Thursday, October 05, 2006

A Vulnerable Look Through The Window Of My Heart...

It was about 9:00pm last evening when my body made an unconscious decision to get up from my perched position in Little Bug’s room, walk two steps to his bed and climb up on the platform they have provided to rise me just high enough above his machines and tubes as to not disturb him. Once there, I smothered him with silent kisses and whispered “I love you’s” in his ears before exiting his room for the evening. With a certain numbness and hollow feeling, I walked 53 steps to the elevator, pushed #5 and waited to exit. I turned the corner into the sleeping area and with robotic motion entered the 5 digit code to open the door to my sleeping closet. When I arrived, it was quiet and cold and empty, nothing a sleeping room should be. I have always been fond of falling asleep in a warm & cozy room with signs of life everywhere. Where are the signs of life in this 8 x 8 room? I know the obvious answer is ME! I am living and breathing, but why do I feel so void of life? Maybe because life, as I had planned it and hoped it would be is not within my reach.

I fumbled around in my bag to find one of Connor’s sleepers, and I curled up in my single bed grasping onto the smells of my precious baby boy. I had myself a good ‘ol cry and then found myself restless with the thoughts and truths that you are about to read. I often find myself in the darkness with thoughts that I just cannot ignore, but tonight the thoughts are rushing in with a vengeance. The words are swirling around in my mind like a million $10 bills in a wind tunnel, out of control and going no where. Suddenly, the words form sentences and the sentences form paragraphs and before I knew it this post was created. For months now I have used this blog to chronicle Connor’s progress, but I have also used it for an outlet for my feelings and honesty. This is yet another view into the vulnerabilities of my heart.

I have always been the “go to girl”. You know, the one who swoops in when the chips are down and brings a word of encouragement or lends a hand of support when others are in need. Anyone who knows me well, knows that this is true. It is second nature. It is who I was born to be. It isn’t hard. It takes no effort. It really doesn’t even take a second thought. To be quite honest, it has brought me some of the greatest joys of my life. I find contentment in being able to walk alongside a soul that is hurting or confused and I love to watch as transformations begin to take place. It is wonderful to know that God has given me a beautiful gift of stepping into the lives of others and helping to provide what they need at the very time they need it.

As of late, I find myself in a very different role. I don’t swoop in for others because I am in need myself. I haven’t given in the ways that I love to give for almost a year now and I feel displaced. I feel empty from being in need, but I also feel empty for not helping someone else in need. What a quandary!! I have realized that this wasteland that I am in is unfamiliar, unsettling, unproductive and unwanted. I never asked to be here. I never wanted to be here. But here I am, in need. I don’t quickly answer my family and sweet friends with a “Yes, come on down, we’d love to see you!” because I wonder if it will just be a depressing visit filled with more questions and more uncertainty that will frustrate everyone. This isn’t me. This isn’t the woman I am on the inside. I have come to the conclusion that I don’t “do” needy well. I am not accustomed to asking for help or support or even love. How do I make the switch? How do I transition from being strong to asking for others to help hold me up?

Many of you may wonder why it is that when you have asked to help us out why we don’t have too much to say. I know for myself that I am confused with the facts of being needy and needing support. It is the hardest thing for me to admit that I cannot do this on my own or that Randy and I cannot band together with our faith in God and let that be enough….It is not enough!!! We are definitely at a place where we need others, but it is so hard to receive. And it is even harder to ask for it!! It is humbling and it is overwhelming.

Is it pride that creeps in and makes me wonder if the blogs that I post will simply make people feel sorry for us or if they will really understand our suffering? When we comment about Little Bug’s progress, or lack there of, and ask for prayers, do you realize how that makes us feel as parents? We feel inadequate to face the struggles that Connor endures and we wonder how long we will have to continually ask for the army to rise up around us. When do we get to go back to being in the army? Could it be pride, once again, that kicks in when one more person wants to come and meet our precious son and I realize I don’t have the commodity of putting a cute little outfit on him to make him look as cute as possible for this new introduction? We have to introduce our son with a tube down his throat, naked as he came into this world, with every scar exposed for all to see. There is no “prettying” him up for our beloved visitors. Is it also pride which makes it so hard to admit how far behind we are in this world of development that Connor has yet to discover? How we wish we could talk about the wonderful milestones that we are reaching as a family and how we are watching Little Bug explore the world with wonder, but this is not a conversation that is ours to have at the moment. We do know it will come, but when? When will it come?

