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Gains and Losses

Recently, I met an amazing lady named Michelle, whose blog I follow because she and Christian were born with the same type of cleft. Because this cleft is so rare, I treasure our relationship as one in a million...or I guess you could say 50 in 7 billion. :)  She is definitely a special person just like my Christian! She has been through more in her life than most of us will ever face. She recently posted a blog entry called "Gains and Losses" where she listed all the major losses in her life, and what she had gained by them.

I absolutely fell in love with this idea. I think it is Godly, it is positively focused, and it is productive to healing and moving forward in one's life. When we suffer traumatic losses in our lives, we have two paths we can take. Changing our circumstances is usually not an option, but what we can do is let it make us stronger or let it defeat us. What Michelle has done by purposefully noting what she has gained from her losses is open a door to becoming stronger through those losses. So being that I have been through a lot in the last couple of years, and am still healing and finding my way, I was inspired to write my own Gains and Losses blog entry.

My loss: I want to start with the beginning and progress chronologically, so first, I want to address the loss of having a normal pregnancy. I didn't get to experience the excitement and joy of expecting a new baby, at least not in the normal sense. I had weekly and bi-weekly doctors appointments from 18 weeks on. I had my head filled with cautionary warnings that my "child may not live outside the womb" or "he will probably be mentally impaired." I could go on and on, but I think you get the idea. When I think back on my pregnancy as a whole, I can definitely say I did enjoy it. I loved being pregnant, and feeling Christian wiggle around. I loved my maternity pictures, and getting Christian's room ready for him, buying his little clothes and diapers. But I still mourn the loss of not having a normal pregnancy.
My gain: I treasure every single little thing about Christian so much more so than I think many other women do with their children. PLEASE don't take this as a judgement on anyone! It is not AT ALL!!! I hear many, many people say that they need a break from their kids, or their kids are driving them crazy, and so on. But I can honestly tell you that I have never wanted a "break" from Christian. Maybe that day will come eventually (haha!) but as of yet, I enjoy spending every second of every day that I get with him. When Christian was about 8 months old, a lady I knew who had a 1 year old was also pregnant and almost due. We were talking and she kept on and on about how she didn't know how she would handle having two in diapers, how it was going to be so hard, how she was dreading when the baby came. Today, this is just normal rhetoric, this is just how people talk. I don't think anyone REALLY means it, but none the less, I think there is a touch of honesty in it. I almost got upset at the fact that this lady was complaining about having two beautiful, healthy children, something I would die for. So my gain is the sense of preciousness that I have about Christian, the real knowledge of just how much of a gift he really is.

My loss: The emotional scars that still haunt me from our NICU experience. Our NICU experience was awful to say the least. I know I've touched on it before, but I'll say this: the Children's Hospital NICU treated me and Christian like pieces of crap who weren't worthy to be there. With the exception of a few amazing individuals who really cared, people were rude, hateful, disrespectful, and so unsympathetic to the fact that I was hurting that they literally left me with an emotional scar.
My gain: I have a passion to pursue better patient treatment for families with disabled members. When I complete my juris doctorate, I plan on helping families that will be where I was and be a liaison for them. It is not just something I want to do, it is a passion. This has opened doors to other areas where I will be able to help people with my degree, in social security benefits, special education laws, mental health laws, and the list goes on and on. This dream is what keeps me in law school from week to week.

My loss: Missing out on all the things Christian won't be able to do because of his vision impairment.
When we first found out that Christian was blind, I can remember closing my eyes and literally thinking to myself "This is all a dream. I'm going to wake up any second." I have had to come to terms with the fact that Christian may never see my face, that he may never know what the color blue looks like. I have had to find peace with the knowledge that Christian might have to depend on someone for the rest of his life to help him accomplish things.
My gain: I have had the unique opportunity of watching Christian astound me, and others, with all the things that he can do, and that he does well. And I have learned to change my way of thinking, to take my focus off of what Christian can't do, to what he can do. His vision impairment doesn't make him as "pitiful" as I once thought it would. He is so secure and well adjusted in who he is and how he does things that I shocks me. I also would like to add here that I gained a new faith in God, a powerful, moving, life changing faith. I will never give up hope that one day Christian will see. I don't know when or how, but my faith in God will not allow me to let go of that hope. Faith is the substance of things hoped for, the evidence of things not seen. If God never does make it happen, I accept that without any bitterness, but if my faith in that hope is what makes it happen one day, then I will keep believing until the day I die.

