It has been a month since I posted last. This in and of itself is great news. It means that everything in Pyper’s world has been good. The Christmas season came and went and a new year began. The beginning of the new year finds me taking care of Pyper on Tuesdays, along with my normal Thursdays (a double blessing). I have found myself thinking about Pyper a lot over these past couple of weeks since 2018 quietly slipped into place.
My post tonight reflects the heart of a Nana that is so often torn between laughter and tears. As I sit with Pyper and am able to spend so much time with her, I find that my mind spends a lot of energy reflecting on her. I find myself with so many thoughts that mingle and tumble within the confines of my head. Some I want to share, others “not so much”. As I struggled with what to write, and what not to write, I realized that putting them down on paper is therapy for my spirit. My journal entry tonight is me being transparent. A pure and raw glimpse into the inner part of my heart that holds a very special place, for a very special little person…
Special needs baby. This is a term that I have truly struggled with. My mind tells me that this describes her in the medical sense. My heart just doesn’t want to fully accept the fact that she is different. My faith doesn’t want to say special needs because I feel like I am saying that I accept the way Pyper is and that I do not believe that God can fully heal and restore her.
I go into Pyper’s room to put away her jammies and I see a closet full of cute little girl outfits. Tags still hang from them. Never worn. With all of her tubes it is much harder to get clothes on her that go over her head. She isn’t allowed to leave the house except for doctor appointments so she stays in her little one piece jammies. She would have been so cute in them.
Pictures. We don’t get those picture perfect photos that the world would look at and say “wow, what a wonderful picture”. Pyper’s pictures show a sweet little girl, with a precious smile and big blue eyes, but with tubes coming out of her nose and tape all over her face to keep those tubes in place. I want those “wonderful” pictures. What I really want is for all the tubes and tape to go away.
I miss being able to give her a bottle. It seems like such a simple task, one that is taken for granted until you can’t do it anymore. I hold her while a little machine sitting on the table next to us feeds her, but it isn’t quite the same.
I want to be able to take Pyper to church with us. She can’t. Her body systems are too compromised right now. If she gets sick, it would most likely put her back in the hospital.
Normal. I have come to dislike this word. It speaks of what isn’t “right”. It is a word unfortunately that often finds itself being used when talking about PyJo. You see, Pyper is almost 7 months old and she doesn’t roll over, she doesn’t reach for toys, she isn’t all giggles and laughter. We don’t know when she will sit up by herself, when she will crawl or when she will walk. I believe without a doubt that she WILL do these things but when compared to others, Pyper isn’t normal. But she is our normal.
Pyper can see, this we are sure of. What can she see, or how much is the big unknown. For me, of all the issues that surround this little one, her vision is what tugs at my heart the most. I often wonder what it must be like for her. I know that she knows no difference other than what she is used to, but how frightening it must be to not be able to fully see your surroundings. She startles easily if there is sudden movement that her eyes catch hold of. When I see her reaction my heart just sinks because I am aware that this must be scary to her. I talk to her constantly when I am with her because I want her to know that she is not alone. There are times that I leave the room for just a bit only to come back and find her crying. Did it scare her that she couldn’t see anyone? I immediately start talking to her, scoop her up and hold her just a little bit tighter as I reassure her that I am right there with her.
None of these are thoughts that I ever imagined would be a part of my world. I don’t like that they find an entrance into my mind. I wish that they didn’t, but the reality is that for now they do. For now…
I have shared the thoughts of my heart that often bring pain and sadness but there is another side. This is the side where I dwell…
God blessed our family with a little girl. She is a gift from Him. Pyper is pure joy. She is content, happy and easy going. She has an incredible smile and big, blue eyes that can light up a room. She is strong in spirit. She is a fighter. She has an infectious little giggle. I take each and every smile and giggle and tuck it away in a place that holds all of her milestones. Her milestones will happen at a different pace than others and that’s okay. I cheer her on each time I hold her. She is loved and treasured beyond measure.
God has taken our family on an unintended journey with Pyper. Not one that we would have chosen, but here we are. Pyper’s journey has plunged our family into an existence that no family ever wants to find themselves in. It is an existence that has changed the dynamics of our lives. It is the experience of raising a special needs baby.
- Tuesday, January 23 Pyper has her quarterly appointment with her ophthalmologist. I am believing that her doctor will see a great improvement, and will have a great report for us.
- Upcoming surgery (Just scheduled for February 14th) for her LADS and G Tube.
Today I am THANKFUL for the hours that I get to spend with Pyper. They are a priceless treasure.
Today I am THANKFUL that Pyper has a mommy and daddy that are such amazing parents.