Oh Lord, break me of this pride if this is what it is. Repair what is broken inside of me that doesn’t allow me to receive with grace what so many want to provide for me, for us, for our little family. This is not an easy journey, Lord. It seems to be lasting much longer than we ever planned and it seems to be robbing us of so much. I feel like it should be easier for me to just make a decision to “choose joy”, but I find it most difficult to choose anything because our road seems to be so predetermined and so many choices have been taken away from us. Give me clarity dear Lord to trust you to redirect our path and bring our joy back into view. Would you quietly enter this displaced heart and fill it with your sweet spirit of conformity and love. Is it possible that you could replace this wandering and wondering heart with a sense of your shepherding and your guiding hand? I know that you know the way through the wilderness and I know that you will lead us to the promised land. I know it in my heart, by my faith that I have in your word, but my mind is beginning to doubt your plan. Take my doubt and wipe it clean. Take my questions and provide your clam and your peace for the answers that I must hear. You are a GOOD God and I do trust you. Walk with me in this lonely desert place. Breathe new life into my soul and allow your word to be proclaimed once again within my heart. Amen.

These thoughts, whether random or contrived or confused, are the still echoes of my soul. By very nature of their loud knocking on my minds door last night, they were words that were begging to find a place outside of me to be examined and to be laid for all to see.

Lovebug Hugs,
Lori

PS ~ Connor’s condition remains the same today. He is heavily sedated and sleeping fairly well. They stopped his antibiotics today as the surgeon feels that he isn’t at risk for infections from the actual surgery any longer. He is still fairly puffy and they are tweaking his medicines to see if they can get more fluid off of him. Other than that, the plan remains the same to keep the breathing tube in until Sunday.

27 comments:

Wyndi said...

you still help people lori, even if your not tring. it is who you are. all of us heart moms know that your smile and truths you share have helped us, and still help us with tough times. connor is handsome and dosen't need to be prettied up:) his scares show everybody what a strong little guy he is. It is hard to ask for help, i did not feel like i needed anything but her. nothing else seemed to matter but how izabell was doing, and my day and mood was a reflection of her progresses. youu have been throught and are going through so much, so many hard moments, you are doing amazing, beyond amazing. i am amazed and so proud of you!

Sky said...

Lori Its ok to feel like you do, you have a very heavy load right now, you are loved and supported by hundreds if not thousands or more, each and every day. It is ok to ask for help and it is ok to say no thank you, we are all brothers and sisters who share the same father and thru him we are there for each other, be it be with a smile or a hug or a conversation of support. Things will get better and your life will return to normal and you will once again be the one raising people up. But right now let us lift you and Randy and Connor up. Its not about cute cloths, or new toys, or a facial every Tuesday, its about the beauty of life, and the miracles that are given each and every day. I Love You Guys So Much!!! Sheila

Anonymous said...

Lori,

I've been reading your blog for a long time. I go to church with your parents and I'm always greeted by your dad! I don't know how to put this into words(you write so beautifully). You may not think you are giving of your self, but believe me you have. You've shown me how to have faith in God and not to give up! For the last six years my daughter (who is my best friend) decided to distance herself from her family. We still don't understand why, but I try to hold on! The prayer you just said has lifted me up...because I too have been doubting Gods plan and oh how I know that lonely,empty feeling. I miss her so much and never expected this to happen in my life. I just wanted you to know how much you've taught me how to pray and to keep up the faith!

Anonymous said...

(((((((LORI))))))
(A little blog hug for you.)

You are doing the best you can in dealing with Connors health. Noone is expecting more of you in the role that has been handed to you.
Dont turn down anyone that offers to help hold you up,take a shift with Connor so you can get away for a bit, or they can do those little things around your house that need to be done.