My loss: Watching Christian struggle with so many things that other babies do without much help. Christian is 12 months old and he still doesn't crawl. He is getting close, but he's not there yet. I am guessing that he won't walk until somewhere around the age of two, and therapists have told me to expect it as late as three. It breaks my heart to have to see him struggle. Christian didn't smile for the first time until he was two months old. I wanted so bad for Christian to smile at me, to let me know he was happy, and it broke my heart that he couldn't see someone smile to learn how to do it.
My gain: Every single little milestone that Christian reaches is cause for celebration. Just today, Christian clapped for the first time, and I shouted because of the joy that consumed me. The first time he smiled, the first time he said "mama," the first time he sat alone, or fed himself, those meant so much simply because Christian did have to struggle to do those things, yet he perservered. A second gain with this is that I get to see just how strong Christian really is. He not only amazes me when I see just what he faces and conquers, but he convinces me that he WILL be ok.

My loss: The pain of watching Christian go through surgeries. This is BY FAR the most painful thing I've experienced. I tell people that the only way I can describe the pain is that you can feel yourself breathing, but you are not sure how you're still alive. I hurt so bad that I literally thought I would fall over dead sometimes.
My gains: I treasure every day, every moment I have with Christian. It's harder for me to lose my temper with him because I realize that I'd rather have him here and misbehaving then for him to not be here at all. I have watched Christian waking up from surgery, both eyes blacked, bleeding from both eyes, his nose, and his mouth, gasping for breath, moaning in pain, and swollen to three times his normal size. Somehow, the fact that I never get to sleep in anymore, or that Christian can be super fussy when he doesn't feel good, just don't seem to matter all that much.

My loss: My relationship with Chris has suffered tremendously since Christian's birth. I won't go into gorey details, but I will say that with the national divorce rate at 50 to 60%, the divorce rate for parents with special needs children is 70 - 80%. The extra pressure and added stress wear hard on a marriage. We are not the same people we use to be, and our relationship is definitely different.
My gain: I have become more independent. I depend on myself for much more now. and I know now just how strong I am because I've had to withstand so much without that support system of a spouse standing beside me. I am confident that I am going to be ok.

As a reflection on all of this, I have to say, that I think everything happens for a reason. I know that God knew all of this would happen long before it ever did, and I believe that He has plans to prosper me and Christian and to give us hope and a future. I know that although I've suffered a lot of loss in the past few years, I have gained so much more; things that most people will never suffer, but also that most people will never gain. Of course, if I could do something to make Christian better, to wholly heal him, I would do it in a heartbeat, but if I had to do everything over again, I would do it. I choose not to be defeated.


  1. Lacey your strength is amazing and it along with your faith and trust in God will get you through. God is using you and Christian in mighty ways. Just remember when life seems so hard just step out into the sunshine, close your eyes and lift your face to Heaven and when you feel the warmth on your face just know that its God reaching down and holding your beautiful face in his hands and catching every tear you cry. Hang in there girl. God is amazing and he will do great things for you.

  2. lacey you are amazing and ur lil boy is beautiful my daughter is also a miracle.born with complete avsd had open heart surgery at 5 Weeks old and again for a pacemaker at 18 month she's 3 now are u on Facebook hun xx

  3. I just saw your video and you ROCK! And little Christian well he ROCKS too! You both have an AMAZING testimony and what a beautiful gift that is! You are both beautiful stunning lights in a dark world! I think your son is adorable and such a cutie pie! I can honestly say that when I saw his picture and him on the video I saw nothing but cuteness! I just wanted to reach through the screen and give him a big hug and kiss and give you a big hug too! Thank you for shattering down walls of ignorance and pride by shareing your amazing story! Jesus gave the world hope and Christian gives all those who see him and know his story hope also! You are an AMAZING Mommy! Lots of love to you and little adorable Christian :)

  4. Keep praying for your husband. Satan loves to break up families. Fight for your marriage, because Christian needs you both. Be as loving as you can be and leave the rest to God. My family will be praying for yours tonight.

    1. I agree with this comment. Don't let Satan try to break up your family, will be praying for you all. It is only by God's grace that marriages under trial are still together. My husband and I have lost two children (stillborn and a beautiful 4 month old girl), and I know Satan would like to see us fall apart. God' Word gives us strength to persevere in our marriage through tough times. We are praying for you!

