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Today was a fun day and one full of memories. A few years ago Matt and I were on our honeymoon on this date. Then the next summer we were celebrating our first year married at the beach. The next summer we were at the beach again, except this time our feet only touched the sand one, maybe two times. We had Knox with us and he was not quite 4 months old – we learned the hard way that babies, sand, hot sun and nursing don't quite mix. So, the next summer we were home on this date, me pregnant with Walker. The memories play like pictures in my head, but there are many times in Ivey's life that things are a little fuzzy, thus so are many other moments of the past two years. So, it is funny how one day recalled can bring about memories.

Today while Matt took the boys fishing, I rummaged through some of my picture boxes. Sometimes I sit amazed at the amount of information my brain can recall about my children, especially Ivey and her medical jargon. I sat devastated at the amount of time that has passed that I can't recall at all in the times since Ivey was born. I know I have talked about this before and it is something I don't think about often, but it is almost like having a case of amnesia. And honestly, I am not so sure that is not what it is. It is so frustrating to try to remember something, when I just can't. Like this past Monday, it was our anniversary, so Matt and I went to dinner. And for what ever reason, we talked about the day Ivey was born, which we do not talk about often. He recalled events that happened and my brain refused to remember. Why is that? I don't necessarily think it is a positive or negative attribute; it is what it is.

Anyway, I looked through a box that was full of pictures taken during the first six months of Ivey's life. There were pictures of the boys, Ivey, our home, our dogs, birthday parties and friends, the frustrating thing, I can't remember taking those pictures. There were a few pictures of this same day two years ago at our friend's home (georgiamom), and I can't remember being there. We were all happy, smiling, kids playing, but honestly it was a hard time for us all. So sometimes I wonder what else I am missing. And when I look at pictures like I did today, I can't help but wonder how this all affected every one else around us, how it still affects them? For two years we have been so absorbed in our own little entity – absorbed, but having no other choice at times.

Today after I sifted through the box, I packed Ivey up and went to Miranda's house. Matt and the boys were still fishing, so we went to spend time with Miranda, Ivey's Godmother. We sat by the pool with Wesley and some other friends – enjoying a holiday, but I had to sit for a minute and take it in- I felt like crying, not sad crying, just a 'finally' cry. Life has finally slowed enough that Ivey could sit next to her Godmother's pool in the summer sun and sleep. There are so many 'finally moments' here lately. But, I wonder what else is missing?

I realize that this really has nothing to do with Ivey. But sometimes I wonder if I am the only one over analyzing our situation or if it is normal for families like ours. Does it happen like this? One day you wake up and things are easier, life a little more, dare I say –Normal, even if it is our new normal. What do I do now with more time; time to think about things other than how to avoid the next medical malfunction?

There is a future that is oh so uncertain and unclear in front of me. I often find myself in a new unchartered territory. Where Matt still maintains so much of himself from before kids and especially Ivey, I do not. Lately, especially with the trach out and more time to think, I wonder what my future holds. How will I do this? How will I do that? Will I be able to get back to this, or could I try something new like blah blah? Mostly, I find my self wondering if I will do things right. I wonder if I will make good decisions for Ivey. I have spent so much time with doctors telling me that in fact I am doing things right, now it seems like the educational arena may not be so easy. I find sometimes when I talk to professionals that I lack confidence to speak in the appropriate lingo that will benefit Ivey the best.

Realistically, I know Ivey better than anyone. I read her like a book. However, there is always someone looking over my shoulder. Seriously, there are checks and balances everywhere. Ivey has a home health case manager, a BCW case manager, a trach clinic case manager and a couple of other people watching, evaluating every aspect of her life, which in effect evaluates my every move too. They are all very sweet people, but life under a microscope is hard sometimes. That does not happen with 'Normal' children. I feel an overwhelming need to be the perfect mom, yet, I can't quite reach the goal. Actually, I am no where near it.

I feel lucky to work with the people involved in Ivey's care. I feel like those who invest time with Ivey on a regular basis she her as a person. They make her special and don't rely on books or statistics. They are all wonderful people and Ivey is very blessed to have them. They recognize that she is in fact, and Individual. She is Ivey.

I guess you are wondering what this has to do with memories of previous Fourth or July's. Well, it is a little of everything. I guess it is mainly about change. Things have changed so quickly in our lives. Now I wonder if I can keep up. Ivey is excelling so quickly. How will I keep up with her, learn new ways to teach her, make it to appointments, be a good mom to the boys, a good wife and still be a person who can carry on a normal conversation with friends without feeling self conscious? How will I maintain my friendships when time is so hard to come by? When I sat with Miranda today, I missed time we used to share. I worry about things in her life that I have missed over the past two years and I regret that I have missed them. I guess this still makes no sense. It is hard to explain. I just wonder, do all families like ours come out of a fog and need to put the pieces together quickly so not to fall further behind in life, the life beyond a sweet special child?

Comments

Karen Owens said…
I can't say that I completely understand your place in life mainly because we have not gotten there yet but I can "imagine". Adam and I often think about what we will do when this current turmoil is over or at least quiet. We have come to find that our whole lives revolve around Gavin and the next crisis -- what will we do when there are no more crisis' to fix?

Sometimes I fear that I've lost my identity. Do you know what I mean? Do I really even know who I am besides Gavin's, caretaker, "doctor," "nurse" or "therapist"?

I can imagine that it truly is like starting over in life. Thanks for sharing your thoughts!
Heather said…
I feel that your entire post is so very "normal" for families like ours.I believe that the fact we don't remember that beginning part, is our bodies just kicking into survival mode, survival for everyone, Self preservation as well as preserving the lives of our other little ones and in my case some not so little ones. We operate on auto pilot and in the process lose something along the way. An unfortunate by product and casualty of this life event. I look at my little boys and feel I cannot recall very much of their lives in the last 16 months. Time I won't recoup.Guilt gets the best of me often and then I look at Zoey and know she needs the biggest piece right now.Just how it is for now. It's the "for now" that I analyze.How long is actually "for now?"The fog will lift, we have to believe it will, and underneath, the sun will shine, because it always does.The question is will be be ready to soak it up and take it in or will our faces turn not quite ready to embrace yet another change? Sorry for taking up so much space.I just got lost in the moment.It is your moment so I apologize if I stepped in to far.thank you for allowing me.
Jennifer said…
I don't have any answers...except that the mere fact you are so mindful of all these things makes you incredible.
Just wanted to tell you I am praying for you tonight.
I live IN Jesus said…
I have been reading(lurking) your(Ivey's) blog for quite a while now. I do not have a special needs child, but I wanted to encourage you. As a mother, I think that we all "wonder" if we are making the "right" choices for our children. And I know that I get self conscious when having adult conversations sometimes too! I homeschool all three of our kiddos and we NEVER leave our children for very long! SO, I am usually "kid brained" if you will! But you know what God gave Ivey to you and your husband because YOU are the VERY best mom for her. The same is true for your husband. Remember that we serve an awesome God, and He knows ALL the what's and why's, you just need to love your babies and spend time with Jesus--He will guide you to make the "right" choices. On that same note--when I start to feel self conscious I try to focus on whether I am being pleasing to God, if I am then He is the ONLY one that I am to please. We are not to be man pleasers, but God pleasers only! :) I hope that that helped. I love your little family and I know that you do not know me, but I have been praying for you all! God bless.
Sincerely,
Sarah T

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