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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.



Renee said…
I'm glad you all have reached that comfortable place and are able to enjoy this Christmas season. Ivey looks great standing up near that table. What a big girl! Can't wait to read some of those stories you're saving, but for now, enjoy your family.

Merry Christmas!
JMom said…
Praise the Lord! What a wonderful Christmas letter of uplifting sermon of sorts...and an absolute testimony of love, grace, courage, God's plan, perseverence, hope...I could go on and on. My kids were talking about Ivery today. You have NO IDEA what a blessing it is to know her and how happy I am that my children will grow up with knowing someone 'special' being normal! MERRY CHRISTMAS!
Anonymous said…
Another mother of a daughter losing her vision and I were just talking of this "comfortable place" the past couple of days. What a difference time makes.

Ivey is such a beautiful little girl and so very special; not in her needs, but in her heart.

Thank you so much for sharing your journey. We will be looking forward to hearing all about her visit to the center for the VI!

What a WONDERFUL post to read Gwen! You have come a long way in a year. And that precious Ivey has too. I can't even count how many times I think of your sweet girl and smile:) because of all she has over come. Our God is and Awesome God, and he doesn't make mistakes!

Merry Merry Christmas to your whole family. Enjoy the peace and calm of it all (as calm and peaceful as a house with 3little ones can be:). And may 2008 be a year filled with peace, love and joy for all of you!
Alison said…
MARRY MARRY CHRISTMAS to you and your wonderful family. To see how far you have all come is truely uplifting!!! Yay for all of the milestones!!!
Thanks Gwen for that great post. I look forward to the day when I can post about finding our comfortable place -- I know it will come. Ivey looks amazing standing by the table and that picture of the kids looking over her says so much about the grace and acceptance children are willing to give!

By the way, we are home! I put all Gavin's medical jargon on this site

Your family certainly is encouraging to us. Thanks!
Tink said…
I am glad you can enjoy the season this year. I think Comfort comes with time, patients, repetition, and Lot's of love and courage!
Having raised challenged boy's, I know first hand about finially being at a comfortable place, and it's not an easy trip finding it.Ivey looks so content standing in the picture you posted. Have a Blessed Yule..
Melissa Green said…
Merry Christmas to you all!! Ivey,Know and Walker are so lucky to have you and Matt for parents. Ivey is such a joy to watch and I just love the videos you share with us.

Thank you for sharing your journey with us. It is truly a blessing to me to look back and see how far Ivey has come. She is truly a beautiful child. God has big things in store for her!! Merry Christmas and have a Happy New Year

Ava's mommy said…
I'm so glad to read this post at such an important time of year - a time for family. Ivey is really moving ahead! I wish you nothing but normal...I know how much we all yearn for this simple gift. Bless you and your precious girl - I am so glad to know you both.
Will 08 be the MAPS 'reunion'? I hope so!
Merry Christmas,
Megan, Bobby, Ava and Lucie
Sarah & Violet said…
So happy to hear about you reaching a comfortable place!

I think Ivey is outstanding, just look at her at that table!
Anonymous said…
I have been away visiting my daughters and my granddaughters, but I had to check in and see how Ivey is doing. Hapy New Years to you and your family. Okie Nana
She looks so big standing up! I can't believe how far she has come, and I can't wait to see what else she accomplishes this new year!

I've been thinking about you guys a lot lately and am so glad to see how well things are going!! Merry (belated) Christmas :)

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