What I am about to share here is extremely private and soul-bearing. I ask that you read it with a loving, non-judgmental heart, because I feel compelled to share it. These are feelings that I think many trisomy 18 (and other special needs) moms go through. And I know I am strong enough to share in the hopes that it will help someone else on their journey too. My prayer for Rebekah has always been that she would have a definitive purpose in this world to lead others closer to Jesus. So please keep any harsh comments to yourself and use this as a lesson in empathy and love.
I know it’s selfish, I know it’s not logical, and you’ll have to excuse my “me” moment… afterall, where would moMEnt be without 'me' in the middle?
I have always been and am still praising God for the amazing miracle of Rebekah. I am grateful for every day, every moment - even though it is stressful and exhausting. I do not regret her, and I wouldn’t give her up for anything. But I am having a moment of overwhelming helplessness and despair.
I have tried to be strong since her birth, preparing for both the worst and the best to happen. And I don’t think it started to be as draining for me until we got some recent medical assessments that just continue to emphasize what a fragile and short-lived life Rebekah will have, without God’s continuing grace to grant her time with us. Then I went to a recent playdate and saw some ‘normal’ children about Rebekah’s age sitting, walking, talking, playing… And it just hit me – this wave of utter despair and sadness. A grieving for what could’ve (should’ve) been and what will never be. Mourning for the day that will inevitably come, and a mourning for friendships forgotten in this lonely journey. I don't fit in anymore. There isn't a comfortable place for me.
And Lord knows, I have tried to lean on Jesus through this experience! Let’s face it; I can’t really rely on anyone else anyway. My friends of ‘normal’ kids just don’t quite get it, and I am sure they don’t want to listen to conversation after conversation about Rebekah. It might make them feel a little guilty because they have normal, healthy kids. It might make them feel uncomfortable seeing an ‘abnormal’ baby. It might (gasp) make them pity me. Oh no, I don’t need that one! I am right where I am supposed to be and there is a reason and purpose for it. I have no doubt about that. And there are even a few that were so supportive of my pregnancy and situation, but then when she decided to fight to live and we fought to save her, they disappeared into the woodwork also. And because I can't leave the house at a moment's notice, it’s been ‘out of sight, out of mind’, because it’s easier to ignore the relationships in our life that take more effort and energy. Believe me, I KNOW that. At this point, my relationships with anyone take a lot more energy out of me too, more than I think any of you 'normal' moms can ever know or appreciate. It is painful to see ‘normal’ every day and know I cannot have it. It is extremely draining to be strong for everyone around me and ‘pretend’ like life is great. And while I do have a trisomy family on facebook for support, they are busy and stressed too and, unfortunately, most of them are ‘virtual’ friends. At least, I guess, I know who my ‘real’ friends are these days.
Even though we have been faced with a better outcome than we had ever hoped for, it is still life-draining to daily wonder the fate of your child.
- Why can’t I just happy that my daughter is alive?
- Why can’t I just appreciate the services that pay for nursing and equipment?
- Why can’t I acknowledge the blessings in my four healthy adorable boys?
- Why are bitter feelings creeping into my soul, leaving me to feel chewed up and spit out?
- Why does serving others no longer fill me with joy, but leave me with an empty spot in my soul?
- Why am I all of a sudden apathetic about everything, wanting to sleep in and accomplish nothing worthwhile all day long?
- Why do little things people say about me that normally wouldn’t bother me all of a sudden cut to the bone and leave me a crying and self-pitying shell of who I know I really am?
- Why do I sometimes wonder what life would be like if Rebekah hadn’t made it? (Please understand that I absolutely would not want it that way, but these feelings still pop into your head as you play the ‘what-if?’ mental game with yourself.)
- Why, why. why...
So I talked to a few of my virtual friends because I have been feeling so down on myself for these feelings of jealousy, despair, ugliness, and apathy. I was afraid I was abnormal and that God was going to be angry at me for all of these selfish, and, yes, bitter feelings. Maybe he would stop blessing Rebekah because of my moMEnt I am having. I am truly feeling like Job about now, kind of forgotten and left to ‘rot’. Friends that don’t have anything supportive to say, other than it’s me that is the problem. And I know to some extent that may be true.
But I know something else too that was confirmed through conversations with other moms who are going through the same life journey… THIS IS NORMAL! Want to know something else too? It doesn’t matter what anyone else thinks about me and my situation. Despite how it might appear, God IS on my side and there will be a positive outcome to all of this inner turmoil.
Jeremiah 29:11 - For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
I KNOW there is a plan in all of this and for whatever temporary suffering we go through here on earth. I also know that the Apostle Paul went through some major suffering that bordered on depression. He begged for a different outcome, yet finally succumbed to the Lord’s will.
2 Corinthians 12:7-10 - To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
So there you have it - I am bearing my soul and sharing my weakness with YOU, who have read this far. My hope for you is that you will be blessed to know that there is a plan and purpose to everything and that God’s grace can cover up our weakness and make us strong.
And for those of you who may fall into the category of old and lost friends, know this… I love you anyway.
