I remember when you couldn’t lift your head. . . when those blue eyes would dance but the rest of you remained limp. Time seemed to stand still as we began to desperately climb after those developmental milestones. . . we filled that time with joint compression six times a day, infant massage three times a day, lots of exercises, and long, hard fought meals and snacks to feed your brain and to make people say “I thought he was supposed to be failure to thrive?” with puzzled looks on their faces. . . . we painted our lips with bright red lipstick an drove six hours twice a month for specialized speech therapy. . . we prayed . . . we begged others to pray. . .
it felt like you would never crawl or walk or jump or climb. It felt like we might never hear your stories or your thoughts. . .
And today you jumped out of bed, got dressed, and spiked up that white blond hair – – you put your backpack on, ran out to the bus and said, “Good Morning, Coach Henry – – I’m a kindergartner now!” . . . . . .
And twenty feet behind you stood a woman. . .
whose pride and love for you cannot be measured. . .
whose every breath and hope is for God’s greatness to be revealed in your life. . .
and she thought to herself. . .
where has the time gone?
And she reminded herself. . .
You knew this day was coming
And she said to her God and her son. . . .
But I also knew you have been coming for this day. . .
J – – -You are my hero, my heart’s passion , and the delight of my soul. . .
Go Get ‘Em!
“. . . because they saw that he was an extraordinary child, and they were not afraid. . . ” Hebrews 11:23
I believe there are two kinds of people in this world: WISHERS and WORKERS. Wishers sit around and they wish that there situation would change, that things would get better, that something better is coming. They wish they hadn’t done this or wish they could accomplish that. The word “wish” sounds like an active verb but it is so painfully passive.
Workers on the other hand get their heads down and their bums up. . . and they work. They toil. They labor. They persist and they push. They pull and tug. They will push a peanut with their nose for a mile if that is what it takes to get it done. They don’t quit. They don’t question. They are not caught sitting around and wishing because they are busy going about the important work they are called to. . . They don’t stop to look around very often but when they do – – they have covered a lot of ground. They have grown. God has taken their effort and He has brought it to the pinnacle of what’s possible.
I consider myself to be a worker. God and I have been working on my character for a long time. We have a long way to go, but I am doing my best and He is sure to do his. Today I had some work to do. I needed to go to J’s school and meet with the kitchen staff. I needed to make sure that they know how important they are in our journey. I had a message to deliver and gifts to bestow and communication plans to make. But as I neared the school, a lump began to grow in my throat and tears began to pool in my eyes. . . my face was tense and every facial muscle I have began working hard at controlling these unexpected developments. My heart began to ache and my soul became unsettled as it started to look for a way out.
You see, there is wishing well in the weakest part of my spirit. . . and some wishes started to float out of that dark place. I wish I didn’t have to have this meeting – – I wish we didn’t have to count calories – – I wish that J had every single part of every single chromosome – – I wish I didn’t have to work at this- – I wish it wasn’t so hard to tell people that he is just like every other child in this world and that he is not like any child in this world at the same time. The worker in me was able to silence these wishes because she was focused on her agenda and the “big picture.”
But when I was done working, I was tired and the weaker parts of me felt strong. And they released those wishes as tears that I don’t need. . . . and I took a deep breath of the Holy Spirit. My shoulders relaxed and I knew that all this work was actually my calling – a calling that I am honored to try to be worthy of ( Ephesians 4:1). As the enemy told me that I do not deserve this rocky road – – I stood in the truth that my God loves me too much to ever allow me to experience what I deserve.
It is good to be a worker. . . it is OK to occasionally get tired. . as long as I rest in what is truly refreshing and comforting and faithful. . . as long as I count my blessings. . . and recognize my Heavenly Father in every difficult step. . . as long as I put my trust in prayers that soar upward and not on wishes that land in the bottom of a well with an empty thud. Yes, it is good to be a worker.
I want to thank you for your “synopsis of our prognosis.” I appreciate your honesty in telling us how horrible our lives were going to be living with this monster of a child we created. . . this genetic “mistake” that would alter our lives. . . mostly for the worse.
