You first grieve the loss of the future for your child. This is not what you would have hoped for, wished for, desired for your child.
Then, you grieve for yourself. The whole world changes, not just the child's future but your own. Dreams have to be put aside for a time or forgotten. The level of intensity changes. It is a time to search deeply and ask God how to accept the suffering that you have just been given. It is a time to abandon yourself to the Blessed Mother and allow her to care for you -- comfort you -- the way she care and comforted her Son with her loving presence.
Grief comes in stages, as we have heard from many a renowned psychologist, but what you really need to understand about living with a chronic health diagnoses for yourself a loved one or your child, is that grief is cyclical. It will come to you over and over again, and typically will hit when you least expect it -- a song on the radio, seeing a pregnant woman (if you have a child with special needs or lost a child), a comment that hits you the wrong way in a vulnerable moment, i.e. you've had no sleep, you're run down, etc.
A strong faith life and a sincere trust that God will carry you, that His grace is sufficient -- as is told to us in 2 Cor 12:9 -- should be the ballast to which you cling through your grief.
Good friends that stand by you are also a source of strength and comfort, try not to isolate yourself when the grief cycle hits. It is perfectly fine to want to be alone with your thoughts, just not isolated in them."
Mary L - "When I was a young girl I played with dolls all the time, unless there was a new baby my Mom would let me hold. As the second eldest of eight and the oldest daughter, this was not as unusual as you would think. I remember caring for my three youngest siblings most of all. One thing I have always known is that I wanted to be a mother. I loved children and I babysat all the time. What joy children bring to my world.
When we were told Courtney would not be a typical child my mothers heart broke. The thought of not following the same path that we did with Jonathan was hard at first to grasp. I had no idea what it meant for our family at the time. I remember watching my nephew roll over for the first time when Courtney was two. I just watched in utter amazement at the simple joy in R's eyes that he had done it! He got to see the world from a new perspective because he understood he could move. Courtney does not roll over to this day. She does rock from side to side bit no rolling. I remember excusing myself from the room and quietly crying in the powder room.
What embarrassment I felt that day. I was pretty hard on myself struggling internally with the true reality of my life and future. This was not going to be easy. I realized then that this grief I was feeling over everything Court couldn't do was going to come in waves throughout the years.
There would be seasons of grieving. I need to accept that what I wanted for my daughter was not going to be. I was being called to surrender MY will for HIS will and I needed to be content with WHATEVER that was, either life or death for Courtney.
As Courtney has gotten older I have learned to celebrate each smile as a gift. When she laughs EVERYTHING stops and we spend time in the moment celebrating her joy. I try to recall these happy times when we are going through another trial. It gives me hope that I will hear that laugh once more.
God has also provided many miracles along the way that I thought would never happen. Her First Communion and Confirmation, both of which I never thought would be possible, are stories for another day. We are just so grateful to God for continually blessing us through this child.
This year is a bit harder for me than most I must admit. This year would have been her senior year of high school had things been typical. There would have been college visits and prom dress shopping and maybe even a beau. Who knows. What strikes at my heart is the loss of conversation with my daughter, talking about her dreams for her life, maybe even sharing the ups and downs of marriage and the experience of having children one day. These are things I talk with my mother about all the time.
My beautiful Courtney will probably never say "momma' or "I love You". This used to crush me and then one day I stopped to think about it and prayed for some peace of heart. God's answer to my prayer...she will be saying it for an eternity, so be patient.
So I acknowledge when that grief comes. It's a natural part of this journey. I no longer feel bad or embarrassed about it. Sometimes I write about it, sometimes I seek the comfort of my husband or a very dear friend and just talk through my feelings or cry. But each and every time, without fail, I think of the Blessed Mother who knew the outcome for her son and still she walked patiently beside him, encouraging and loving him until the end. I call upon her help to pray with me to her son who gave me this beautiful blessing, this innocent little bird to love and protect. Then I wipe away my tears and square my shoulders calling upon God's grace once again to fill in the gaps of my heart and be ENOUGH.
How can you not love this face!
Many years ago Jerry and I chose a scripture for our daughter to pray in time of crisis or grief.
"For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope."
Jeremiah 29:11
And so life moves on through the twists and turns of each day with a new adventure around the corner. Thanks for coming along for the ride...
Blessings and Grace,
Mary