Saturday, April 28, 2012

In the Quiet Moments

Warning:  I have been trying to allow myself to open up enough, and be honest enough with my own feelings to write this post.  I have typed and deleted many times, and have started and worked on this document for a couple of weeks.  I hope it does not ‘step on any toes’ so-to-speak.  I just needed an outlet to speak my mind and share some feelings.  Thank you for listening and letting me vent a little.  Most importantly, thank you for the prayers.  Please keep them coming. 

Here we go……

Quiet Moments do not happen around here much any more.  I enjoy the noise…giggles, cries, musical toys, Baby Einstein etc.  The noise reminds me that Emma is here - - -my precious little girl who wasn’t supposed to live is VERY MUCH alive and learning so many new and exciting, yet sometimes frustrating and painful things. 

In the quiet moments when I get a chance to sit down and reflect upon the last (almost) 19 months, I can’t believe what we have been through as a family.  Being a parent of a child with a congenital heart defect, no matter what the defect, is difficult, life altering, and emotional.  However, if I am being honest with myself and those around me, I am jealous.  Yes, I said it, jealous or envious.  Don’t get me wrong, I am so blessed to have Emma and be able to enjoy her and her accomplishments. 

Are you waiting for the but………..

Here it is……

A list of things I have not gotten used to yet….

1.     People telling me that I was chosen to be Emma’s mom because I am strong enough……
a.     First of all, thank you for thinking that I am strong enough, but it is all a choice.  Scott and I choose to fight for Emma, get her what she needs, and love her unconditionally.  It is not easy.  There are days that I throw myself to the floor and scream/cry because I feel alone, stressed, and scared.  God is giving me the strength to get through this valley, and for that I am thankful.

2.     Watching Emma struggle and stress over learning new things and gaining strength both physically and emotionally.
a.     Emma sees a physical therapist, occupational therapist, and speech therapist each twice a week for a total of 6 therapies.  We LOVE our therapists.  They are so patient with Emma and genuinely want what is best for her.  They have really helped me learn how to appropriately work with her in order to help her grow and develop as much as she can, but Emma does not enjoy therapy.  Therapy (most of the time) is stressful for her, and even when she does not have ‘scheduled’ therapy she has to do mommy therapy.  There are days when I struggle between finding the balance between fun time and work time.  She is so far behind that we have a lot of homework to do, but I do not want her to hate any and all activities. 

3.      Seeing other families being “normal” and going through “normal” developmental stages.
a.     This is where the ‘green-eyed’ monster rears it ugly head the most.  There are only so many times you can explain why your 19 month old can’t walk, talk, eat, crawl, etc. before you start getting a little perturbed.  I know people mean well, but it doesn’t make it easier.  Even among the heart community Emma is a rarity.  There are just not that many people who we can relate to as far as length of hospital stay and severity of complications that kept us there.  So while most people I know who have children around Emma’s age are talking about potty training, learning new words, speaking in sentences, being more independent, going on first trips to the park, zoo, lake, movies, restaurants, etc, and dealing with shots, snotty noses, ear infections, and fevers----we are isolating our child, taking her to every other day x-rays and blood draws, trying to work with terrible sensory issues so she doesn’t pull out all of her hair (everything is scary to her including: wagon rides, swinging, new people, weird textures, stroller moving too fast, anything food related, and I could go on and on), and  all of her doctor appointments and therapies.

I crave normal sometimes.  I am fully aware that this is our new NORMAL.  I accept that—embrace it even, but that does not mean that I don’t miss the little things like attending worship as a family, or going to Walmart anytime for something I need at home, going to family events, etc.

  I am working at becoming more at peace with this aspect of our lives, but I am a work in progress so to speak.  Please know that I do care about the wonderful things that your child is learning how to do, but that it does strike a nerve inside of me and reminds me that this terrible life altering birth defect CHD has stolen some of those moments from us (at this current time).

