Letting Go

On this last (extra) day of February I feel it's fitting to post this photo. My dear friend Jen L Baker's daughter, Jessi, passed away just a couple of days ago from congestive heart failure due to CHDs and leukemia, etc. As you all know my daughter, Angel Jess passed away from CHDs and Ischemic Bowel Syndrome 5 years ago.

My heart has been so heavy knowing that my dear friend and her family are going through the heartbreak of losing a child too. A lot of what I went through with Jessica has come back to me. Watching Jessica take her final breath and watching her heart stop forever came back as if it happened yesterday. There are times that my loss feels so raw and all I want to do is hold my daughter one more time. As I count the months and years that go by at times I still feel as if I'm in that moment again, telling her to go to the light while on the inside I was crying, "Don't leave me!!!" That's the ultimate sacrifice. Thinking of her welfare above my own. That's what Jen had to do as well.

Praying for your child to be taken in order for their suffering to end is the least selfish thing a parent can do for their dying child. We fought for our daughters their whole lives, getting them the best care they deserve, best possible education, best therapies, home nurses, fighting with insurance companies, medical supply companies and sometimes fighting with doctors and other medical professionals to LISTEN to us because we're the ones who are there 24/7 and we know our children better than anyone else. For 22 years + 4 months for me and almost 22 years for Jen, the last thing we ever wanted to do was to pray for our daughters to leave us but when they have fought so long and so hard and are so tired.... that's when we tell them that it's time to go. We say that will be ok even if we feel like we're lying to them, that's what we say so that they will be able to go. Because we love them. that. much.

I don't have all the answers but grief is something we all must endure sometime in our lives. Grief is messy, it's ugly and it attacks at a whim. There is no timeline for grief and if you think that there are only 5 stages to it or that they come in a particular order, ... you're wrong. Grief has made me say things I never would have said or cried when I never would have cried. It has made me tired, achy and depressed. It has also made me more compassionate and to see the eternal aspects of life with a whole new meaning.

Please be patient with those of us who are still grieving or have just begun this very difficult path. Parents of special needs, medically fragile children like Jen and I have experienced what they call "Anticipatory grief" for many years, not from us sitting around feeling sorry for ourselves, but from watching our children fight for their lives again and again and again over the years. Having medical professionals tell us that our child could die at any moment doesn't help that anxiety any either. I have suffered from PTSD for many years having seen my child go through countless hospitalizations, many surgeries including 5 heart surgeries, suffering strokes, being blind and paralyzed, etc. Jessica's death was the ultimate cause of PTSD and I still have flashbacks of the most difficult times in Jessica's life and her death. Her long, painful, difficult death.

This life is not one for the weak of heart.... except that I used to be one of those. I used to throw up in the downstairs bathroom as soon as I got to the hospital before I could go upstairs to see my newborn baby in the PICU when she was first diagnosed with her CHDs. There were times when I had to pray to God saying, "You gave me this child, please make my stomach strong enough that I can change her bandages without throwing up on them." I was one who sat and prayed over her for hours at a time, walking the halls of the hospital with her, doing therapies with her and sitting up with her at night giving her breathing treatments so that she could breathe to live one more day. I was the one who stayed up all night with her as she got older because her anxiety got so bad at night. I was the one who spent the most time with her and did the most for her... and I was the lucky one. My husband had to work to provide a roof over our heads, my sons had to go to school. I was the one who got to spend time watching tv with her late into the night, talking with her, listening to her, calming her fears and holding her. I am the one who benefitted from her beautiful spirit the most and I would do it all over again in a heartbeat if it were asked of me to do again.

I know that a lot of other CHD moms, dads and other parents of medically fragile children have been down this road. I know you sacrifice a lot for your children and I see you. I see your sacrifices and your pain but I see the love that you have for your child and it makes me smile. Big.

So on this last day of CHD Awareness month I want to leave with you this image of my husband and I saying 'good bye for now' to our beautiful angel. Far too many CHD families have to say good bye to their children because CHD or CHD-related diseases claimed their lives too soon.