Monday, January 11, 2016

Time Flies

It has been 1 year, 7 months, and 22 days since my last blog post.  Between work, my 15 year old (yes…15!) two dogs, Kendall, Justin, Facebook, Instagram…well, blogging has gone by the way side. 
I realize that I didn’t post about Kendall’s 1st grade year.  So many wonderful things happened during the school year for her last year.  She continues to thrive socially, drive her chair, progress in her literacy, use her communication device, and vocalize her joy, anger, and excitement.  She is sleeping better these days and her health is relatively stable.  With the addition of a new continuous blood glucose monitor assisting us in her Type One Diabetes management, her Hemoglobin A1c’s are the best they’ve been in years. Her vesicostomy has eliminated UTI's from our vocabulary, and Botox continues to delay our inevitable hip surgery.  I don't talk about seizures.  Ever.    

While the past year and seven months has been filled with much happiness, we have faced some loss too. A couple February’s ago, she lost vision in her left eye completely.  This was a huge punch in the gut for us.  The short story is, she developed a Strep infection that latched on to her shunt and it had to be removed.  The infection and trauma to her eye was so great, it detached her retina.  We did everything we could to save it, but just couldn’t.  She is adjusting accordingly.  She is so strong.

This past year I also lost my mom.  Kendall lost her biggest cheerleader.  Every single blog post I have written in the last seven years, I guarantee my mom was somewhere in my house holding Kendall, rocking her, reading to her, massaging her, singing to her, or praying for her.  She did these things because she loved that little girl with every part of her being.  She also loved me the same and wanted me to have breaks.  She frequently hugged me and held me encouraging me that I was doing a good job raising my kids.  There wasn’t a day that went by that I didn’t talk to her and receive some words of encouragement.  To say there is a void in her absence is an understatement.  My world stopped.

The month after my mom passed, our beloved nurse, Angie, who was with Kendall since she was 14 months old, moved away.  Another loss that cut deeply.

Grieving for my mom opened my eyes to so many things.  It changed my perspective on what is important to me.  In times of loss, you really do see people’s true colors.  I received so much support from so many people (and unfortunately, there were also people who I once really cared about that I will no longer bother with ever again.)  But mostly, I was overwhelmed with the kindness shown by those who didn’t even know my mom, but wanted to be there for our family.  Donations in lieu of flowers went to the Cook Children’s Foundation and were set aside for the sibling programs. I am embedding the video played at her memorial.  I know my mom would have been proud.

Through the many days of sadness in the past year, especially the weeks leading up to her final breaths, I was able to develop a sense of peace.  Not just with my mom, but with Kendall too. Dying is inevitable.  But living, living happy, that is a choice. 

I could focus on the things Kendall still can’t do, or feel sorry for Justin, Kamden, and myself that Kendall still requires 100% care and we can’t do things normal families can do.  But I choose not to feel that way.  I choose to celebrate every breath she takes.  I choose to focus on the positive and celebrate the goodness in the people who take time out of their lives to help and be blessed by Kendall.  I am grateful for Kendall’s grandad (my dad) who lost his soul mate of 50 years, but continues to show up each day to get Kendall off the bus with a smile on his face!  (he also showed his love and loyalty to my mom by staying by her side non stop until her very last breath) 
I know we are blessed.  Some days it is harder to recognize that.  But we are.

So, since I don’t know how long it will be until my next blog post….for those young families that may have just received a devastating diagnosis and are frantically searching the blog-o-sphere for encouragement, please know this:  You can do it.  Just look back to my first post and seven years later….this girl continues to prove the Dr.’s wrong!

In Loving Memory of Roxie O'Rourke (aka Nonna)


Reagan Leigh said...

Oh Jocalyn, I can't even begin to imagine what you have been through! Your mom was an amazing lady who obviously touched so many lives! I know you miss her terribly! I know she must be so proud of you! Kendall looks amazing and so do you! Your family is always in my thoughts and prayers. 💕 Big hugs to you and your precious girl!

karen said...

my son have been a patient of epilepsy . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day when going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the sleepiness and the abnormal behavior stooped ,on thing now he is so full of life. I would recommend this to all my friends,families,around the globe suffering from can contact him through his email on advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

Richard William said...

Am Richard, I am here to testify about a great herbalist  man who cured my wife of breast cancer. His name is Dr Imoloa. My wife went through this pain for 3 years, i almost spent all i had, until i saw some testimonies online on how Dr. Imoloa cure them from their diseases, immediately i contacted him through. then he told me the necessary things to do before he will send  the herbal medicine. Wish he did through DHL courier service, And he instructed us on how to apply or drink the medicine for good two weeks. and to greatest surprise before the upper third week my wife was relief from all the pains, Believe me, that was how my wife was cured from breast cancer by this great man. He also have powerful herbal medicine to cure diseases like: Alzheimer's disease, parkinson's disease, vaginal cancer, epilepsy Anxiety Disorders, Autoimmune Disease, Back Pain, Back Sprain, Bipolar Disorder, Brain Tumor, Malignant, Bruxism, Bulimia, Cervical Disc Disease, Cardiovascular Disease, Neoplasms , chronic respiratory disease, mental and behavioral disorder, Cystic Fibrosis, Hypertension, Diabetes, Asthma, Autoimmune inflammatory media arthritis ed. chronic kidney disease, inflammatory joint disease, impotence, alcohol spectrum feta, dysthymic disorder, eczema, tuberculosis, chronic fatigue syndrome, constipation, inflammatory bowel disease, lupus disease, mouth ulcer, mouth cancer, body pain, fever, hepatitis ABC, syphilis, diarrhea, HIV / AIDS, Huntington's disease, back acne, chronic kidney failure, addison's disease, chronic pain, Crohn's pain, cystic fibrosis, fibromyalgia, inflammatory Bowel disease, fungal nail disease, Lyme disease, Celia disease, Lymphoma, Major depression, Malignant melanoma, Mania, Melorheostosis, Meniere's disease, Mucopolysaccharidosis, Multiple sclerosis, Muscular dystrophy, Rheumatoid arthritis. You can reach him Email Via / whatsapp +2347081986098    Website/