I am a mother of a special needs child!  I am proud of this title, but at the same time struggle.

4.     People telling me they know how I feel….
a.     REALLY???  I even ‘chastise’ my husband for saying this from time to time.    There are VERY few people who truly know how I feel.  I don’t mean to seem negative, and I am sure people are only trying to be helpful, but……it really isn’t.  I love living close to Emma’s  doctors, but it is lonely . . . I spend hours on the phone with insurance companies and doctors offices. . . I answer five million questions from all of the medical personnel….and ultimately I try be Emma’s biggest advocate while trying to live my life as well. 

Thank you for letting me vent a little.  I want you to leave this post remembering that I LOVE my child dearly.  I also want you to take a moment and say a prayer of thanks for the healthy children in your life and offer up a prayer of strength for those you know and even those you don’t know who are fighting for their children every day.

Always remember that GOD IS GOOD!  He is---He really is!  All the Time!  Even in the hard times, the quiet moments, when life seems unfair!

Jeremiah 29:11



  1. Sarah I'm so proud of you for venting. It's healthy. As a mom to a CHD baby I know venting is good. I know each babies journey with CHD is different and beyond difficult so if you ever need to chat please know I'm here. Sending lots of prayers to Emma and your family.

  2. I've been reading your blog for quite sometime, and although I've never commented, I've offered many a prayer for Emma and your family!

    I'm a mom to a 'normal' child, so I can't say that I understand how you feel. BUT, I can only imagine (which I'm sure doesn't even do it justice!) If I imagine myself in your shoes, I would think your feelings are totally, completely justified! I feel guilty about my own struggles as a new mom, which doesn't even come close to your struggles.

    It takes so much courage to be honest with yourself about the negative feelings, and THANKFULLY we serve a God who walks along with us and saves us from them!

    Keep your head up, little momma! And, I'll keep praying ;)

  3. No one can understand what selfless, devoted, and faithful parents you and Scott are, Sarah. It's inexplicable, I think, because your sacrifices go above and beyond the imaginable.

    But despite the lack of understanding, you are right that all of us can pray without ceasing for you, Scott, and Emma.

    Thank you for opening up honestly. The first step in our trying to empathize with another person's life is for that other person to open up and honestly say, "This is how it is for me right now."

    So, everybody, when you pray for Emma and her parents - and we are SO grateful for every person who is a Prayer Warrior, knowing your prayers have helped to keep our Lil Warrior Princess alive - please pray for Sarah and for Scott, and for the other parents of special children, as they stand over cribs, take 24/7 hour shifts trying to care for their ill child, and spend countless hours on their knees pleading for patience, for understanding, and for the sheer energy it takes to provide for their child.

    God bless this daughter-in-law of mine. Without her, Miss Emma would not be here today. Her work with and for Emma is unending, and...

    She and Scott love Baby Emma to the moon and back, and to infinity and beyond, and they ALWAYS will do everything they can for our precious little Emma. And Emma knows that: you should see the love in her eyes for her Mommy and Daddy!

    Thanks to all of you-
    Nana Jana

  4. Sara you are right most of us have no idea what you are going through. I am very proud that you put into words your true feeling. Not many people can do what you did. I am very proud of you. You remind me of a Proverbs 31 women.

