Craniosynostosis, irrational fears, and a confession

Eli’s surgery is scheduled for 11:15am this Friday. I do not want to do this. I do not want to say good bye and hand my precious son to strangers. Again. And no, it is not easier because we’ve done this before. In fact, this time is harder. A lot harder. When Eli had heart surgery he was a sick baby. He didn’t eat. He struggled to breathe. We knew surgery was our only hope of fixing him. We were ready to have a healthy baby. This time, although the surgery is necessary, we do not see the detrimental effects of his craniosynostosis – yet. Besides his misshapen head (which most people don’t even notice until I point it out because it’s in the back), he shows no outward signs of being “sick”. That’s the thing about craniosynostosis. The surgery is a preventative surgery. If left untreated, the brain will stop growing because it will have nowhere to go. Obviously, if that were to happen, it would be devastating for the child developmentally. But handing our outwardly “well” baby over for a majorly invasive surgery is causing extreme anxiety for this mama. Not to mention the fact that his type of craniosynostosis, lambdoid, is extremely rare. The surgeons have done hundreds of CVR (Cranial Vault Reconstruction) operations this year alone. But when I asked how many lambdoid surgeries they’ve done this year, the reply was alarming. Eli will be their fourth. Yep. They’ve done this surgery three other times this year. That puts me at ease. Not really. Ugh. Eli is doing great. He’s hitting milestones and making strides daily. He laughs and plays and has the sweetest little personality. What if something goes catastrophically wrong and that all goes away??? I know I shouldn’t think like that but it’s hard not to. I want to stay positive but I just can’t. I. Am. Terrified.

I have a confession to make. I am afraid God is going to punish me because I once wasn’t sure I wanted Eli. When I was pregnant and we first found out our baby had Down syndrome I thought horrible thoughts. I actually wished I would have a miscarriage. Before you lambaste me and tell me how horrible I am, please understand I was scared. I had no idea what having a baby with Down syndrome would mean for my family. After I found Acceptance I regretted every negative thought I once had. I prayed for forgiveness. I lived fearfully throughout my pregnancy that I would actually miscarry. I begged God not to take my baby. Once Eli successfully made it through open heart surgery I felt relieved. I felt unburdened. And then he was diagnosed with craniosynostosis and we were told he would once again have to undergo surgery. And then the fear came back. All of those negative feelings of regret washed over me like a tidal wave. I was convinced this was all my fault. Since then, I have prayed constantly. The rational side of me does have faith that God loves me and He loves Eli and knows how much I need him. The irrational side of me is still just that, irrational.

I love my children more than anything in this world. I thank God every second of every day for choosing me as their mommy. I am forever grateful that I gained clarity and compassion on that beach back in June 2012. I felt The Lord’s presence that day and I felt it again while Eli underwent heart surgery. I pray for the same peace on Friday.

Our Eli might look different after surgery. His head shape will change. The alignment of his eyes and/or ears may change. He will have a jagged scar from ear to ear over his head. But Eli will still be Eli. He will still have a thousand watt smile and he will continue to steal the hearts of many. He is fearfully and wonderfully made. He is a child of God and he is loved more than any words could begin to describe.

Thank you all so much for your thoughts and prayers. It means so much to Chuck and I that so many people truly care about Eli and our family.

I will update this blog once we are on the “other side”. Surgery is estimated to take 5-6 hours. Eli will be away from us for about 8 hours. I will be counting down the minutes. I will miss this face. 20131003-022536.jpg

21 comments on “Craniosynostosis, irrational fears, and a confession

  1. I, personally, don’t believe in a God who punishes – just one who loves, even we don’t understand his decisions for our life. I think all of those thoughts you had before you welcomed Eli into your life sound very normal to me. Be kind to yourself, especially as you face this next challenge. Eli (and your whole family) will be in our hearts, thoughts and prayers throughout his surgery and as he recovers. Much love xx

  2. Melanie, I love you, and I am so proud of you. I say ditto to Mummalove’s comments and would add, that I believe you must be highly esteemed in God’s eye to be given the privilege of raising and caring for such a child as Eli. You are Eli’s mom because you are worthy of the task. You have loved and cared for others over and above the call, ever since you were young. You have the capacity to give that kind of love, and that is rare, even more rare than Lambdoid Craniosynostosis. So what a perfect match, you and Eli.

    I agonize for you and the fear and pain you are experiencing. In spite of all these good thoughts it can be so real and so raw. I am so thankful that you have Chuck, your mom and so many others in your life who know the rational truth, and can comfort you in your fears. Your open honesty and confessions will draw others closer to you, and you will draw much strength from them. My sole prayer for you today and for the duration of Eli’s recovery is for peace and calm to come over you and Chuck and Cody. I pray for Doreen also, that God will give her the strength and peace of mind for her task as your mom and Cody’s grandma.

