brain bleeds, cerebral palsy, special needs

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

Please leave me a comment; it lets me know you’re listening!

3 thoughts on “Holding On (for dear life)”

  1. Beautiful Sister-
    I am so proud of you and the faith growth spurt I see in you. Know most of all that you are not alone. All of us who love you will be there as much as possible, but Your King is the one who will never ever leave you! I love you more than you will ever know–and your precious babies!
    ~Your little Sis~


  2. Oh my sweet Hannah, first I want you to know how much I love you, but more than that remember that the Lord is the giver of good gifts and our little Ellianna is the best Gift EVER! I don't have to tell you that your children have been loaned by your heavenly Father……….He picked Ellianna for you, Mark and your precious children. Ellianna works in His plan for every single person in your family. It looks cloudy right now… are tired, exhausted, weary……but you Will come out on the other side.Thank you for your honesty….truth be known your story is going to help touch another Momma who will need to know she can make it……maybe she won't have Jesus……she will listen to you. We are all given things to carry…….but He said He would carry us if we let him to get through the race. Good thing……we would quit. At least I would if He wasn't the one helping me live out this thing called life. Earth is for only a little while……..a speck on the eternity line. We won't leave you either. We are right here. You have to tell us what you need though. I love your honesty. It is rare these days. You will give someone the freedom to be honest……they will trust you.

    Hugs and kisses my sweet friend, I know you don't think you are brave right now… are…'s because of Jesus,
    Aunt Linda


  3. Hello Hannah,
    I am a friend of Linda's and she has shared your story with me..Not only on her blog but over the phone…I know that words are probably becoming just that…WORDS…but please know that my WORDS are true when I say We ARE PRAYING for you and your family…We WILL be on our KNEES in heartfelt Worship and Prayer to our Loving and Merciful God…I only wish I could wrap my arms around you and cry with you and then Worship for He is Worthy to be Praised…

    My the God of ALL Comfort and Joy envelope you with His presence as He walks through the fire with you…

    Blessings and Love to you and yours..
    In Christ


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