Anything we can do,you know how to get us a message.

Many hugs and prayers sent to you.
Cheryl and Jon

Anonymous said...

Lori,

I am a friend of the Emery's up here in Everett. I have read your accounts with incredible awe. You have uplifted me through your beautiful writing and profound Godly wisdom. I have wanted to write to you and tell you that you ministered to me and my family when you shared that song by Don Moen. The day that you shared it was a day after my niece and her husband delivered their precious first child, a son, at 29 weeks. He lived 5 hours and then went to be with the Lord. I went out and bought that CD for her. It said everything. So, you see my dear, you are the "go to girl". I am sorry that I didn't write sooner to let you know that. You are writing your heart in obedience to the Lord and he is using you, perhaps silently at times, but using you in this new situation.

I am sorry for all that you are going through and the road that you will still be traveling for a season. As you know, God will use this (as he already has) in your days ahead.

Rest now while you can. You two "little bugs" will be keeping you plenty busy, busy, busy very soon.

Blessings to you,
Jen Otto

Anonymous said...

Lori, Remember all the times when you perceived that someone was in need, you were a "Go For It" warrior. You ministered to them, (they had to learn to receive) they were greatly helped. Now you are in need of help(Yes you are).Learning to Receive is an art to be mastered. Lean on others for your needs. Someday all these trials will be used in your ministries. I like to think of it as going to Gods' University. By the time you graduate you will have a Doctorate! Lori if you need anything ask me, I will feel it a priviledge to help if I can. Much Love Grandma Phyllis

Anonymous said...

Lori,
I've been following this blog ever since you started writing it. I've cried many a time reading what you've written, feeling your pain at times although I know I probably can't feel it the way other people do because I have never had children. I so appreciate your authenticity in all of this. I admire that about you and want to be like you. I admire that you do not seem angry and bitter at God and that you are honest with him and always turn to him. I think about how it says in the Bible that His strength is made perfect in our weakness. I also think about how all of us who know Him form the body of Christ. Each part needs all the other parts. I can also relate to not wanting to ask for help. I've never wanted to do that and have always wanted to be very independent and self-sufficient. I regret to say that it's hard for me to depend and rely on God just because I want to do everything on my own. It is definitely easier for me to realize my need for Him when things are challenging. Just know that what God is doing for Connor is an inspiration and encouragement to me and a reminder of how good God is. Know that, while you think you cannot be the "go to girl" right now, you have touched many lives including mine.

Anonymous said...

Lori,
You are such a beautiful woman, inside and out. Your words always touch me so deeply. If only I could take some of the pain away. I have walked the same path. I know some of your feelings. Enjoy your precious gift every day, he is a blessing and touches us every day through you and Randy and this blog. If only I had the right words to say. I am here any time you need me, please use me and ask for help. You, Randy and Conner are going through the most difficlut time in your lives and you need as much love and support you can get, once you let go, you will see that it is not always about giving, you need to receive also. You are dear friend and we love you.
Tammee

Anonymous said...

Hi Lori,

You are such a strong women! God knew what He was doing when He made you & Randy Conner's parents. God has used you more then I think you will ever know. You might think that you aren't the go to girl right now, but you writing in this blog almost every day has touched countless lives. You have touched mine incredibily & I don't have children yet! God is using you during this time to touch the lives of others as He is touching yours.
Dear Lord, Please help Lori to understand the importance she has in the lives of others during this time. Give her Your peace that passes all understanding and restore Your joy in her live once again I pray. Amen
I pray for your family often & hope to be able to see you one of these days soon & meet your brave "little bug". Love, Amy Reems(Norwood)

Emery Six said...

Lori, Randy, Littlebug and Minibug,

We're sending our love your way and thinking of you tonight. xoxo

Susan, John and Kids

Anonymous said...

Lori
Thank you for sharing with us...I am so like you and want to take care of everybody ......
I pray that God gives you peace, comfort and wisdom in these next days and weeks...JOY too....
Life can be such a roller coaster ride some days we just do more loops and curves than other......

