I mentioned in the last post that the boys had moved in to a new NICU. This means different nurses, and aside from the same neurologist we will be dealing going forward, a new medical team.
I got the sense that the Sunday nurse didn’t have a full picture of the boys. She seemed confused that N had ever finished an entire bottle, not realizing the impact of the seizure medication. I sometimes forget that this medication has had him knocked out for over half of his life. So if you didn’t seem him “before”…this seems like his norm.
The nurses each take 20 minutes or so to relay information when they change shifts. Key events, routines, special needs, etc. There’s generally not time for a complete running history, or a background story. And somewhere after the weeks of telephone, the result was this new set of nurses didn’t know our boys as well as I would like.
After J and K left on Sunday, I ended up spending most of the afternoon and evening talking with our nurse. About what has happened since they were born, pre medication, during medication, and what we are working toward now. But we also talked about the pregnancy, the initial findings, the big Dandy Walker scare, hearing about termination, the second medical team, a little hope, Lissencephaly, lot of fear, and finally, a long waiting game. I happily relayed that while we were holding our breath, the boys arrived breathing on their own. And how now that we are dealing with seizures, as well as low tone, feeding delays, suspected future vision issues, and according to the text book…a ticking clock…we still feel these boys are perfect little blessings.
It has become such a familiar story, yet I sometimes don’t recognize my own voice when I tell it. That can’t possibly be me…sounding strong and unwavering. Not scared, but proud? It’s not the same voice that called home in tears multiple times. Not the same voice that broke down in the doctors offices. Not the same voice that sobbed a prayer in the outpatient parking garage.
The story hasn’t changed.
So why have I?
I keep thinking of praise song version of “It Is Well”. Make no mistake…this is not exactly “well” with my soul. I did not choose this for my boys, and I still hope they are able to overcome. Sometimes I am angry. Sometimes I am sad. Sometimes I am both. But even then…I am ok.
I am held. Even in this storm.
“Don’t worry about anything; instead, pray about everything. Tell God what you need and thank Him for all that He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:6-7
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
kristina nichols said:
So. Very. Powerful. It is obvious you are filled with the true joy that only shines through unhappy times when it comes from knowing our Savior is in control. This was part of the message at our church yesterday, as was the story behind the lyrics of “It Is Well,” which was quite moving! May God continue to give you more and more strength with each new challenge you face. Your boys, all of them, are blessed to have such a strong Christian witness in their lives.
tina Woods said:
Your faith is such an inspiration that I pray that I have the size of a mustard seed of faith that you have and show. You are an inspiration to all and I am Blessed that God has put you and your family in my life.
Jeannie Wood said:
You give me inspiration! Stay firm Mom for our God is in control. He is already working miracles in your boys’ lives. Praise and glory to God!
Carolyn Cress said:
God Bless you and the boys and all your family!
Jan Tyner said:
Still praying for you and your family.
As I read your blog today in tears (as I often do), the tears are a release of the pure strength, joy, human vulnerability, and inspiration I gain from you. Those precious boys are so lucky to have you as their mother
Juleen Walters/Cascades Women's Health said:
As I was coming into work today, God allowed me to hear a song over the radio and I immediately thought of you. I’m sure you have heard it before, but todays words had new meaning to me. It is called ‘Even if the healing doesn’t come’ by Kutlass http://www.youtube.com/watch?v=SiYAUNJPrMU
I’ve so enjoyed your words of faith and the story of your beautiful boys and the challenges you all face. We will continue to keep you all in our prayers.
Sheila Blevins said:
Thank you for those words. I doubt you realize what an inspiration you are to others (myself included) as you travel this journey. We all have challenges of different kinds at different times in our lives – but it all boils down to this – make sure you are traveling with Jesus. It won’t always be easy – but it will be “well” – even if we don’t feel “well” every moment.
I pray continued blessings for you and your beautiful family. Love and prayers.
Melody and family, you are being prayed for by so many daily. I am glad you update us so we can pray specifically. God can take all our questions and He will give answers!
Missy Ingram said:
Hey melody. Just had u all on my mind and wanted to give u a big hug! I want to be more like you…I really do! Your messages on here are not just words to me. I want to cry for you yet I am so proud of you and how strong you have been and continue to be for your family. I am here if u need me! Prayers always, love ya
Devon and Bryan James said:
You are a very strong Mom!! We are very proud of you and Justin. You and Justin are excellent parents and know what is best for L and N!! We love you boy very much!!!
Gary Cooke said:
I love and pray for your family daily!
Sent from my iPhone
Every time I read your blog I end up in tears to hear your strength and faith that you have. Like Sheila said we all have our challenges in life, but the way I look at it, sometimes when I think I have it rough, I usually end up seeing someone who has it much worse than me and I realize how thankful I should be. Not that I’m not thankful for all God has done for us and our boys, but it sure has been hard sometimes. But as my faith has grown so much over the years, I know that with your love and faith surrounding those precious boys they will always know they are loved by you all and by God. Love and prayers always.
Beverlee Dowdy said:
(((hugs))) and prayers everyday…..
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