'365 Days a Year until Infinity' road race

Well, I have officially started running again-not just the ‘Oh, I’ll do it when I get a chance, but the ‘I have to do it today if it kills me’. The latter may prevail in the end. Up at 5:00 a.m. driving to the gym to run on a machine is definitely not my idea of a relaxing run, but I have to start somewhere and it’s better than nowhere. What is it about tread mills that makes two miles feel like five miles? Anyway, the decision to finally get back to it has nothing to do with the New Year or resolutions; it is just TIME!

Like I said a few days ago, we have nestled into a comfortable place. And as I was writing those words and re-reading those old posts of a year ago, my own words started swirling around in my head. I re-read the post about running early mornings with a group of friends and how much I missed it then and found my jaw hitting the floor that an entire year had passed since then. Not only are things becoming comfortable, they are becoming complacent. How did that happen? It's been wild and crazy for so long I think it has snuck up on us. So it is time to start shaking things up. Who says that we can’t start doing things we love to do.... again?

So I started looking around. There’s a 10K coming up in February; that’s my goal. Then in March there is a ½ Marathon, it may be setting a bar a little high, but maybe, just maybe, I can torture myself enough between now and then to at least attempt it. If I get the courage, I might even try to run a short run with the marathoners again. We’ll see how it goes.

Physically my body is not looking forward to the measures it is about to undergo to get back in shape. Ivey will be two in April. So round up to two years add to that nine months of pregnancy, and you have one out-of-shape girl. Oh, it is so time! Mentally getting up in the morning has been easy. It’s the thought of what’s to come that scares me, my lungs and my muscles to death. It is always easier to run with someone, so I wonder if I have what it takes to do this on my own for now.

I have thought a lot about one thing though. We have been running a marathon of sorts this past year. When we were running the hills, normally we did not know it until we hit the top and started coasting back down. I wonder what God calls this race we are now running? Would anyone knowingly sign up to run if they knew it to be ‘The 365 Days a Year until Infinity’ race? One thing I have definitely learned. This race we are running is no longer about out running the bad. It is now about running the hills as quickly as possible, no matter how steep they are, taking deep breaths and knowing that something good and great awaits us at the top. For us that reward are two little boys and one sweet little girl. The reward at the top of the hill is too great to never enter the race!!

So, Happy New Year everyone!

Merry Christmas

A Comfortable Place

Walker's class
We are finally in a place that I don’t think I believed we would ever truly find. Maybe it was possible, I held out hope and to a fine thread of faith that it could exist, but I can’t say if I really truly believed that it would ever happen. It has though. We are here… a comfortable…and more importantly….a very happy place.

There are no unexpected obstacles, and even those things that have seemed so trivial about our daily life have become routine and dare I say, easy. I think this comfortable place is finding us at the right time. Last year we had such an unusual and hard holiday season while Ivey was in the hospital in Atlanta and then the chaos of her coming home days before Christmas sent us into semi turmoil. Reading back over posts from this time last year really made my heart ache for our family. HERE is a link to last year. We have all, not just Ivey, come along way. I wish that I could go to that girl from a year ago and tell her ‘It will be okay’. She probably would not believe me though.

We still take caution with Ivey’s trach; however, the maintenance and upkeep of it has become easier. Our relatives and friends are comfortable with it and don’t think twice about suctioning her when needed. And now the trach will more than likely come out this spring or summer; a year ago the trach was scheduled to be in our lives indefinitely. Ivey is slowly gaining weight to the point she has some chuncky on her thighs. She is up to 14 pounds 9 ounces now and she is long. She just looks healthy. The greatest blessing has been her beautiful green eyes. As beautiful as she is without them, her eyes give her a spark that can not be described with words. All of these things come together to form a basis for our comfortable place.

Now that Ivey is medically sound we have the time to focus on physical progress. She is sitting on her own, rolling and standing with support – all things that were questionable –once upon a time we were not sure if she even had a sacrum bone and then it was concurred that it was present, but with minor deformities. Now it is only a matter of time before she puts it all together and begins crawling and eventually walking. She will not take NO, or not possible for an answer. If that isn’t inspiring, I don’t know what is!

Ivey’s therapies (physical, occupational and speech) are all going extremely well. She has really good therapists who do not set limitations with her. They allow her to work outside of the box, which really is hard to do sometimes. Because Ivey has several physical issues, there is always someone who claims that they know how to treat her or ‘fix’ the problem. I have quickly learned that cumulative years of experience do not necessarily mean that some one knows best for Ivey. Just because someone has been doing something for a long time does not necessarily mean that they are good at it; it just means they have been doing it for a long time. Ivey is lucky that she has optimistic therapists working with her.