  5. do you know how I needed to hear your message today? I am due to give birth to my 8th child the third week of June and we have similair situations. My son has "frontonasal dysplasia" If you look up the condition it shows up on freak show pages, that hurts. His face is worse than anything we have seen on the internet yet. His skull never fully came together and from the top of his nose all the way down it is open. His nose is split on either side of this gaping hole and because there is no roof of the mouth or upper mouth his brain falls down and forward in front of his face. He is missing his corpus callosum and has hypertelorism (wide spaced eyes)with very likely blindness. I can relate to everything you write about except I am still looking ahead to what I know will be a difficult time. I appreciate your posting of your son, I think it will give me courage to show my son to others. I have a caringbridge site that I update as things happen:

    Thank you for your honesty and openness, it blessed me in a very deep way today. I think Christian is beyond beautiful, I think he is PERFECT!



    1. Wow! Mary god bless you and your family! I will be praying for your son!!! :)

  6. Today is the first time I've seen your story and I have to say that I am beyond impressed with you and your son!! God strengthens and grows us through brokenness and you are a testimony of that :-) You are shining a light for so many other people who without you would never see hope.
    I will continue to pray for you and your husband. Don't give up...keep praying. I know it is hard but it is worth it. That little boy needs you both. Even though this situation has changed you both, it appears you had a great love story. Remember how you felt back then. Remember that your marriage is a tool and a test to deepen and demonstrate your love and reverance for the Lord!! I will keep your family in my prayers!

  7. Dear Lacey... God bless you and your family. Hang in there during tough times. May our Lord provides you with enough light for the step you're on. Stay strong!

    Prayers from Singapore.

    Meishan and family

  8. Your story and your son are both so inspiring and uplifting. I thank you so much for sharing them.

    I also hope that your marriage grows stronger. You are the only two people who know exactly how the other feels ... you are the parents of this wonderful little boy. You and your family are in my prayers.

    God bless.

  9. Hi Lacey,

    This is the first time I have visited your blog. I have a special needs child who stayed in the NICU at Vanderbilt too, and I am so sorry your experience there was so horrible. It wasn't like that for us; we felt so cared for and supported during the week we spent there with her. Zoe has Moebius syndrome (facial paralysis, weakened muscles, droopy eyelids, lack of eye movement, no blinking), and she has had a lot of similar developmental problems as Christian, smiling, crawling, walking (she's two, and is finally crawling and trying to cruise around holding onto furniture, no talking yet). We haven't been on quite the journey that you guys have, but I understand many of your losses. I will pray for your marriage; I don't know what I would do without the support and partnership of my husband, and I pray that God will work in your marriage to make it stronger than ever before.


  10. Dear Lacey,
    Praise the Lord for your Faith! God has given you so many gifts, and has inspired you to share the beauty of life and love with the world! Praise God!
    Your video is very powerful and is touching millions. Thank you for choosing LIFE.
    I just read this blog post and wanted to tell you that I'm praying for you and your husband. Through my own parents' separation, I've learned that sometimes space is needed to sort through struggles we endure in life, but we are never fully independent. We must depend others and especially God. I'm praying that if you do get separated, it doesn't end in divorce. Talk with a spiritual advisor. Pray. God has an awesome plan for your life and He loves YOU very much. You and your family are in my prayers...and I will offer my Mass tomorrow for you.
    In Christ our life,

  11. Hi Lacey,

    I am just learning about you, Chris and Christian, but am awestruck and inspired by your family! Christian has a beautiful smile and looks like a very happy baby. I'm so sorry that your marriage has been hit by a thunderbolt. I suspect Chris is going through his own list of losses and maybe hasn't found the gains yet. And he may be feeling less supported or unable to reach out. In any case, I will be praying for the three of you and spreading your good news wherever I can. And I'll keep watching here and on Facebook for Christian's first steps, and all his other "firsts". God bless the three of you!


  12. I, too, wanted to tell you that I am praying for your marriage. Our second daughter Ayumi died about 6 hours after she was born of a subarachnoid ventricular hemorrhage. That loss combined with a series of business reversals about did our marriage in, but by God's grace we were able to turn things around. Eventually we went through counseling, I learned to ask for help from friends, my husband learned to open up to his own friends, and things got better. That was 19 years ago, and now we are very happy and have a real partnership. It took work to get to this point and continues to require work to keep it. But it is so very worth it. So I will pray for you, for him, for Christian and for your family!

