This has been on my heart for a long time. I hope it is not ill received, nor taken in a way that it is not intended to mean.
I want you to know that my heart goes out to you and my words are meant to encourage you, not to hurt or discourage you.
I know, first hand, the fears that you face. I know the heartache of learning that something isn't right with your child. I know the fear that paralyzes you, clouds your vision, runs your life, and takes away your sleep. I know the ignorance that is lost and how reality slaps you in the face over and over again when you realize that children get sick and die far too often.
I know the feeling of not being in control- watching your child fight for his or her life and not being able to do a darn thing about it. I know what it's like to watch your child code in front of you. I know what it's like for doctors to know what the problem is, but not really know the "right" way to fix it.I know what it's like to be thrust into a world of medical terminology and procedures and not have a clue what in the HELL is going on- but somehow you have no choice but to make decisions about things that you simply have no frame of reference to understand and hardly enough time to educate yourself.
I know what it's like to see your child's soul leave his body and enter into the presence of Jesus.
I want you to know something. I don't claim to have the answers, I don't claim to know exactly what you are going through. I don't claim to be completely right. I can only claim what I, personally, know to be true from my own personal experience with a critically ill child.
Please hear my heart and know that I am here for you. Please don't take my words as insensitive- my words are a reality that, I believe, each of us knows all too well. It is something that we have to live with day in and day out- whether we like it or not.
I often find myself grieving with parents who are fearful of their child's future. I find myself in tears over the thought that another mommy and daddy could find themselves in the same unfortunate "club" that Shane and I are in. I often times get overwhelmed with the thought that another innocent life could be taken too soon by an awful disease, sickness, or accident.
But I want you to know something- IF death comes, there can and will be life after. You WILL survive.
I know that sounds insensitive and harsh. I know it's something that most of us don't even want to think about. But it's the truth. Please hear me out.
Death hurts. Grief is a nasty villain that steals every last ounce of energy from you. Your life will be shattered and broken in ways that you cannot even begin to understand. The pain will grip you, having it's way with you while completely changing every fiber of your being. Faith will become hard, relationships will become messy, and joy will be hard to come by. But there is hope. There is life.
We are almost a year into this journey of grief. I can honestly stand before you and tell you that the first few months or even the first year are the hardest. But for as painful as those first few months are, there is still life to be lived, even when you don't feel like living it.
Joy will come slowly. It will come in ways that you never expected it to. It will catch you off guard and make you feel guilty when you first experience it. But it will come and it will increase as time moves forward. The pain will still be very real and very raw, but you will find ways to cope. You will survive!
Living life with a critically ill child means living every parents worst nightmare. It means facing the reality that your future may or may not include your child by your side. It means looking death in the face and realizing just how fragile life is. But it doesn't have to be paralyzing.
Living with a critically ill child means living life to the fullest. Enjoying every second you have with your little one, trusting that whatever the outcome, you will be surrounded with love and support by those who have walked this awful road before and with you.
If you find yourself thrust into the world of grief, know that there are SO many of us who are here who are willing to walk along side you, support you, love you, and pray for you. There are so many of us who understand. You are not alone. We are here, willing to love you in any way, willing to help you navigate through the deep and dark waters of grief. We are here, willing to provide you with the hope that you need to know- that there is, and will be, life after death.
I write these things because I love you. I want you to be able to live. I want you to be at peace- no matter what the outcome. I want you to know that it will be hard and messy, but you will get through it. You will survive.
With so much love and compassion,