Blessings
Debi

Anonymous said...

Lori,

You don't know me, but I have been following your blog for a few months now. I also have a 1 year old child with Down Syndrome and some of the other medical issues that can go along with that. I remember feeling that the T21 isn't so bad if we can just get through the medical stuff! You've gone through much more than we ever did and I admire you very much. When my daughter was about 9 months old, my husband needed to talk to a doc about all the feelings he had been storing inside of him. Maybe talking to a doc could help you too. There's no shame in seeking help! When Momma's not happy, nobody's happy. I know that all you want to do is to take care of your baby, but you need to take care of yourself too.

You and your family are in my thoughts and prayers.

Megan

Anonymous said...

Dear, dear Lori, What a blessing you have been, just in your sharing your heart with all of us.
I said right from the start that God knew exactly who Connor was going to need for the best parents he could possibly have. You & Randy have been that and more.
By sharing your thoughts and feelings with us, you have encouraged and lifted us many times. I know it is hard for a go to person like you to ask your help and support from others. It is always easier to be the giver than the receiver. Now it is time to learn to receive from your friend, family and blogger family as well. Your writings have touched the lives of thousands by this time and only eternity will tell how you have uplifted and encouraged others. We continue to hold you in our hearts and prayers (all 4 of you) Jo Ann & Rip

Anonymous said...

Dear Lori,
God hears you and He knows your heart's cry. Let His strong wings envelop you and cradle you when you go to your "prayer", sleeping closet. Let Him soothe your wounds with His healing balm and drift away as He speaks to your heart with His sweet, sweet voice. He loves you and knows the desires of your heart. Blessings and Peace, Randy and Cyndi

Anonymous said...

Oh Lori, thank you for your honesty. I have sensed what you have just poured out for a couple weeks now and felt very heavy hearted over it. The Lord continually brings you to mind and I pray for you often... Yesterday when Randy brought Abbey over I just knew how difficult it was for him to leave you and Connor. I only mentioned it briefly because I could tell he felt discouraged and didn't want to "go there". These times are not easy and as much as those of us on the "outside" want to ease your pain this really is your burden to bear. Hopefully it is lightened by the love of your family and friends and they shoulder some of it for you. But, when the lights turn out at night and you lay there in the presence of the Lord, it is He that ministers to those secret places in your heart. You are a needy little girl in the arms of your Father. It feels lonely though, doesn't it? He loves holding you and loves that you come to Him and He understands your pain. For some reason this has to be, which is beyond any of our human understanding. But, nothing goes unseen by Him, not one tear, not one comment, not one little detail. He is crazy about you, Randy & Connor. God is for us, not against us. Every day, every moment. I am reminded of these truthes as I reflect on the years and remember such difficult times in my own life. Many years of infertility (7+) and five years or so of a very difficult marriage. When I would share with those close to me they would say, "why do you act like everything is ok? You look like you are fine, how can you be in such pain and it now be obvious?" And I would say, "What do you want me to do - walk around crying? Wear my heart on my sleeve?" There is something in us that wants to look ok even when we are falling apart emotionally on the inside. It's still hard for me to let down my guard and let people in. God is still working on this in me. I've had to swallow a lot of pride and simply admit that I can't always have it together. My house isn't always clean, my kids don't always look put together and neither do I for that matter but, my heart seeks God and I want nothing more than to please Him and lead my children to Him. It is obvious that this is also your hearts desire. The Lord is please to call you His child. You have done a beautiful job of reflecting Him. But, it isn't an easy road is it? It reduces me to tears even now as I am aware of the little that I am capable of apart from Him. In fact, apart from Him we can do nothing. It is very humbling to be needy - to need God and others. But, thank the Lord for dear friends and loved ones to be real with. To fall apart and admit our weaknesses. I say these things, not to talk about me when you are in such great need, but to say that I look back on those very difficult years in sweet remembrance of how near the Lord was to me. How He ministered to me during those dark lonely nights. And, you will too. The day will come when you will look back and this will all be a memory and you will know that your sweet Savior, the One who redeemed you -carried you. He has a plan for you and it is good! Do not lose hope!
In His love, Rhonda

Anonymous said...

