Earlier today I received some news that we have now lost another child who was a member of our Infantile Spasms community (he was only 4 years old) - which caused me to flash back our son's passing -
I have been struggling these past few days - like yesterday - I just began to cry while driving down a road. The night our son left us keeps flashing in my memory after hearing we just another member's son. I keep replaying it step by step. Getting the phone call around 10 pm while sleeping with my oldest son - and picking up the phone only to hear that Brextin has taken a turn for the worst and that he was being placed on a breathing machine and that I needed to get to MN as soon as possible. I then quickly called my daycare provider who came over right away to help comfort me and to take my oldest son with her. (she only lives 4 blocks away) Then I called my parents and my in-laws to fill them in - my mom and dad came and got me and we quickly drove to the cities. On my way there I called every pastor that I knew and left messages asking for prayers then I started to text everyone I knew asking for even more prayers - I then received a call from Andy telling me that he was getting his color back and everything was improving. So I started to calm down. Then once we got to the hospital the ER has a special lock down so I had to push an intercom asking to get in to be rushed to the PICU - there was another family who arrived at the same time - their father just had a heart attack - we were able to hug each other for support (a total stranger) then once I got to the floor I heard a child who was babbling just like Brextin did and I thought everything was ok - until the nurse directed me to the only "glass" room in the unit - then I walked in to notice my husband holding our son- (who I thought was sleeping) only to glance up and notice my husbands eyes were totally bloodshot and that is when he said - "we have lost him" I quickly fell to the floor and just screamed - how could I have missed saying good bye to our son!! Especially since he was bouncing and babbling just the day before and even sucking on his fingers - where did everything turn ugly?? Then shortly after my parents entered the room as well - while I was holding our son with a breathing tube in his mouth (unconnected) and I had to tell them - we were too late to say our good byes - it was so painful to say those words! I even wore my shirt that read "Love and Hope for Brextin" in hopes of everything being ok - I continue to have save the same shirt since my son's blood remains on it and I will never wash it -
For some reason - I thought by me sharing or venting my story out one more time would give me peace - ooh how I miss my little guy - I sure do miss him this holiday season - oh how I miss him!!
We will be attending a local event tomorrow night - it actually a national event (World Wide) - at 7:00 pm tomorrow it is encouraged that everyone lights a candle in memory of the many children who have lost their lives so soon - I ask for anyone who is reading this right now - please please light a candle in remembrance of all of our children - thank you so much!