With everything falling into place, we are finally able to focus on Ivey’s blindness. Her lack of vision has been a concern, but because of her other more pressing medical issues, it was put up on a shelf. This is a concept that many people can not comprehend – not addressing all of her issues at one time – but if you are a parent of a medically unstable child then you completely understand that issues must be prioritized, and for Ivey her blindness has never affected whether she would live or die. It is now time to take the blind box off the shelf, dust it off and get to work. Now we are focusing on how to raise a blind daughter to be functional, successful and prosperous in a sighted world. At the beginning of the New Year she will attend the Center for the Visually Impaired in Atlanta. I am looking forward to working with people trained specifically for visual impairments.

With all that said, Ivey is flourishing these days and so are we. I have learned that my priority is to make the best path possible for my daughter and sons. Just the other day we were in a store when a girl was talking to me and asked a couple of questions about Ivey, when I told her Ivey was blind she said ‘Oh, I am so sorry’. Without a moment of hesitation I told her ‘Don’t be sorry, we’re not’. A year ago I would not have wanted to make her uncomfortable. Today my goal is for my daughter and sons to know that we are grateful for our differences – not sorry. I can only hope that adults can handle frankness.

For all the worries that have traveled through this past year, worries about the boys and how they would adapt to our ‘new normal’ plagued us often. Knox and Walker had this whole thing figured long ago. They are two big brothers loving, and often, aggravating their little sister. It doesn’t get much better than that.

If I get the chance in the next couple of days, I will tell you all about Ivey’s first visit the Center for the VI. If not in the next few days, it will be after the New Year. Oh, and I will also tell you about the first time Ivey popped her eye out in public. Other than that our cup here is half full. Ivey will have surgery on January 4th. Several things will be addressed – an eyelid adjustment, nose and lip tweaking, a bronch (to check her airway), new tubes in her ears and if time permits, a ABR hearing screen. I think that is it for now.

I hope you all have a very Merry Christmas and Happy New Year. Don’t forget as you are shopping to park away from the doors, don’t be the stalker in the car following people to their parking place. I will leave the link HERE to our experience last year at this time in the hospital parking lot. Remember to be thankful that you can take each and every step your legs permit. Whatever challenges or journeys you are working through; believe me when I say, you will get through it and it will all be okay. It may take time and a lot of LIVING, but I hope you leave the door open for unexpected possibilities to find your own comfortable place.

Gwen

How they handle her

Often I am asked 'How are the boys with her'?

They are big brothers. She is just a little sister. They make each other smile.

Sorry the video is dark, but they were playing in the bunk beds in the shadows. You can't even see Walker, but he's in there too. It may be hard to see their faces, but you can hear it - their smiles - in their voices!

For some reason the video keeps stopping. If the video stops, just tap the little button that slides and it will keep moving. Oh, well.

A girl and her beads

I am adding two pictures to this post. These are the new Christmas stockings. The red dots above their names are their names in BRAILLE.

This is our Elf on the Shelf 'Tinko'. If you don't have one, I seriously suggest you look in to them.

Now let's move on to my sweet girl and her beads.....

Just wanted you all to see how well Ivey's motor skills are developing. She is gaining such coordination. We have attached several objects to Ivey's carrier for her to play with. We have been doing this for sometime, but she has really started showing preferences over certain toys. She is into ribbon right now, maybe it's the silky feel. We attach objects, mainly household objects, with various textures to the ribbon. Without a doubt, her favorite object is her blue beads. It amazes me at her dexterity to shuffle through the web of handing objects and ribbons to find her blue beads. (I guess it is not much different than any of us shuffling through the dark abyss of our purses looking for change, keys or cellphones. We do every day without thinking about it and find exactly what we are looking for.)

This short little clips shows so many wonderful things happening in Ivey's life right now. She has turned another corner. It is great. To the rest of the world, this is just a video clip of a baby playing in a carrier. To me and you it show one happy baby capable of entertaining herself. It shows the connections in her brain firing away. Most importantly, there is one smart little cookie who knows exactly what she wants. She must be a girly girl at heart.

cranberries and push-ups

Here she is loving cranberries!





Ivey has really been working hard the past few weeks. Pushing-up takes alot of practice. She plugs right along with a smile on her face. Yet another task accomplished that most of us do every day without notice. Pretty amazing!