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. 

Friday, December 30, 2016

Thank You Heather Spohr and Finding Purpose

After I wrote my blog yesterday I wandered over to "The Sophrs Are Multiplying" and read Heather's entry for the day. Heather Sophr is a brilliant writer and someone I feel I know even though we have never personally met. I began following her story back in 2008 when I found out I was pregnant with Jude. About a year after I followed her story she lost her daughter Maddie, ironically also in April. I watched her grieve through her blog much like I have done. In fact I remember reading a post she put up about reading obituaries after her daughter passed and I have done the same with Jude. I would read Jude's tribute and look at the others that passed as well. I found a poor little boy drowned on the same day Jude passed and his services were held at the same facilities the day after Jude's funeral. That must have been a horrible weekend for the funeral home and the church. I have no idea why I would want to even read that information but I was drawn to it. Maybe it was my own way of wondering why little ones suffer and trying to find some answers in the universe. Without knowing it Heather's posts from all these years have helped me since I lost Jude. She taught me that being expressive and open about my feelings can help heal some of the broken lines within my soul. 

Yesterday Heather helped me again. As I read her entry I began to shed a few tears, http://thespohrsaremultiplying.com/living-with-loss/its-okay-to-live/#axzz4UFrkdbph. She touched on a subject that Mike and I have both discussed. Neither of us would prefer to be on this Earth without Jude but we made a decision to live for him. We also live for Emily but we feel like Jude would want us to continue our lives in the best way possible. I am sure we will eventually live for ourselves again too. I will admit I have been wallowing in grief and in a very dark spot but I believe that is perfectly normal the first year or two after losing a child. Actually I don't think you ever heal from losing a child but you can find happiness and meaning again. So last night I began wading through my cedar storage chest looking at memorabilia of Jude's only to stumble upon so much more. I am a pack rat and I save anything that seems special or from the heart. I began opening cards, drawings, and more items that people have sent over the course of Jude's life. I began crying realizing how much everyone truly did love Jude and how much he impacted their personal lives. I had hand written notes from my grandmother, drawings from Emily, and even a large birthday banner Gina made for Jude with a personal message written on the back. It was humbling and truly touched my heart.  

Last night I got on my new treadmill and walked two miles while watching, "The Crown." My diet starts on Monday which consists of zero wine or sweets and I am already a little sad! However I figure I am searching for away to find happiness again. Heather mentions finding purpose in her blog and that's also something I have been searching for. In the midst of grief running a mundane life of getting up, going to work, coming home, and doing it all over again can be taxing. I am eternally grateful for a good job but I feel there is something else out there. I am not sure if that's adopting children, continuing to write, or what my purpose is but it's out there somewhere. My goal is to find it. 

So thank you Heather for blessing my life from afar.

Thursday, December 29, 2016

Christmas And A Princess

I know people are wondering how our Christmas was and I have taken a few days to find the proper words for the blog.  On Christmas Eve we had multiple people over to our house to celebrate the holiday and complete a lighted balloon release for Jude. Emily captured the blinking lights in a photo she took. 



As we set the balloons free everyone was in awe at how high they flew and how the lights were easily seen. We knew others would see them and we hoped they would make them smile. I know Jude was smiling. 

Christmas day was more somber. It wasn't just Jude's loss but the fact that he always had a loss of sorts because he could never truly enjoy stockings or Santa. He deserved to have a good Christmas with family gathered around, movies, gifts, and more. However I soon realized Jude could enjoy love and that is the true meaning of the holiday. So even though we missed him dearly we remembered the good times and after shedding a few tears we all smiled. Our little family went to see Star Wars Rogue One that day because we are huge fans and we truly enjoyed ourselves.  We went to the Movie House and enjoyed lounging in the seats and eating wonderful food. We also left a very nice tip for our adorable waitress who truly seemed to enjoy working the holiday and had a beautiful festive smile. The rest of the day was spent fairly quiet and reflective. 

With the mention of Star Wars I reflect on the loss of Carrie Fisher. The thoughts are split in my loss forum between being incredibly sad for her family and being angry a celebrity receives so much attention, when the loss of our children is so great. I am one of those that is sad and feels for her family. I posted on Facebook that I am a 70's child. In 1977 my dad took me to a drive in theater to watch my very first movie and I was introduced to Princess Leia and Luke Skywalker. I loved the entire move and when The Empire Strikes Back came out I watched it 14 times in the theater. This was back when your parents could drop you off at the movies and know you would be safe.  I wanted to be Princess Leia and even though there is a plethora of princesses offered by Disney now the only Princess I ever dressed up as was her. My two icons were Leia and Wonder Woman. So even though it's not even close to losing a child I still felt a loss of my childhood and therefore I felt very sad. Then yesterday we hear Debbie Reynolds her mother also passed. A legendary actress herself that accomplished so much in life. I think the loss affected her heart and with her age that led to the stroke. I feel for her family and the tremendous loss they must be feeling. I can understand why her heart hurt so much that her life just ended because the pain sometimes feels unbearable. As evident by Mike's heart issue, grief can try to kill a person. So Debbie sing a little Charlotte's Web to my son if you don't mind. He loved that movie and we watched it so many times together. Thank you both for so many amazing childhood memories it is much appreciated. Traveling Mercies. 


Wednesday, December 21, 2016

The Dream

I dreamt of Jude last night which is very rare. I like dreaming of him but this one had a bit of a sad ending to it. I was in this large place with a lot of people around and two little boys asking me about skating. Jude's nurse was near us and I saw another person in scrubs pushing Jude in a hospital bed down a hallway. Jude was upset and crying out like he used to and thrashing about. I told the nurse I was afraid he would fall and she assured me the aid pushing the bed was very good and wouldn't let that happen. So I began walking towards the bed and said "Ju Ju Bean!" in a loud happy voice. Jude sat up with the biggest smile and said, "MAMA!" The aid looked surprised and said, "well that's new." Suddenly Jude fell forward and I went running towards him because I was afraid he would hit his head but Jude caught himself with his hands. Jude could not do that when he was alive. I hugged him tightly and he hugged me back. We were both very happy. Then suddenly I remembered Jude was gone and I asked him, "Do they let you play in heaven?"

Jude just smiled at me but then he was gone. I was left sitting there holding a sheet crying very loudly for him. I woke up with tears running down my face and missing Jude. The dream was oddly comforting and sad all at the same time. I am not sure what the dream means if anything and I am sure there are parts I am not remembering. I am rather emotional today because of it. Like I have said before you have good days and bad days and this seems to be a so so day. 

I will post pictures of our balloon release for Jude that we are doing Christmas Eve. I am asking everyone to light a candle for Jude this weekend. 

Merry Christmas.