What I Most Want You To Know - What I Didn't Know

Our guest blogger today is an incredible woman named Leslie. I have gotten to know Leslie through her blog, Joyful Mother of 6 Children, where she shares the struggles and triumphs of her life. Leslie and her husband Roger have six beautiful children, ranging from 15 years old to 19 months. Their youngest daughter Eliana was born with Down's Syndrome and Leslie's heart's desire is help others to see what a precious blessing Eliana is to her family.

I Didn't Know

People often ask, "Did you know?" The question doesn't need more explanation as I do know what they are asking. The answer is "No, I didn't know".

There were so many things that I didn't know before Eliana was born. I never really thought about all that I was missing either. I was really content right where I was. Well, God had different plans for my life. I'm thankful for the path I've walked, though it was not one that I would have chosen. I would not go back and choose a different path now though, as it would surely be a path without my precious daughter Eliana.

Before she was born, I didn't know, despite many ultrasounds, that she would come into the world with a little something extra. Something that is a part of every cell in her body - an extra chromosome. Isn't it amazing that something so very small can impact so many things?

I didn't know what it was like to look at my precious child for the first time and without anyone saying anything - I knew. I didn't know what it felt like to hear that your child - your brand new baby - had a huge hole right in the center of her heart. (It turned out to be 2 holes.) I didn't know what it felt like to sit in a hospital room without your new baby because the babies in NICU can't come out.

I didn't know that it would feel like being a new parent all over again when there were so many new things to learn. All of the confidence that comes with experience just vanished in the face of so many unknowns and fears.

I didn't know much about the heart works - or anything about the many ways that it can not be working the way that it should.

I didn't know what it would feel like to be isolated in my home - afraid to come into contact with any type of germ that would harm my medically fragile baby - how much I would miss our field trips and even just visiting a friend's home. Eliana and I stayed home, with the exception of medical appointments, for many months.

I didn't know the chills and fear that would go through my body when our cardiologist told us that Eliana was in heart failure. Those are words that just don't seem right for a newborn.

I didn't know the incredible love and support that was waiting for me and my family from family, friends and even strangers - many that would become friends. The power of an encouraging word has been a sweet gift to me.

I didn't truly understand the many ways that God is good. That despite my circumstances and despite the times that my prayers were not answered in a way that I wanted, God still remained good. I had to come to a place before Eliana's heart surgery where I was willing to say that I trusted and believed that God was good - even if the outcome of the surgery was not. Oh, that was a hard thing to do! It brings tears to my eyes just thinking this.

I didn't understand how resiliant and loving children can be. Our 5 older children have been so patient with a mom who has had limited time and attention for them and were willing for their baby sister to get all of the time, love and attention that she needed. They have showered her with that as well and it is precious to see!

I didn't know that the sweet heart of my oldest daughter would be moved to start a project to help other heart babies get the help that they need.

I didn't know I could be a really good nurse - learning various medical procedures, equipment, rates and measurements and more. I never envisioned my bedroom being a place with so much medical equipment. I'm thankful though we could care for her at home and not have to spend endless months at the hospital as some people do.

I didn't know that feeding could be such a struggle. I have always nursed my babies and loved the ease and beauty of that relationship. I didn't know I would feel like such a failure when this didn't work out.

I didn't know the fear of waiting for various test results and the relief and happiness of hearing that something tested just fine! What sweet words to hear "normal" in regards to her hearing after having her fail the test repeatedly since birth.

I didn't know the JOY of having a day with no feeding tubes. The thrill of seeing my daughter eat on her own after 8 months of using a feeding tube. I didn't know how important it could be to have a pediatrician that truly knew my child and one that was available at any time for questions. I didn't know what a blessing it would be to have our wonderful ped willing to see us on her off days when we were frightened by what was going on with our daughter.

I didn't know that despite all of my efforts to protect my baby, that she could still get a horrible infection - and fight it with strength I didn't know she had.
I didn't understand fully the power of prayer and how it can knit hearts together. I don't always understand how prayer works. I used to think it was about getting what I wanted, but now I think it's more about making me who I need to be, making sure my heart is where it needs to be.

I didn't know that if I just quit fighting to get my way, that the fall into God's arms would be so much easier. The rest and the peace of laying in His arms is so much better than the struggle of fighting for what I think is best.

I didn't know the pain of knowing that some people might see my beloved daughter as a mistake or an error or a project that needed to be fixed. Or the weight of wondering what the future will hold.

I didn't know how much I would love this precious little girl who has already changed my life in so many ways.

I didn't know that one so little could bring together so many people in prayer. I didn't know she would touch so many lives and hearts with her story.

I didn't know that being a parent could be so hard - and still worth every single moment for the joy that comes from loving a child. I didn't know the incredible privilege and joy it would be to welcome Eliana Joy into our family and our hearts forever.

I'm sure that I still have much to learn. There are things I do know in the midst of all that is different. I know that children are a blessing - ALL children no matter the circumstances. I know that we have been abundantly blessed in so many ways. I am often told that my hands are full - when truly it is my heart that is full.

I know that through it all God will walk with me each step of the way. He does answer prayers - though not always in the ways that I hoped or even expected. My sweet girl is a reminder of this in many ways - even her name. Eliana means "My God answers" - and her middle name is Joy. I'm thankful that my God is there, ready to answer me with joy. I have a hope - we all do. We don't know what lies ahead, though we can know that we are precious in His sight - fully loved and cherished.

~Leslie