    Love Natalie

  3. Mel…we were so blessed to have you and your family join us in worship last Sunday at VCA, blessed to see God’s mercy and love bestowed on your family. We will be praying for His guiding hand on the medical team; for God to give you and Chuck strength and peace, and of course, for mercy on Eli. We continually find our faith strengthened when we see our prayers answered by our God. Thank you for your witness!

    • Thank you for your prayers and for introducing us to and welcoming us into the VCA family, Michael. Your congregation is very special. I appreciate all of the continued love and prayers for our family!

  4. Melanie, God is pure love and I know, you know, in your rational heart that this is so. God is not vindictive or vengeful, none of us could ever hope to stand before Him, if He was. God has trusted you and Chuck with these two little souls. No mom knows how long she will have to love her child, what God’s will is for them, or when He will call them home. Enjoy each day with them, it is a blessing. Trust in His love for you and your family. Feel the warmth of prayers so many say for you and Eli. Feel His peace once more. Let God carry you through tomorrow. I believe Eli’s light will shine on in this world for years to come. Love & hugs, Jouella

  5. Mel you are a warrior for sharing your confessions – regardless of circumstance Many would never be so brave. Eli also has this strength – apple doesn’t fall far from the tree.. Allow yourself to be human.. God is a loving and forgiving God – remember he hand selected Eli for you.. I love you, and I cannot imagine what feelings you will have handing Eli over yet again. Pray for peace, and comfort for Eli and all of you – God never fails..

  6. Prayers for your little man that God will hold the hand of the surgeon and perform this procedure exactly as it is supposed to be.

    Don’t beat yourself up for your doubts regarding his diagnosis. My granddaughter, also DS, was loved from the moment she was born (though we had no prenatal diagnosis). BUT, she was born with a hole in her heart that required surgery. They hoped it might grow together, but that did not happen.

    At six months old, when my daughter handed that little girl to the nurses to have her chest opened, I quietly asked my mother “Should we pray that she survive or that God will take her?” Her response, “Pray for His will to be done”. Today, after just celebrating her 8th birthday yesterday, I cannot believe that was every prayer.

    When you’re motivated by fear, uncertainty and ignorance of a situation, there’s no way to comprehend the joys ahead.

    Prayers, for that beautiful child and his anxious mom. God be with you!

  7. I will be praying for little Eli !! you will see everything will be fine!! God is with you and Eli!! Stop punishing yourself for what is past now, as all the feelings and fears have changed! God knows how a great mom you are and that makes you a great great person!! pls keep us updated with Elis recovery!!!!!!!! 🙂

  8. Oh Mel!! You make my heart ache so much. I am so happy for you, for everything that you have and that you have found, and I am so scared too. A lot of people wrote really wise comments here, and I think they are right. I do understand your fear though, I would be scared too. I don’t know what to say, but I will pray for Eli and your family… and I will be SO anxious to know when it is finished.

  9. First, I will pray for the surgeons as they perform the surgery. I will pray for Eli and that he will have a great recovery. I will pray for peace and comfort for you and your family as you wait through the surgery. Sending many thoughts and prayers your way.

    Second, I also don’t believe for one second that God is going to punish you because I don’t believe he is that type of God nor did you do anything wrong. This blog demonstrates what a loving and awesome mom you are. I find the verses below comforting; however, I don’t think it’s possible to tell a mom not to be anxious before her son has surgery. 🙂 But the following phrase can be of comfort, at least for me it has been, “let your requests be known to God. And the peace of God will guard your heart and mind in Christ Jesus.”
    “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:6-7

  10. Mel, I know those thoughts and I know those fears. I lived them as well. When I was going through everything that I went through after Ian’s birth and diagnosis and felt so scared and lost, a wise friend told me “God doesn’t wield pain and suffering like a sword.” I loved that. It has stuck with me through many trials and tribulations we’ve faced. And when I think about the fact that I cried on the day that my baby was born, I know one thing… I will spend the rest of my life making it up to him. Be gentle with yourself and know that a lot of us are right there with you. Your baby boy is beautiful and strong, just like his mom. I will be praying so hard tomorrow and wish I could give you all a big hug!

  11. I pray every night for Eli and my sister, Pat is praying for Eli also. Have faith and courage. Eli is so very special to us all. May God Bless and Be With Eli and Your Family.

    With Much Love…………. Uncle Paul & Kat

  12. I can relate completely to how you felt and I often worry if there will be some kind of backlash for thinking such horrible thoughts about a little boy who I would literally die for now.
    God has blessed your amazingly sweet family and Eli WILL be ok. You guys are great parents and you are doing the best for Eli. 🙂 continuing to pray for your family daily. Keep us updated.

    • Thanks Ashley! It’s nice to know I’m not alone. I truly believe God knows what is in our hearts. I am happy to report, I have let go of the fear!

      I think of you and your sweet, growing family often. Hope you’re doing well!

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