My daughter has special needs and was diagnosed with cerebral palsy at eight months old. She was born two and half years ago and diagnosed at eight months with cerebral palsy. She was premature and born at 32 weeks. Children born prematurely tend to have a higher rate of having cerebral palsy. This happens sometimes because their brains aren’t fully developed when they are born. We knew there were risks when we received the call to adopt her, but after praying about it, we decided to have faith and trust that God would give us the strength we needed no matter what we faced.
The night we got the call she had already been born, and it was a complete surprise since we had not been matched with a birth mom yet. Our agency asked if we were willing to accept this match since we would need to dedicate our time for the next few weeks at the hospital until she could come home. We said yes!
Adoption Blessings: Excited to meet our baby girl.
The next day we were so excited to go meet her at the hospital. She was so itty bitty weighing in at 3 lbs 13 oz. and 17 1/4 inches long. She was restricted to an isolette and had tubes and wires coming from her everywhere. Unfortunately, we didn’t get very much history information from the birth parents, so we had no idea what her history was or what would become of her being premature. Honestly, it didn’t matter, because the moment we laid eyes on her, she was our little girl, and she was perfect. We met the birth parents briefly at the hospital, and with tears in their eyes, they told us that this little girl was ours.
I spent almost every day with our little girl in the NICU. We did lots of skin to skin. I held her as much as possible and spent most of my days at the hospital. She was only able to come out of the isolette for short times because her temperature would drop, and she was on bili lights for jaundice. After a few days being under the lights, her jaundice levels went down.
Born A Fighter:
She is a fighter all the way. She was born with a great determination to move mountains. I was there to tube feed her. I also was there when she took her first bottle. It took her a few days to get the suck and swallow thing down. Our little girl was in the NICU for a little over three weeks. She gained weight like a champ. We were beyond excited to finally bring her home. The boys couldn’t wait to meet her.
It was fun having a little girl to dress up. She always had a bow in her hair and a cute outfit. The boys just loved having her home, and couldn’t get enough of her. They instantly became protective.
A few months after she came home, we started noticing what appeared to be a lazy eye. We weren’t sure if she could even see. She wasn’t meeting her developmental milestones either. We saw several specialists, and had an MRI completed, which helped the doctors give her a diagnosis of cerebral palsy. She was just eight months old. That day my world seemed to crumble. Life took a new turn that we weren’t expecting, but who does?
The news was devastating. Our hopes and dreams for our little girl seemed crushed. What would our new “normal” look like? It took several months of grieving before I came to a good place of accepting her diagnosis. There are still times where it pokes its head back in and I get sad. I wish I could take it all away and that life didn’t have to be so hard for her. I try to focus on all the good because the bad can really get me down. One day when she is in heaven she will have a new body that will work just perfectly, I look forward to that day, and until then we will keep fighting the good fight.
Are you or someone you loved diagnosed with a life changing diagnosis? Do you have experience with a child with special needs? What storms are you facing in life? I would love to hear from you and get to know you better. Please share this post with others.