    Epilogue: The Wife of Noble Character
    10 [a]A wife of noble character who can find?
    She is worth far more than rubies.
    11 Her husband has full confidence in her
    and lacks nothing of value.
    12 She brings him good, not harm,
    all the days of her life.
    13 She selects wool and flax
    and works with eager hands.
    14 She is like the merchant ships,
    bringing her food from afar.
    15 She gets up while it is still night;
    she provides food for her family
    and portions for her female servants.
    16 She considers a field and buys it;
    out of her earnings she plants a vineyard.
    17 She sets about her work vigorously;
    her arms are strong for her tasks.
    18 She sees that her trading is profitable,
    and her lamp does not go out at night.
    19 In her hand she holds the distaff
    and grasps the spindle with her fingers.
    20 She opens her arms to the poor
    and extends her hands to the needy.
    21 When it snows, she has no fear for her household;
    for all of them are clothed in scarlet.
    22 She makes coverings for her bed;
    she is clothed in fine linen and purple.
    23 Her husband is respected at the city gate,
    where he takes his seat among the elders of the land.
    24 She makes linen garments and sells them,
    and supplies the merchants with sashes.
    25 She is clothed with strength and dignity;
    she can laugh at the days to come.
    26 She speaks with wisdom,
    and faithful instruction is on her tongue.
    27 She watches over the affairs of her household
    and does not eat the bread of idleness.
    28 Her children arise and call her blessed;
    her husband also, and he praises her:
    29 “Many women do noble things,
    but you surpass them all.”
    30 Charm is deceptive, and beauty is fleeting;
    but a woman who fears the Lord is to be praised.
    31 Honor her for all that her hands have done,
    and let her works bring her praise at the city gate.
    We will continue to pray for you and your family.

  5. Thank you for being real! I think Christians need to be "real" more often.

  6. God Bless you all ~ And Sarah you will be in my prayers daily for strength as well as peace ! You are a wonderful Mommy and your little Angel is very lucky she has you to LOVE her !! Tam Whitfield McKinley (FB ID)

  7. I can't even begin to imagine how difficult, yet rewarding, your days are. I think that what you are feeling is very 'normal' and why shouldn't you be honest about it. Your life has taken a turn that has taken you on a journey harder than anything you could ever have imagined. As you said, you are missing some of the things you dreamed of and that hurts. I have prayed for your family ever since I discovered your blog shortly before Emma's birth. I check in periodically to see how you guys are doing. I continue to pray for you and Emma. God is in control, even when you feel that everything is out of control. He will continue to be faithful and He knows your heart. He sees your struggle, He knows exactly what you are feeling and He will continue to give you the strength to endure and thrive as Emma's mom.


  8. I think this all is totally normal & fair for you to think this & need to let it out. And I think it was worded much nicer than what it could have been. I am an occupational therapy assistant & I think all the time about how hard is must be for my kids' parents. You are absolutely right...we have no idea. My heart is heavy just thinking what all you must go through. We know you love her!
    We will continue to pray for you all.

  9. Thanks for sharing, Sarah...I will be praying for the continued grace of God that you displayed in your writing! Praise Him for being Him and for being with us! May Jesus be real in the moments you most need Him to be!

  10. Hi Sarah,
    Our daughters are a few months apart and I join you in your list of things they haven't yet done. I've been reading your journey for awhile now, and while our daughter's stories and very different, mom-to-mom...fighting for our children every day...I just want to reach out and give you a big hug. I pray you are surrounded by people that meet you right where you are and give you grace in the quiet moments. I pray for extra strength as you continue to make the amazing choices you make every day.

  11. Sarah, you have no need to apoligize for your honest feelings. Only the One who sits with you in the quiet moments and the hectic moments of your life understands completely. We can all relate on our own level, but those of us on the outside looking in have never walked where you are walking.

    I have prayed for your family since I first stumbled onto your blog shortly before Emma's birth. She has beaten all odds and God continues to work in your lives. Even though you sometimes don't feel strong, your strength has been a blessing to me. I was blessed to go to a Praise Concert by Dennis Jernigan on Sunday evening. His music is wonderful. If you get a chance, look him up online and listen to some of his music. I think it well bless you and encourage you.

    Prayers continue for you.

    Joy/Chandler, OK

  12. Sarah,
    I too have kept up with Emma's progress since day 1 and you guys (all of you) are continuely on the top of my prayer list. I can't even begin to understand the things you have felt because I haven't walked in your shoes. I do understand the medical issues as I am a nurse, but never have been on the other side. You, Scott and Emma are certainly Heros to a lot of us! Please continue to vent as this will help you grow and understand the things that you are facing. God Bless all of you.

