Monday, January 11, 2016

Normal

I have been moved to write this update several times over the last couple of months, but I haven’t been able to actually sit down and do it. So what stopped me?
Many of you have told me you were impressed by how positive I was in the first few posts. The truth is I haven’t always felt positive over the last few months. Having James home from the hospital by myself, having Alex back at work full time, it was hard. There is no other way to describe it. 
I have spent the past 3 months trying to find this mysterious thing commonly referred to as “normal”. I’ve found myself hearing/using that word a LOT lately.
Doctor XYZ: “What does a normal day look like from James”
Therapist: “The normal range for X developmental milestone is….”
Me: “How is that different from a normal baby…?””
etc.
What I have to keep reminding myself is that “normal” doesn’t exist. James is writing his own story. Yes, we can work to get him on a schedule. Yes, there will be days that are more typical than others. But expending energy trying to figure out how he compares to “normal” is a waste of time and could be a major point of stress if I let it be.
So what have we been up to?
Over the past 13 Weeks, we have gone to 12 doctors’ appointments, and had 12 therapist visits. We will average 1 appointment a week with various specialists through his first year. At that point, hopefully, we will be able to go longer in between visits.
Why so many appointments?
Some were typical pediatrician appointments, some were following up from his hospital stay, some were introductory to help us understand his diagnosis, and some were to prepare us for his upcoming heart surgery.
When is he having his heart surgery?
This is the (late) update that is going to get me in the most trouble with the public… James is having his heart surgery next Tuesday(1/19). We found out the week before Christmas that the cardiologist wanted to move ahead with the surgery earlier than expected. Everything is fine, but at the slow rate that he is growing, they feel it would be more beneficial to go ahead and fix his heart now rather than wait.
Why is he having surgery?
James has what is called a Large VSD (Ventricular Septal Defect).For those of you who know someone with this defect, it is fairly common. His specific hole is not correcting itself like some others may have, and that is why we are having it surgically closed.
You can read more about VSD  here.

We appreciate all of the support and kind words from all of you over the past several months. Keep the prayers and good thoughts coming! I truly believe that they are helping.

14 comments:

  1. While I know these past few months have been hard, you and Alex have handled it with grace and good humor. A friend of mine has a sign that says "normal" is just a setting on the dryer. I love you all ��

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  2. We couldn't be more proud of how you are co-writing James' story

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  3. Starlette PicketteJanuary 13, 2016 at 1:50 PM

    You and Alex are amazing! Baby James is lucky to have this loving, nurturing family. And there is no such thing as "normal" when it comes to kids! Just accept each day as it comes and thank God for His guidance. I need some baby time - let me know when you need a babysitter.

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  4. I am glad to have a update on James and how you all are doing. Many people are praying for you all.

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  5. James is a miracle no matter what normal is for him or you two. And besides being a miracle, he is the cutest baby on the planet. We love you all.

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  6. Thank you for the update. You are a remarkable mother. I am sure this has been very stressful for you all,but you seem to be handling it with grace. So proud of you. Many prayers are being sent your way from many that love you and care so much. Will be saying extras on the 19th. Hugs

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  7. I'm so proud of you and Alex and, of course, your adorable baby. Many milestones are yet to come. I know you are going to meet every one. Thanks for the update.

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  8. Great to hear from you, as I think of you often. I am glad things are going well, and I'm sure you're ready to have the surgery behind you...good luck on Tuesday. But I will say, there is no "normal" baby definition, and as you say he will write his own book; they all do. Take one day at a time and thank God for your precious gift everyday. He is a sweetie~

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  9. Happy "3-Month" Celebration!!!! Precious pictures of your wonderful gift!!! Each of you is with me daily as I pray.....savor every moment. Can't wait to see and hold baby James Alexander.....

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  10. Every child is his/her own normal. Praying for strength for all as you continue on this wonderful journey called parenthood.

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  11. James is a rock star!!! Who cares what "normal" is... It doesn't exist

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  12. Prayers to James, you and Alex for his upcoming surgery. I know it must be difficult to find the time for this journal but much appreciated! Love and prayers to you all!

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  13. The only thing normal is normal for him. None of us are "normal" if you think about it. Each of us have a way of being, doing, etc. You all will adjust and determine what is right for him. Just when you think you have sometthing "figured out" he will surprise you. He is precious! I applaud you for seeing answers and doing all you can. That is what being a real Momma is all about. Keep the faith and keep pressing on. I'll be praying about his surgery. Sending a big hug.

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  14. As you are aware. I have no experience with babies. For me, James is normal. He sleeps, poops, cries, smiles. Sometimes he scares me. He also fills me with excitement when I think of being able to watch him grow and develop into the person he is going to be under the guidance of you and Alex. I am so glad that you are allowing me to be a part of his life. Thanks for sharing him. We love you all and are here to help whenever you need us.

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