This post is not just an entry, it is indeed a short story. Settle in for the next few minutes and pretend that you are sitting on the couch with Pyper in your lap. I hope that by the time you are finished reading you will have a small sense of who this incredible little girl is.
Pyper Jo’s 1st birthday. What an incredible journey our family has encountered and endured this past year. It has tossed stuff at us that no family ever wants to experience. It certainly has been an unintended journey. Today’s entry is tough to write. For the past couple of months I have been preparing for this special entry by jotting down my thoughts and reflections surrounding Pyper’s first year of life. I hope that within these words you will feel the intensity of the emotions that are hidden within them.
Here we go…
I have stood in front of toy isles these past couple of weeks desperately wanting to pick out cute and fun toys for Pyper’s 1st birthday. With each trip I would find myself hopeful and excited as I walked the isle. It didn’t take long and the excitement that I felt would disappear. In it’s place there was a sense of sadness that invaded my spirit as the realization of all that is “different” settled over me. Each time was the same (Kmart, Target, Walmart). I went expectantly only to experience the all familiar realization that Pyper is not the normal one year old. Times like this remind me ever so harshly that Pyper is different. It reminds me of all that has been taken from us.
In most aspects of life Pyper is still a baby. At a year old Pyper can’t roll over. She can’t sit up by herself (although she is SO close). She doesn’t reach for toys, therefore she doesn’t play with toys. She doesn’t crawl and walking isn’t yet on the radar for her. She spends her day sitting in her big red chair, lying on her activity mat, standing/sitting in her rainforest activity center or sitting on your lap (this is definitely her happy place!!). The normal progression of baby milestones isn’t Pyper’s normal. She is an uncharted, new experience for us. She presents the unknown. When will she be able to play with toys? When will she crawl, walk, talk? What will her mental capacity be? Will she start kindergarten when she is 5? The questions are endless and the answers are a complete unknown.
These unknown’s, are the thoughts that tug at my heart strings the most and challenge me to look beyond the present to the future. BUT I WANT TO KNOW NOW. I am a planner, a list maker. I want to know so that I know what to expect, how to plan and be prepared. For this season of Pyper’s life, I am learning to be accepting of the unanswered questions and relentless “what ifs” that fill my thoughts.
Let me catch you up on the happenings in Pyper’s world:
- She sprouted 2 teeth a couple of weeks ago. A milestone that she has been working on for a few months!!
- Pyper very rarely gets mad and frustrated, but when it comes to her physical therapy sessions she tends to give us a glimpse of her temper. She of course is pushed to do things outside of her comfort zone, outside of her normal activities, and she seriously displays her displeasure with it. It is so out of character for her that I have to admit it puts a smile on my face. It confirms that she is a normal little one that can (and does) show her emotions and temper.
- Because of her G-tube, we take all of JoJo’s clothes to a seamstress and have them altered so that her feeding tube can easily be accessed from the outside.
- She is very auditory and keenly reacts to sounds. She recognizes the voices that make up her world and LOVES anything musical. She has favorite toys, all of which either light up or have music, or even better, have both lights and sound! She absolutely glows with excitement when she HEARS her toys. She doesn’t have to see them, she just has to hear them and she smiles. One of her newest “favorites” ( a red and black lady bug mariachi) makes her so happy that she laughs so hard that she turns red (see the videos below).
- Her favorite person? Oh without a doubt I would say it is her big brother Gavin. They have a sweet relationship. It is truly beautiful to see JoJo’s face light up when he comes near her and then when he talks to her it is like she explodes with JOY! Gavin is her protector and his heart for her grows bigger and bigger. I love that I am privy to seeing their relationship develop and being there to nurture it.
Life this past year has held mountain top highs and deep, deep valley lows. God has walked with us on a journey of incredible heartache and unspeakable joy. It has meant heart wrenching days, tears shed, faith tested, faith strengthened and heart ache that seemed unbearable. We have heard words of diagnosis that have left us breathless and speechless. We spent too many days in a hospital. We experienced an astonishing an out pouring of love, support and encouragement from our families and friends. We received good news when bad news was the prognosis.
Pyper has taught me that life can be different and it’s okay. Her “different” is unique to her. She has taught me what is means to love FIERCELY, to protect FIERCELY. I truly wish that I could explain what this love is, what it means, how it works, but there just are not words that can adequately describe it. It’s just different. I have come to believe that it is a love that is unique and special and is only given to those whose lives are directly touched by the life of a special needs child. It is a love that cherishes each smile, holds tightly to the sound of her laughter and celebrates each accomplishment as if it were her first!
As I have journeyed on this path over this past year I have often stumbled, at times I walked in great sorrow, at times I crawled begrudgingly and at times I ran. Whether it was a day of great strength or a day of heartache, I always knew one thing regarding this journey…my God was ALWAYS by my side. I NEVER doubted this. It was NEVER my strength that pushed me through a day. It was HIS. God was in each tear that I shed, every prayer lifted up, in each diagnosis that was given. I found Him to be faithful and true. His promises never wavered or failed. His love was constant. He alone is what propelled me to put one foot in front of the other when all I really wanted to do was curl up in a ball and hide from the world.
Does accepting that Pyper is a special needs child mean that I stop praying for healing? Does it mean that God isn’t able to heal her? NO, NO and NO. What it does mean for me is that God is sovereign. My prayer for Pyper is complete healing. I want that label of “special needs” to go away, to disappear. But my deepest prayer is that God would give me faith to trust in the plans that He has for Pyper’s life. My hardest prayer is asking for the peace to accept what He has for her, even if that includes a lifetime of “different”. I will never stop praying for Pyper’s healing because I know that one day she will be fully healed and I believe in the One that knows everything about her and loves her even more that we do.
As we celebrate Pyper’s 1st birthday I can reflect on this past year with gratitude and joy. I am grateful that God blessed our family with Pyper. She is pure JOY. I get her all to myself one day a week. It is a day that belongs just to us. It is my Pyper day. I am so thankful and honored to be her Nana. It is with a fierce love that I wish my littlest one a very happy 1st birthday,
Love you always bunches and bunches and oodles and oodles,
Nana
Today I am THANKFUL for Pyper and the sweet love that she brings to our family.
Today I am THANKFUL that Pyper has taught me that “different” is beautiful.
Today I am THANKFUL that Pyper changed my world and taught me how to love FIERCELY.
Today I am THANKFUL that we celebrate the beautiful life of Pyper Jo.
An Unintended Journey 