting to hear from a few other schools but Emily was accepted as a freshmen into the college of nursing at the University of Alabama. She will ultimately make the decision and she is going to announce it live on Facebook in March. However being accepted into a nursing school as a freshmen is a huge accomplishment. I am not sure another college can trump that offer but I am holding out hope A&M has something for her. I would like her close to home but I also understand that an opportunity like what she has just received does not come along very often. I think my heart is already grieving a little more because I cannot imagine her vibrant soul not being around everyday. She just recently spent a week with her dad and our house was very quiet and not as lively as it normally is. I am very proud of her but at the same time I know this isn't going to be easy. 

As mothers we spend our whole lives raising our children to the best of our ability. I always told myself I wasn't raising a child but raising an adult. I wanted Emily and Jude to be responsible adults who worked hard and that are kind to others. I figure we do a really good job of being a parent if we keep our children safe and get them through childhood safe, healthy, and educated. Unfortunately with Jude I had no choice but to see another side to life too. The side that just kept your child fed, comforted, and loved. Education was therapy for Jude to help him function the best he could versus expanding his knowledge and GPA. His feedings were never about taste or entertainment it was merely survival and his health was always compromised. Although I don't miss the hospitals I do miss sitting with Jude. I would pat on him while we watched Maui Real Estate together and waited on the doctors to trickle in and out of his room. I think it's the quiet moments we had alone that I miss more than anything. 

Yesterday was a hard day for several people. I noticed Jude's nurse posted on social media that she was really missing Jude yesterday. My aunt texted that night and basically said the same thing. I told her in one of my groups I saw the best reply to the question, "How are you doing?" The gentlemen said he replied, "I am grieving okay today." I told my aunt that it's a good response from everyone that was surrounded by Jude's light and love. 

So both my children will be physically gone from my house soon. It's something I am struggling with but how proud am I that my child wants to be a nurse? Emily has decided to compete one more time for a teen title, but with a different system, so we are planning that together. I think it will be one nice last event for us before her official adulthood starts. I hear my grandmother in my voice when I tell Emily to cherish every second because it goes so fast. 

Monday, January 2, 2017

Stone Soup Take Two

After Jude passed away I posted a blog about an old story I used to read called, "Stone Soup." http://cjengo.blogspot.com/2016/04/stone-soup.html 
It was basically explaining that I was empty right after his loss and could only fill my pot with water. I also really didn't want to have anyone add anything to the water to make it soup. Slowly over time I have opened up more to allow others to contribute to my family's healing and start making soup filled with love and memories. 

Yesterday I heard someone reference Tear Soup and after researching I found that this was actually a book. I have not read it yet but I thought how interesting the concept of tear soup is. Not everyone likes tear soup and therefore you cannot expect everyone to contribute, taste it, or even want to smell it. However some people are always there to help you care for your soup and help your soup find it's purpose. There is nothing wrong with either of those choices. Some people can handle traumatic situations and some people prefer not to.  Over the course of the last nine months, can't believe it's been 9 months, I have found that I have to grieve in my own way. I cannot expect others that have not lost a child to understand what I need or react in the manner I expect them to. Therefore I must explain if I need something, if I need a break, or what makes me feel comforted. I have terrible anxiety especially regarding driving. Any trip that takes me outside of my comfort zone on large busy highways will leave me racked with anxiety and the grief so much worse. I have no idea why this has happened but my understanding is over exaggerated reactions to traumatic situations is very normal. The positive portion is I have good friends that are helping me with my tear soup that understand this situation and go above and beyond to help. 

One of the complaints I hear over and over in my loss forum is how the individuals grieving feel like others are hurting them more with their words or actions. I am far enough into this journey that as I stated above I have learned the healing starts with me. I must express what I need or don't need to make a positive proper impact on my life and my family's life. I am thankful that the I was blessed with this knowledge because it's brought me comfort and understanding.