  13. Amazing strength! As I watched your video last night twice, I sobbed uncontrollably because I am one of those mother's who constantly wants a break. And you inspired me to dig deeper for that unconditional love. I do know how blessed I am, I just have finally come to the understanding over the last few months as God is breaking me, that I am selfish. I love to give and help people more than anything, BUT when I am in work mode, I do not want to be bothered. Thank you for bringing things into proper perspective. I am committing to pray for all 3 of you. I know your time is consumed with all the new friends and comments, but PLEASE, do not feel like you have to respond! WE KNOW your priorities are with your family. Next, with people, giving you money, don't be afraid to use it to help restore your marriage through counseling and an expensive date night. You deserve it! Take my contribution and go to dinner! My husband and I have been through a terrible time, but miraculously, through prayer and counsel, we have come back together. Maximized Living is a whollistic chiropractic nutritianal center that I have been taking my son to, to resolve his seizures. What a ministry center of Biblical health. Just a thought. You have Dr. Josh Axe in Nashville who is awesome. We just moved from Nashville to GA. And last, Growing Kids Gods Way is a PHENOMINAL series of Biblical Parenting books written by Gary and Anne Marie Ezzo that has been helping me through my 2 year olds "phases". I know things are different for you, but that is all I humbly have to offer back for the difference you made in my life last night/this morning!

  14. Hello Lacey! :)
    I Hope you are doing well, and I just popped by with some (hopefully) encouraging words. I don't know if you have been given any support/information as to raising a blind child, but I juts wanted to let you know, it will work out. One of my best friends has been blind since her birth, and she can do anything I can do! Did you know that there are tools that allow blind people to use both cellphones and computers? You can install a program on the cellphone, that reads everything on the phone out loud. You can install the same program on a computer, and you can also get an extra "keyboard" that displays everything on the screen in braille writing! My friend is on facebook and allmost all other kind of sites (though not all have the correct html-coding to be displayed properly in braille). This can be used also in school, and my friend has gratuated a normal high school in the same time as me! She is now off to university! As a child she went roller skating and rode a bike. Now she has a tandem bike. She has travelled places, is active in politics, she can swim, has tried kayaking and mountain-climing. When she settles down, she will hopefully get a guide-dog which will give her even MORE freedom than she already HAS! Now, I don't know if your government will provide you with tools like this to make yours and Christian's life easier, or if you would have to pay for it yourself. I just wanted to let you know they excist! And with support and the freedom to try out new things, Christian can do anything! :)

  15. In fact, my blind friend is so happy with her life, and she doesn't want to see. I asked her, and she said if she had the choice, she would remain blind. She doesn't feel at loss for not seeing colors, instead she has a passion for music, and is thankful she can listen to it. In fact, it is common for blind people to develop a love for music, and often they play instruments or sings. My friend sings beautifully, and plays the piano. Sometimes people tell her they feel sorry for her for not being able to enjoy the beautiful surroundings, but she doesn't even care. Why would she? If you have never experienced something, you don't know what you're missing, and have no reason to miss it. So it's fine. I'm not saying all blind people are the same; alot of blind people are bitter and sad for not being able to see. But i think with the right attitude, which is certainly sounds like Christian has, it will be all right. :)

  16. Hi Lacey,
    Like the above commenter, I too would like to offer you some hope. From someone who has been blind since birth and is now a successful blind adult who lives entirely on my own and functions independently. I have a masters degree, have spent time doing mission work in Guatemala, held a variety of jobs and have participated in a variety of other activities throughout my life. I say that not for you to think I'm amazing or the exception to the rule... My story is one that could be told by all of my blind friends. If you wish to hear it, I'd love to share it with you. It is just a small part of the amazing things that God has done in my life. I see my blindness as nothing more than a piece of my testimony. I pray that Christian grows up feeling the same way. Praying for you, Chris and Christian.

    In Christ,

  17. Oh wonderful for you to be able to look at all of the bad things that have happened to you in the past few years, but see the GOOD that came from each one. It has been eye opening reading your blog posts (I think I read every one), even more so than just following your story on FB. I have been inspired and amazed by the kind of mother you are to Christian, but you're not just're an amazingly strong, driven and wonderful woman and have come so far. You can go even farther!!! I wish nothing but the best for you and your family. <3

  18. Your love for Christian is truly inspirational. You are an amazing mother and have an incredible little boy. I'd just encourage you
    too with your relationship with Chris. Understandably with so much time and emotion going into Christian there will be little to
    spare. Friends of mine had a 5 year old son who battled with cancer for 2 years. He pass away a year ago. It also took a huge toll on their marriage but they are now working on restoring it. May the Lord bless and keep you all. Peter.

  19. Great post!!! I'm perusing in order to familiarize myself with you before our interview. These posts are definitely doing that job. And I absolutely love all of the information!


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