Holding On (for dear life)

As Mark and I looked into adoption, we were drawn to children with disabilities. We felt we were strong enough and well-equipped to meet the needs of a child who might be passed over by others. Although we filled out our check list for a variety of special needs, I felt especially drawn to downs syndrome and cerebral palsy. I guess it was my pride that made me so sure I could handle these things...

Once again, God had plans...

I haven't detailed all of the things we have been through with our 4 month old, Ellianna. In short, after bleeding in her brain due to premature delivery, she has had 3 brain surgeries and now has a permanent shunt from brain to belly to help her regulate the pressure inside her head. As these complications arose, we were told she was at high risk for disabilities, especially cerebral palsy. We were told we needed to get her into therapy as soon as possible to improve her outcome.

I have a confession...

When I first tried to accept that our daughter could be disabled I was very angry. I thought how dare we be given this burden when we had already said we were willing to accept and love a child that had been abandoned because of this. I felt extremely guilty. It was one thing to adopt a child that has challenges, but to give birth to my own that was this way made me feel responsible....like I had caused this harsh imperfection. Trying to grasp all of this and turn it into something good seemed impossible and I felt like I was sinking. That is probably very shocking for some of you to hear, but there it is, the sin in my heart.

Since her most recent surgery, we were told our sweet little Ellianna has many signs of cerebral palsy. So, ok. Here we go. I still have some unsettling thoughts about it, but I am trying to embrace this new chapter. God is showing us the trials of OUR OWN little baby having special needs... teaching us perhaps how much harder it is to love and care for one chosen by adoption? I don't know, but I do know we are right where He wants us, so I am trying my best to be ready for whatever He has to show us. Life over the past many weeks has been a whirlwind that has left me little time to contemplate. We hope we are at the tail end of surgeries for awhile and will have as long a break as possible until the next time she sees the inside of an operating room. Our days are filled with trips to physical therapy, occupational therapy, neurosurgeon, pediatrician, and now weight checks and food therapy. I feel like I have to hang on or be thrown off. I have to remind myself to be still and to take the time to enjoy the small moments.

Here we are; at this bend in the road. Wondering what's around the next corner. A little hopeful, a lot fearful, but clinging to faith. There are still days I'm frustrated and days I question my strength. There are days I pass the section of little girls shoes and burst into a storm of sadness and tears wondering if I will ever get to pick out sweet little shoes for Ellie, or if she will even walk. I keep repeating the verse a special friend gave me: "He who began a good work in you will carry it on to completion until the day of Christ Jesus." (Philippians 1:6) This continually reminds me that this little angel was brought into our lives for a higher purpose.

Please stay with us as we embark on this journey. Celebrate the victories with us, and hold us up in the battles. We would be nothing without our army behind us.
Her most recent surgery, still healing.


All girled up---4 months old

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Catching Up

LIFE got in the way of blogging. So here is a little update on life…

Little Ellianna is 2 and a half months old now. She tipped the scales at 6 pounds today!

The past 2 months have been a roller coaster of ups and downs. We finally got Ellie home after battling brain bleeds, digestive problems, and trouble feeding. She had 3 blood transfusions while in the hospital and surgery to place a shunt to drain the excess fluid from her brain. She fought hard and even gave a little attitude. 2 days after celebrating Easter, after 8 weeks in the NICU, we tucked her tiny little self into a car seat for the first time and drove her home to begin the rest of her life.

We all kept pinching ourselves for the first few days, basking in the surrealness of having her home. The older 3 are mesmerized by her. She sleeps a lot. Moments of quiet are punctuated by the shrill squeal of her monitor alerting us that she is not breathing or her heart rate is too low. She still will not nurse much, but she takes a bottle like a champ. Most of all, she is perfect. Beautiful, soft, delicate. A CAPTIVATING reminder of what an awesome Creator we serve.

This past week she had surgery again. She needs to have a permanent VP shunt put in to help her brain function. Unfortunately, there is still too much blood in her brain to do this. They went in on Wednesday to provide a temporary fix for now. We are expecting in 3 or 4 weeks she will need surgery again, hopefully to install the permanent shunt.

The first surgery was terrifying. She was so tiny, so fragile. They had to resuscitate her…then she was not waking up… a whole nother day on the ventilator…scared she might never wake up. She held on though. The second surgery was smoother. No complications and she woke right up. Being more alert this time meant she had more pain, but her cries were strangely comforting.

Today I was thinking… this journey has been hard… I have been scared and at times angry. God has provided for us all along the way. He has kept her safe and allowed us to keep His precious gift. I know that is not the case for every parent. Mommies and Daddies have had to kiss their sweet babies goodbye. They have gone home with empty arms and aching hearts. It humbles me to realize how GRACIOUS He has been through all of this. I want to savor each precious moment with Ellianna.

I was reading through my friend Linda’s blog today; she has been posting about Ellianna and asking her friends to pray. There is note after note of people….families, parents, children…on their knees for our sweet baby girl. People we have never met or even spoken to. People whose names we do not even know. The tears flowed. I am so humbled and touched and awed at what God is doing for us. Makes it seem silly that my faith is so small.

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