My Dear Lori,
You don't know me, but I'm a friend of a friend of yours in Ca.Just started following the blog thing yesterday, tho kept up with all that's going on with your precious family thru our mutual friend for several months now.Thurs. 11-5 msg. is one of the most beautiful things I have ever read(and I'm old!!)Read most of the comments too & I don't know who Grandma Phyllis is, but she pretty much says just what I would say if I were your mom.As a nurse,I may understand a bit more about what's going on with Connor than some, and I have to say the modern medical technology God is having used on him is amazing. Tell Randy I like all the medical jargon he was concerned about the other day.Honey,God has not only given you Connor for a reason, He has given you your strength also, & now I pray that He will give you the strength to go out of your comfort zone and totally accept, and even ask for, the blanket of help & love that He has put around you in friends,family,& even strangers like me.Few can even imagine what you're going thru emotionally(& don't forget the raging hormones of pregnancy too) & to read Wed. blog & realize that Randy has to leave again makes my heart cry for you.Every word you put out in Thurs. blog is SO heartfelt and REAL.Many could learn(& I'm sure have)a lot about faith in God from you.He understands our every thought & does not leave us for a moment,even tho it may feel that way at a time like this.Cling to Him, & share those sorts of thoughts with Him anytime.Definitely NOT a sign of any weakness---just truth.I continue to pray for you all 4,along with my family of 3 kids & 6 grandkids,& all the others around the blog. Love & prayers,Lorrie fr. Calif.

Anonymous said...

Lori,
Thankyou for being so transparent and sharring your true heart. It has taken me a little while to respond because I felt like after reading what you wrote, what could a person even say? I can not relate to the situation you are in with a sick child but I can relate to the fact that you have always been the "go to" girl. You are there for everyone else and that is your gift to help others and I think of myself in a very similar way. I have realized about myself lately that it is hard for me to receive help from others or to be real with others when I do not feel all that strong. Being a pastors wife you want to be strong and have to choose wisely who you can truly share your heart with and feel safe in doing so. I have learned through a bible study we are doing called True Faced and through a few other events in my life lately that trust has been one of my root issues. I have also been studying a little about humility and this is what I read the other day. "Humility requires trust. Humility believes that I can trust God to teach, direct, and protect me. Humility also believes that God has provided OTHERS in my life to teach, direct and protect me." When I read this after I had already discovered that trust is a huge weak spot in my life - I realized that pride comes in the way and keeps me from receiving the love and help from others. My heart has been pure in this but I had ALWAYS been the strong one. I am learning to let others in and admitt that I can only take sooo much and how refreshing that has been. Lori, you have done absolutely awesome and not many of us could hold up as you have done. Remember that we are all to be reaching out to one another and that is what the body of christ is suppose to be about. You have taken a huge step in admitting your heart and please know that the Lord is so pleased with you and Randy. This journey is not over as you know but God wants to bless you through others at this hard time so please sit back, trust and receive. I am praying for you.
Love
Tammy

Anonymous said...

Lori,
Your family of four are very loved! I love you all, and lift you up to God's throne room.
Love,
Karin

Anonymous said...

Lori,
We have been lifting you and your family up in prayer for many months and will continue to do so. You and your family are loved! God is good!

Anonymous said...

Many prayers for your family and little bug.

Anonymous said...

Lori,

PLEASE know that your strength and courage have touched countless lives since you first started this blog. I think it's wonderful that you have a sounding board to go to when you get bogged down with all of your worries and frustrations. You NEED to be able to get them off your chest!!! It doesn't make you a bad person-it makes you human!!!

I'm praying for you.

Anonymous said...