  13. Sarah
    I have read your blogs for many many months but never commented. I appreciate you venting to us. I hope you feel no guilt - that is Satan! He loves to make us feel bad for just being human!
    One of my favorite bible verses right now is "the one who calls you is faithful" out of Thessalonians... He has called you to this walk - and we sure don't know why - but he is faithful. The good part about God is that he can take all your venting and love you through it. Keep the faith, and I will continue to pray for your strength to take care of your princess. May God wrap his loving arms around you when you feel down and encourage you deep in your spirit.
    God Bless!

  14. I could feel your heart in your words Sarah-praying for you, Scott and Emma. May God give you all you need for each day.

  15. Sarah,
    I will not say that I understand what you are going through with CHD but I can say I understand having a "special needs" child. I too had one that required tons of attention, surgeries, doctor's appointments, therapy, etc.. For me, it was fear and helplessness. I was scared I would loose her each time they took her behind those steel doors. I was scared to touch her because I didn't want to hurt her, I felt hopeless because as her mom I couldn't do anything to help her. I had other "normal" children which in turn was worse because I couldn't understand why this happened to this child. She was delayed in everything and people asked all sorts of questions that I was tired of answering. This was the case until she was 13 years old and GOD chose to heal her. Even the doctor's say it was "divine intervention" and cannot explain it. I look back now and see where God was carrying me through. At the time, I felt all alone and cried out, yelled at, and blamed God several times. But GOD IS GOOD ALL THE TIME.
    The Bible says "we fight the good fight of faith" and you are winning that fight. I pray God continues to give you and Scott strength to endure and pray that Emma continues to improve everyday in everyway.

  16. Oh Sarah.
    I want so badly to tell you that this too shall pass. That it will get better. I can't....because it won't. The waves will come and go. There will be times where you realize that you've gone months feeling quite accustomed to "your normal" and that you haven't had these thoughts for awhile. And waves when you feel just like this (and worse). What I can assure you though is that your not alone. You have friends that unfortunately do know exactly how you feel. We are here to help you and support you when the waves come crashing in if you just reach for a hand. None of this is fair - not to you, Scott, and especially not to sweet Emma. But it is your life, and one that God has promised to make glorified in His time. Big, BIG heart hugs to you!


  17. Sarah, We are all so thankful that you "opened up" lest we forget. All we think about is seeing more pictures and watching your sweetie grow. We love hearing good news. We forget how you must feel as you deal with your life 24/7. Don't ever feel like you cannot post these things. We are all praying for your precious gift and you and Scott. We need to know what to pray for. Your post helps us take part in your life through prayer. Yes, God is good. We thank Him for the avenue of prayer. I really do believe your post is a good thing for all of us. We all get so busy with our own lives, we forget others sometimes. What is life all about, anyway. Thank God we have those who will uplift us. I will end this little reply by saying, you have a wonderful family and a precious little girl that we all have grown to love.

  18. Sarah,
    I don't even remember how I found your blog... but it was just a little bit after Emma was born and I remember praying for you guys and coming back daily to see if you had updated. I smiled at every hairbow and marveled at the obvious faith you have in God.
    I love that you used your blog today to vent. I am encouraged by your openness. Your jealousy. Your vulnerability. And I think it is such an awesome testimony to your faith to be able to acknowledge these very real feelings in your world and STILL cling to the truth that God is good.
    I have no idea how you feel. I have no idea how each day you have the energy to love your baby girl as well as you do. But, I admire you. And I pray for you.

    Emma is so lucky to have you for a mom.


  19. Love you proud of the wonderful young woman you are! You and your precious family are in my prayers always, and having you on FB is just a good reminder. I appreciate your honesty. We all have our battles...Jeremiah 29:11 is my favorite verse too. Keep the faith! Wohelo
    Love and prayers from your Camp Fire family!!