Sooooo....last week I went to a parent to parent volunteer meeting at the Hospice. I was so scared about going. Not sure if I was ready to help others who are going through or just went through what I had the unfortunate opportunity of experiencing...the death of child. I was stalling on getting ready, stalling on getting in the car...actually having anxiety attacks about it. When I got there. There were 7 other moms who have lost a child...within the last 5 years. Each of us got to tell our story to everyone. Most of the kids that passed away, did because of cancer...I really hate cancer...I really do. Their stories were heartbreaking. There was a 12 year old that just wanted to live long enough to become a teenager...to experience what all 13 year old experience. There was a 2 year old that couldn't beat cancer after having a marrow transplant a few weeks earlier. There was a 7 year old that loved Disney. Oh man....I couldn't stand it. Now I understood that I wasn't alone. The box of tissues were put to good use in those few hours. There was a child who had a seizure disorder who ultimately passed away because of his weak lungs (yeah...this one hit home...a little too close).
I sat there wondering if i even belonged there. I mean, I only had 2.5 days with Nick. I actually felt/feel very cheated. I explained to the women that I was so excited to be pregnant with twins...I mean...what a blessing, what a double blessing. I told them that I still feel very guilty about my body not being able to carry them longer than just 23 weeks. I told them how beautiful my babies were. How proud, yet very scared I was when I saw my twins for the first time. I was a mommy of two very tiny but perfect babies. I remember staring at Nick and looking at his beautiful blond hair, his perfect little fingers, his tiny little nose...but I never got to know his personality. It was probably a very strong yet compassionate one to be able to let go and go to Heaven. I told them how I felt. Like my world was no longer. I was numb...I was no longer the same person. I felt like part of me died with my son.
I then asked the hospice workers that gathered all of us together if there was any place here for me...I mean...I only had my son for a few days...they told me that I was there because of that reason. That there are SO MANY parents that are in a NICU situation. Preemies, babies born with problems like genetics and infections. Babies only given a few hours, days, or weeks to live. Parents like us who were blessed with twins yet only one makes it home. Also parents like us who have a chronically ill child with special needs who, don't know from one cold to the next, from one seizure to the next, if that will be the last. Will I use hospice for services for Kenny? No, but they do have an awesome Child Palliative Care program that I may look into. I have had so much help from others through hard times, that I want to give this back to those that are going through a similar situation.
So yeah...I will be helping families that have/are going through what we went through...And yeah, I am very honored about doing this. I plan on doing this and doing this wholeheartedly! I finally found a purpose for what I went through...losing Nick, having Kenny in the NICU for 129 days and also dealing with Kenny's chronic problems...I finally found a purpose.
I have been feeling really down and exhausted about everything. Feeling exhausted about meds, feeds, living day to day with a child who cant talk, is developmentally delayed...by...a lot. A child who understands but cant express, chokes on some foods, lines chairs and cans up (every minute of every day)
I also decided that I am gathering all my resources and starting my foundation, Milestones for Micros (as I said a few posts back), this will help those families that have a child in the NICU with some things they could use while their miracles are in there along with our "milestones" shirts for their preemies when they come home and for their first couple of birthdays. It will also help those that have lost a twin while in the NICU and will have to carry on the weight of a death of a child and the survival and possible long term conditions with the surviving twin. I will be holding fundraisers for this and for the March of Dimes...Team Tomecko (click on the words to get to the link)...so if anyone wants to donate or knows any company or business that wants to help out, please let me know.
OK...Back to the laundry and cleaning up after Kenny who is STILL obsessed with lining chairs and cans up.