Sunday, August 26, 2012

The Ugly Truth

Wow! So a few changes since you last heard from the Koetter clan. We have moved back to Jupiter, Florida (my hometown) for Jonathan's job and to be closer to family. I think I honestly thought that this move back to a place I am so familiar with was going to be a walk in the park. Boy was I wrong. Trying to switch all of Dalton's doctors and therapists has turned out to be quite the undertaking. We are literally at the Doctor or at therapy every single day of the week. I feel like I haven't had a second to breathe. To be honest, it hasn't been the easiest transition. We have had a few more medical issues to deal with and try and figure out. I think Jonathan and I felt we were out of the woods for a while but once again, Dalton likes to keep us guessing. We are dealing with a lot of GI issues, spinal problems, and some potential neurological concerns. On top of that, Dalton's upper respitory problems have only gotten worse, the breathing treatments are helping though! I think a lot of my frustration with the move has been due to the fact that when you leave a place (like Atlanta) with such a plethora of Doctors, you get accustomed to having choices for which specialists you see. Not here. There is one pediatric specialist and that's it! I am now realizing to get the quality of care that Dalton needs, some travel will need to take place. We also had an MRI completed last week. He had to be intebated because of the length of the scan. It was a lovely 8 hour day and Dalton kept those nurses wrapped around his 6 little fingers.

 Now, there are also plenty of good things that have come from this move! For one, we bought a new house! Yay! It is the perfect Florida house and we get to move in a couple of weeks. We also get to spend lots of time with my family, which has just been such a blessing. I feel like I have so much time to make up for, and they really do take a lot of the stress away from me. Whether its cooking us dinner on a busy night, cleaning the dishes and bottles, or keeping Dalton so we can do a weekly date night- they have been amazing.
Now that the update is done, the reason for this vent session. I want no pity, nothing telling me otherwise, these are my feelings and I am entitled to them.

Yes, things may appear easy and peachy on the outside. There is an ugly truth though, one that I am finally comfortable putting out there. I feel as if I am drowning. I feel as if I am not being the best mother I can be to Dalton because of the stress I am under from trying to "figure it all out". I am slowly coming to the realization that this is something that I truly need to put into God's hands. I feel like I have drifted in my faith. And that is a hard thing for me to admit. Yes, I thank God everyday for Dalton and what he is doing in his life. But, when it comes to being a great Mom, I question my decisions on a daily basis. Being the mother of a child with special needs is like nothing you can actually understand until you have walked in our shoes. Our life is different. We celebrate the tiny victories, things that may seem minor to most but monumental to us. I am not calling anyone elses problems rudimentary or invalid  but as I said before, this is just a vent session, and all I am saying is that it is just different. This experience has just shown me how truly different every single parenting experience is. All I can trust in is the fact that I am giving 110% every single day to get Dalton the best care I can. I think along with his care, I am realizing that I need to start to take care of myself if I am going to take the best care of him. I finally started talking to someone and I have high hopes that she will be able to help me create this balance in my life. When all you do every day is talk about the medical problems that your child has and is experiencing, you begin to lose sense of reality. Your mind just lives in a Doctors office, and its really hard to shake that and enter back into real life. That balance is so essential and I am really hoping to be able to achieve that. This has definitely been yet another journey for our little family. But honestly, when things get crazy, we just stare into the biggest baby blues and all our anxieties just seem to melt away.

A couple recent pictures and the best video ever!


video
Dalton has just discovered how to bounce in his exersaucer. And to say he loves it would be an understatement!

One day after PT, he was very pleased with his performance!

Dalton and Gigi at his first reggae show, he loves live music like his Mama.


9 comments:

  1. Thank you for your post, as I was so happy to see that Dalton is doing well. I have often thought of you and your family, and continue to send prayers your way. I understand what you are going through, as our grandaughter was born very early, and has CP. I remember those early days after Lexi was born, and how hard it was for our daughter, as she lived at Children's Hospital, while we took care of our grandson. Take one day at a time, and know that you are not alone, as we think of you, and pray for you each day. Together with our prayers, you will make it through! Best wishes to you and your family! The Price Family, Newark, Ohio

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  2. Does Dalton qualify for any home health nursing services through the Katie Beckett waiver, or anything like that? (just to give you a little bit of a break) Is there a Babies Can't Wait equivalent in Florida where the therapists could come to your house?

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  3. OH MY GOODNESS he is the cutest & those dimples!!! He has grown so much, thank you for posting pic's! I pray that Dalton continues to move forward no matter how slow and I pray for strength for you. Every day is a miracle!

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  4. He is adorable!!!! Those eyes and dimples have melted me. I've been checking back and forth for updates. I could kiss his face off. He seems like the happiest little fella.

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  5. Kara, please hang in there and know that you are not the only mama that feels as you do. I am not going to try and claim that I understand what it is like to have a special needs child, I do know what the "tunnel vision" is like though. Every mother feels sucked into that world of kids, kids, kids... Sometimes when I go outside, I have to remind myself to look up and out at the big beautiful world that God created because I am constantly thinking about the next task. God chose you to be Dalton's mother for a reason. He gave you the child He knew you could handle...the right baby. You are NOT failing him in any way. Taking care of yourself is critical and I'm glad that you have realized that now so that your relationship with Jonathan and your relationship with Dalton can grow. Having your family around now will help SOOO much with giving you the breaks you need. Keep up the awesome work and thanks for the update of your DARLING boy!!!

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  6. Hi Dalton
    My name is Jenna. You are a brave courageous fighter, You are a special miracle from god, a gift from above, earthly angel, a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.


    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior
    http://www.miraclechamp.webs.com

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  7. It is SO hard when all you talk about is doctors--and that is all that you have to talk about because that is the reality of your life. It is even harder when there are no specialists around. We drive as far south as Miami Children's Hospital (a 3hr drive from PSL) to take our son to specialists. That makes even the littlest doctor's appointments just that much worse. I feel for you, but I think it is great that you put everything out there because I think that is a huge part of what people don't realise. A lot of people think it is much easier than it really is. And, it is just not that way. Even the smallest decisions become difficult when it comes to the care of your precious Dalton. I pray that you will soon transition back into "routine" life--although, routine for you is not as simple as it "should" be. Many prayers continued your way.

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  8. Kara, do you still blog? I just had a baby on 10.11.12 with partial trisomy 13 and it has been so miraculous in so many ways and so terrifying. I stumbled across your blog whilst googling and found so much in common with you and your situation, thought, beliefs, and feelings. Currently, my 5 month old princess is in the hospital and has been suffering from dangerous seizures. She also has 6 digits on either hand! I hope to hear from you. My email is shannonsimmons66@yahoo.com and I live in California. Take care!

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  9. Hi! I've followed your blog forever. How's Dalton doing?

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