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Tuesday, July 27, 2010

The 'ME' in Moment

I have not posted in two months. It's been busy ans stressful with many doctor visits and diagnoses. Then I just didn't feel like it. Until now...

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.


  1. Susan......I don't know what you are going through on a daily basis, but I do know trisomy changes who you are no matter what our outcome is. I will be praying for you for strength and encouragement. I have at times sat and wondered why not me...why didn't I get the chance to raise my t-18 baby like these other moms?? We all have these moments where our mind wanders and we wonder the what ifs....I was given a book and it helped me to see that my thoughts and feelings were normal for a parent who lost a child. There must be a book out there that you can go to and read and help you remember that your feelings in this moment are normal for you as a parent of a special needs child.

    I will be praying that God would continue to touch Rebekah and all of her different ailments. I would say be strong but as I have met You through f.b I realize you and all the other t-18 mom's are the strongest people I know!!! When you can, try to take a moment for yourself and recharge. ....even if its just a 20 min coffee break sitting in your car by yourself. My prayers tonight are for you and your family. I pray You sleep well without to many thoughts going through your head!!!
    Much Love
    Lisa Shaw

  2. Susan, I admire you for your honesty. This blog is beautifully written. Of course you are exhausted and of course you have all these emotions. I often wonder how you moms get through it. But then I remember that God is walking with all of us through our trials and that through Him we are conquerors. It's more than okay to cry out to Jesus and tell him how hard it is. He doesn't bring us to troubled waters to leave us and you have brought glory to him through Rebekah's life.
    With Love, Misty Rains

  3. Wow, you just said all I'm feeling tonight. And my precious son is only 6 weeks old. Every time I see your posts it hits home, probably because I spell my name the same as your daughter's. There is so much good and wonderful and right in my life, but I still feel that missing normalcy. I'm used to picking up right after the baby is born and continuing on with life very quickly. Now, just about my only trips out of the house are medical related, and it takes FOREVER to get everything together and make sure I don't forget anything. A friend recently reminded me that "having faith doesn't mean it doesn't hurt." And her husband responded with "God has big shoulders for a reason. We should use them to cry on." So I do. And I look to others like you for help too. Thank you for your blog. I needed it tonight.

  4. Hi Susan,
    I stumbled on your blog and am so thankful I did. I think that you have been incredibly brave in sharing your struggles today. Mothering can be an isolating time and having a baby who requires more time and places more demands on relationships than "normal" babies makes for an
    even more isolating experience. Please know that even though we are "strangers" I will pray for you. I will pray that you will feel refreshment in relationships that allow you to be honest. I will pray for friends who will love you, support you, laugh with you, cry with you and NEVER pity you!
    In Christ,

  5. ((((((Susan))))))!!
    I so know what you feel. There are times that all of this overwhelms me, and makes me feel so horribly inadequate!! And Miks is only 13 weeks old.
    You are brave beyond measure.
    You are an amazing mother.
    I said once that no-one can criticize me until they've walked a mile in my shoes- and oh my goodness... you've walked a whole lot longer.
    I don't think you should be hard on yourself for having a moMEnt. I said to my husband this morning... I don't know how much longer I can do this for! It doesn't mean I love Mikayla any less. But I can only do what I can do, and the rest is completely up to God.
    But I know you know that. And I just want to say, from the other end of the world, that you're an amazing woman... and Rebekah is blessed to call you Mom.
    Have courage. And Faith. And know that your virtual friends think and pray for you constantly! Because, like Rebekah, Mikayla is a fighter... and with no major defects AT ALL... I don't think she's going anywhere soon. And it scares the living daylights out of me!! Something other people may not understand... maybe not even you... but that's me having my moMEnt :-)
    xx Taryn

  6. Susan,

    I just read your blog and I am so glad to see someone else feels this way too. I feel bad because of some of the "what if" questions I ask myself. And then I feel bad because there are many mothers who have lost their T-18 children that would give anything to be in our shoes. But still sometimes I just get overwhelmed and feel like I just can't go on. I struggle with this everyday. Natalie is my world and I wouldn't trade her for the world. But it is so hard when all of my friends meet up for dinner and bring their kids to play and I can't bring Nat because it is outside and she is too sensitive to the sun and I have to bring her chair because she can't run and play with all the other children. And it makes me hurt for her too. I just don't understand somedays. I wished I didn't feel this way but I have come to terms that I just do and it makes me feel so much better to know that others do too. This is a hard job. We are soley responsible for a medically fragile child. Natalie doesn't have as many problems as some other T-18 children do, but the appointments are so draining. It is running here, there, and everywhere everyday. And she s so sensitive to the sun, it is so hard on her to just get her in and out of the car because it hurts her eyes so bad. But anyways...I just wanted to let you know you are not alone on this. I feel like I am on the verge of a nervous breakdown everyday and feel like I can't go on anymore! But one look at her and her will for life makes me feel so guilty for that. But like you said..God is on our side and he will pull us through no matter what. I love you and am always here for you if you need me!

    Danielle Isenhour!

  7. Susan-- I pray that the Lord gives you grace and places his hand on Rebekah's life. These two songs came to mind: please take a moment to listen to them.