You had a lot of power as you held your imaginary crystal ball. But today I write on behalf of someone with more power than you. . . a Master Geneticist who makes no mistakes in the science of His creation. You see – – – you failed to mention a few things to us in your comprehensive description of our future.
I wish you had told me that this floppy baby was gonna run/walk a one mile color run at age 5. . . that he would jump on a trampoline and climb a tractor . . . or walk around Worlds of Fun for a whole day or pass Level 1 swimming lessons. . .
You told us about the horrible fits and tantrums. Yes, we have seen more than a few of those. But I’m proud to say they have happened while learning to play soccer with his genetically typical peers or because he is told “No” to something that any child would find disappointing.
How I wish you had mentioned that his flare for drama and storytelling would delight us for hours. This falls right in line with the rest of his “genetics” by the way. Yes, there is a tiny part of a chromosome missing but the other forty-five are perfect. They stamp him with a natural kindness and interest in caring for others. . . with intelligence ( I know you said he wouldn’t be smart, but he is). . . with humor and gifts like acting and a love for literature and visual arts. . .
You told me he wouldn’t do well in school but you didn’t tell me he would LOVE school. . . or that his teachers would LOVE him. You told me that our food would be severely restricted, but not how healthy and strong we would feel as we navigate that road. You told me that he would be severely delayed with developmental milestones, but not about the exhilarating joy we would feel when he reached them.
I felt powerless and hopeless and weak. I didn’t know the diagnosis you delivered would bring me my greatest strengths as well. I didn’t feel qualified to be the mother of a special needs child. But I didn’t know that was Step 1 of God turning me into a warrior.
So the next time you deliver a devastating speech to a heartbroken family and paint their future using only black paint – – – Call me and I will bring a few more colors. . . and a video. . . . .
of my son. . . reading a pre-K reader. . . .before he goes to T-ball practice.
So I have decided to blog. . . to share the inner workings of mind and spirit. . . but let’s face it. One more person blogging is nothing new. . . but every blog is, in it’s own way, a tribute to another blog. I am a creative person who loves to communicate so I obviously love the parts of the blogosphere that I have visited. There are many family blogs that I follow to stay connected to the parts of my heart that live far away from me. And what Oklahoma girl doesn’t like to see what The Pioneer woman is up to. . . especially if that girl is a Okie city girl turned Kansas farm wife. Blogs are thought provoking and entertaining and all of that. . . except for this one blog. . . on this one night. . . a long, long time ago.
Somehow we made it home from the geneticist’s office after finding out that our sweet little baby couldn’t lift his head because he was missing a tiny, little piece of a chromosome. . he called it a “mistake” of cell division. And then he painted a terrifying picture of our future locked in the chains of Prader-Willi syndrome. . . and the little bit of hope that was left in my heart began to die. It left bit by bit with every exhale and every tear that rolled down my face. When we got home that night, everything was right where it should be. . . except for my future. It was gone. I no longer saw the vision of a marriage with promise and purpose. I thought I was prepared for motherhood but now stood in the weight of knowing that I could not walk this road that lay before me.
It was dark and a little chilly as I began to search for the promise of peace. I typed in “PWS and mom” in my search window. If somehow I could connect to some woman somewhere who was living this life – – maybe I could believe that I could too. It was a blog site that popped up that night. . a simple little family blog about a family on the other side of the country. They looked happy. They looked strong. And providing the foundation for the whole miracle was a woman who happened to be a mother of seven beautiful children. . . three of whom happen to have PWS. . . and there happened to be a link to her e-mail. . . and a tiny crack of light came through my deep darkness. Not only did she happen to answer my e-mail but she purposely led me through the water that was too deep for me to manage until I got stronger and the water got more manageable.
Yes, God saved my life that night. He protected my heart. He held tight to my future. He gave me exactly who I needed at the exact moment that I needed them most. And he used a blog to do it.
so every day that I ask Him to help me live my life in a way that is worthy of the calling that I have received. . . .I know He will and I know I will because I know that across the country she does it too, every day. . . So here I am starting a blog with tags like PWS and Mom. . . of course my first blog would be dedicated to the blog (and the woman) that saved my life. . .