Lori,

I have thought for several days as to whether or how to respond to your beautiful, transparent writing in your last blog. But, as my little one is quiet for a moment I have decided to send a thought...Lori, I teach preschool (3-5 years old) for little people with developmental delays...it is my love and passion (and part of the journey that God and I are on)... and I love and respect deeply the parents of the children I work with...frankly, from some of the moms I have worked with I have learned so much about patience, humor, and love...and, Lori, while you may not feel like you are giving much and so needy at this point...it is my belief that you are touching lives. Maybe not in the same way that you have in the pas, but you are...and I know that you are touching that precious little life that God has given you to shepherd and love!

Lori, I don't know you, except through these blogs and I have only once met Connor (I came to visit the day after his heart surgery)...but, I think you are doing an amazing job being a parent, and being a woman after God's own heart.

I believe that the grief you are experiencing is incredible and hard...I really don't know how to respond to that except to say that I believe in God...in His power to love, to provide needed restful, peaceful moments, and comfort...

May you be experiencing the comforting arms, words, hugs, and practical help from those closest to you...

May our God shower you with a sense of his peace and love...

Kristine

Anonymous said...

Lori~

Thank you for your vulnerability in this blog entry. I am sure that it wasn't easy for you to reveal yet another intimate part of your life. But, thank you for being real.

You have always been the one to "choose joy" even when it seems so difficult. You have also been such an encouragement to the thousands of people reading Connor's blog or the families that you have met because of him. I wish that I could write something that would instantly boost your spirit. I cannot. But, we both know the One who has given others the words to write in His book to help all of us in our own situations. I know that you are completely leaning on Him. I am forever grateful that you and Randy are such strong believers in Christ. And, that you have the support of loving Christian family and friends.

It always feels odd to accept help from others, but that it what we want to give to you and your growing family. Let us help when you are ready. Afterall, there have been countless times when you have stood by so many of us. You have been there through several of your friends' childbirth deliveries, marriages and divorces, uncertain medical diagnoses, loss of loved ones, and on and on. Let us continue to stand by you and your family.

Thank you, dear sister-in-heart, for this glimpse into your heart and mind. I will pray more specifically for these feelings that you wrote in this entry.

I love you and admire you so very much. And, I am forever grateful that you brought Connor into this world. He is the most special nephew--EVER!

Good night sweet sister!

Love, Heather

susanke said...

Dear Lori - What an incredible woman you are! I can't begin to imagine the heartache that you've been through over and over again, but I know God knows and understands. Your words are heart wrenching, but give testimony to our God and His faithfulness even when you feel without hope.

It's really okay that you don't feel strong right now. You've taken time to write down the honest feelings of your heart just as David and others did in the "psalms" which were heart cries to the Lord God. "My heart pounds, my strength fails me, even the light has gone from my eyes." Psalm 38:10 When I get overwhelmed, I'm often reminded of a song by Twila Paris - "The Warrier is a Child" http://www.gagirl.com/warrior.html.

I also wanted to share a song that we're learning at church right now by Matt Redman - "You Never Let Go"

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I caught in the middle of the storms of this life
I won't turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Chorus:
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You
Still I will praise You

So just remember when you feel like you can't hang on, the Lord will never let go. We're all here standing in the gap for you.

Blessings, Susan

Anonymous said...

Lori- I just imagine you soaking in the love coming through the comments of this blog. I hope it overwhelms you (and Randy) to know that so many care so deeply. What a blessing to receive from the body of Christ. Keep on keeping on. You're doing a great job! Rhonda

Anonymous said...

Lori,

This web site has over 46,000 hits as of today. Many of those hits are return people who are following Connor's story and are poeple who have known you and/or Randy for years. We are all eager to hold Connor and your family up in prayer. I also beleive that many of those hits are people who do not know your family personally but are being witnessed to as they follow along each day and read some of the comments left. God works miracles we never know about with our lives and I believe God is working some of His miricales in the lives of strangers as they read this blog. The transparent story you are writing about in this blog on the struggles and joys of having a desperately ill child are breath taking. There is so much more God is doing here than we can understand. Keep on writing and being strong in the Lord. He will make a way where there seems to be no way.

Richele & Nick

Sky said...

Ok its Sunday did they remove the vent???? And if so how is little bug doing???? Thinking of you always and praying for you all even more Big Bug Hugs Sheila and Sky