Sunday, December 30, 2007


It's funny how, as parents, we constantly talk about the milestones our children are reaching while comparing them to other children to be sure they are "okay." Jordan has been delayed in many of her milestones from the beginning which led us to consistently wonder if there would be more to her differences than just those apparent from the outside. As time has gone on and we've seen her progress we feel confident that cognitively she is up to par even though physically she is a bit behind - all due to the challenges she has had to overcome. One giant milestone for her was rolling over. She didn't roll over from back to front until she was nearly 10 months so when she finally got those legs and arms over we were overjoyed. She is finally pulling to standing and even climbing up stairs. Many of her milestones haven't been just coming naturally so this means work for us and for her.

One milestone we weren't sure she would ever achieve, as funny as it sounds, is sucking through a straw. I figured I was destined to skip the straws and sippy cups and head straight to a real cup. I assumed that her palate would never be repaired to the extent that she could actually form a suction strong enough to get juice, milk, water, whatever out of a cup or juice box. I even wondered if her lips would be able to form a tight enough seal to make it happen if the palate worked well enough (sometimes the muscles don't work after a lip repair and it effects the smile, facial expressions, lip movement, etc.). Through much effort on our part along with Jordan's speech therapist and her occupational therapist she now drinks from a straw! She drank from Noah's sippy cup with a straw last night and it was so exciting. A small percentage of those reading this post can truly relate to this. When you aren't sure your child will ever do a "typical" thing it's a pretty big deal when it happens, especially when so much time and effort has been put into helping them get there. So a pretty minor uneccessary skill has been mastered in the Gray household but it is a huge milestone for us. :)

Along the same lines as the suction is her ability to blow air out of her mouth enough to blow out her own birthday candles. I am certain Noah would be happy to blow her candles out for her for the rest of her life but I'm guessing Jordan will, one day, want to blow out her own. This is another one of those seemingly small steps that really isn't a big deal but it's huge for kids with clefts. Jordan's surgeon told me at the last visit that his hope is for her to blow out her birthday candles someday. I can't wait to tell him that she sucks through a straw already and that we are aiming for Jordan to blow her own candles out on her 2nd birthday. :)

Hope you enjoy the video!


Friday, December 14, 2007

Mile 17

Fresh and excited before the race with my training partners and friends.

Early on...still looking okay

The final mile or two where I told Shan that he had no choice but to run with me.

If you look at the time stamp on this you'll die if you know me at all...I MUST be in bed by 10:00 or I'm worth nothing the next day. I struggle though because there is never enough time between the kids' bedtimes and 10 p.m. for me to get all the things done I need to get done. I am also a night person by nature so I fight to make the good choice of early bedtimes.

I am still up because of all I had to do tonight but also because I decided to check in on my dear sister in Christ (she doesn't know me but I feel like I know her), Christina Levasheff. I asked for prayer in previous posts for her family as her two year old son was dying of Krabbe Disease. It has now been a little over one month since he left this place to wait for his family in Heaven. Devastating! I don't really know what else to say about read her posts just wrecks me every time. Truly, my heart hurts when I read it. I sit and cry and cry as she shares her life on her blog. Their grief over the loss of their beautiful boy is heartbreaking. It all the more makes me long for heaven. For our final, eternal rest.

My life has been whizzing by me these past months at a tremendous pace. It reminds me of mile 17 of my marathon I ran about 3 years ago. The beginning of the race is SO exciting - words cannot describe. I was well-trained, rested, pumped up with thousands of people cheering me on and quite a few friends there for support. Mile 13 was where it kind of leveled off - I was halfway there but there were still people cheering and I was still in the pack with the friends I had trained with. Around mile 14 I got a couple blisters. Ugggg. I had to stop to get them taped and my friends went on but I was still okay. By mile 16 or so I was dying, I was discouraged and it felt like I would never make it. My body burned, my feet ached and my spirit was flagging. I came to the realization I wouldn't make it so I laid down on the grass and cried. I stayed there for about 5 minutes feeling sorry for myself and trying to talk myself into getting back up. Finally, I did. I tell you it was the strangers along the path and friends there to cheer me on (along with God of course) who really got me over that finish line (10 miles later). By this point in any marathon the crowds are much thinner than at the beginning and the end but that made it that much sweeter. Strangers would see my weary face and read my name on my shirt so they could yell, "Go Jen! You can do this! Keep it up girl - you're doing great!!!" My friends and husband were also willing to do whatever it took to get me across that line.
Long story somewhat short - I feel like I am watching Christina and Drake Levasheff run their mile 17 and I am aching for them. I'm not sure how to cheer them on but I don't know how to just sit here and watch them lay on the grass and wonder how they're going to get through this.
I too am feeling the weight of those around me suffering. I am surrounded by families who are losing their children, fighting for their children, watching them suffer and struggle through lifetimes of therapy sessions, procedures and surgeries, treatments that kill their bodies before making them better. These parents are sleeping on cots next to each other in hospitals, in their cars in hospital parking garages, they are wives and mothers whose husbands are in Iraq or they are single moms managing healthcare systems, figuring finances to pay for years of medical care and beyond.
Obvious to me is the fact that God is what gets us through. He is the ultimate cheerleader - our portion and strength forever. He is how the Levasheff's will get through this. He is what will sustain Benjamin's parents, Billy and Jacki as they've had to say goodbye to their 3 year old after a tragic accident. God kept Rocio together as her son Jared lay in a coma for weeks while doctors monitored his constant seizures. Although some parents I meet try to do it on their own it is without reservation that I can promise them that God is what gets me up in the morning as I'm having flashbacks of laying on the grass willing myself to get up and keep running all the while telling myself I just need to rest.

The struggle I find is trying to be the one cheering those flagging runners on while I'm laying on the grass telling myself I can't finish. Again, it is through God's provision alone that I indeed get up and keep going - how then, can I not cheer my fellow runners on?? I memorize scripture as it is God's promises and instructions to us, I meditate on it hourly, I post it in my house, I read it at least daily, I talk about it with my friends and family, I teach it to my children. This is the only way to run the race set before us standing firm on shaky legs until the end (Hebrews 12).

My daughter is not dying but she requires a great deal of care and I am so very thankful for every minute of it. If it were not for her differences and her challenges I would continue living my life thinking I could do it all on my own. I would have no taste of the weight that these parents are bearing. I would not have the constant reminder that these bodies are flawed, that this world is fleeting and that my hope lies in heaven alone. In one way, as my family and friends, I hope tragedy does not strike any of our lives but at the same time I'm tempted to pray that it does touch us in some way so that we can be tested to see where our hope lies.

To see Christina's blog go to I urge you to yell her name and cheer her on. You can email or post responses of encouragement to her on that page.

Wednesday, December 05, 2007

We're Back!

Oh I've been so busy lately I have dropped off the face of the blogging world. I've missed everyone and actually got caught up on one or two blogs tonight as well as changing the look of my page. Cute huh? :)

Our camera died a few weeks ago but I took it apart, dug around a bit and now it works again - barely. I will post a couple Halloween pictures and then I will be back taking pictures again for posting....nevermind - there is a problem with blogger. I'll post later.

It's late and I get up early so I can't write anymore now but will later and will be checking all my friends' blogs asap.

Love, Jen