Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Our New “Normal”

on September 11, 2013

Ever since we found out Agnes would be a special needs child, many people reassure us by saying that it won’t be long before we learn what our “new normal” will be for our family. Others offer support and sympathy by saying these difficult days will soon be past and we will be comfortable in a manageable routine. Still others reassure us by saying we will soon become “pros” at Agnes’ care, or that the tasks aren’t actually that difficult to master, or that Agnes won’t mind if we make a mistake.

I truly appreciate all the support everyone gives me, and I do not feel like I am left alone to bear the trials of having a special needs, medically fragile baby.

However, it is fairly certain that Agnes will always be a fragile child with many needs and special care. These days are difficult not only because her needs are new to us, but because her needs are many and they are complicated. It is possible that a mistake could seriously harm her. I don’t think it’s likely a mistake would kill her, but grave harm is possible. Only yesterday when I changed her trach tube in the hospital, I forgot to remove the obturator immediately when the new tube was in. I did remember a few seconds later, but a few more seconds could have caused serious respiratory distress that could have ended in someone performing CPR. Serious. Agnes has a safe suction depth for her trach that is measured just to the tip of the tube. If we accidentally suction deeper by misreading the “6” and the “8” or something, we could gouge the tissue of her trachea which would cause bleeding and eventual scarring. That could harm her airway permanently and possibly prevent her from ever being able to breathe without a trach. Serious. Agnes is on oxygen at home and the tube connections are not very good. The end of the tube is too tight to really fit around the connector on the machine and sometimes the tube pops off. If we are not paying attention, the connection could fail and Agnes would not get enough oxygen. If that goes on for too long, her organs and especially her brain would be damaged from lack of oxygen. Serious.

This is why we spent two weeks training with hospital staff, completed supervised hours of care, and took a CPR class. Agnes’ needs are many and complicated. There isn’t much room for error.

So, I do believe that we will discover what the “new normal” is for our family. I do believe that we will soon become “pros” at Agnes’ special care. But I also know that we will always have to be vigilant against error and inattention. Our “new normal” is going to be difficult always, even when it no longer new to us.

I am glad to know so many people are supporting us and offering encouragement and especially prayers! Thank you all sincerely. I just wanted to let you know in turn that you don’t have to offer platitudes about how this hard time will become a distant memory. It won’t. What you can say instead to offer support is

“You and your family are in our prayers.”

“I know it must be hard, but you are doing a good job.”

“We are here to help you. Let us know if you need anything.”

“I know you must feel like you are failing, but you’re not. You are doing fine.”

I recognize that we won’t always feel so frantic and inexperienced, but when it gets easier, it will only get a little easier. But “a little” will be enough to take Agnes’ care from overwhelming to manageable.

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5 responses to “Our New “Normal”

  1. Amy Seymour says:

    Wow, Judy, these past couple of posts have really brought home to me what you and Jeremy must be going through! My heart goes out to you. I will pray for strength and guidance for you — especially that Agnes’s angel (and your!) guide your hands physically as you minister to her every need, and alert you supernaturally when she needs your help. I’ll pray for Stephen, too, that he not feel left out in any way and that he becomes a good little helper for you. (((Hugs!)))

  2. Kathy Schwager says:

    It was so good to talk to Jeremy on the phone today! I can’t begin to imagine how terrifying and stressful these last few months have been for both of you. May God continue to guide you in your time of need. You have my continued prayers.

    It was fun to hear about all of the new things Stephen is learning. What a smart little boy!

  3. mothersuperior7 says:

    You are awesome. Its one day at a time and you now know what that is. As you know we are interested in emergency preparedness and I want you to put on your Christmas list a generator for your house there so you don’t have one more thing to worry about. Trust is a lesson. Trust is a journey. Jesus must trust you very, very much. He wants you to trust him even more. This child has been put into your life to teach you all to trust. I’m tickled that you are going to the Ukrainian Rite Catholic Church. So perfect eh? Just when I told you all about it! Ha! God is good. I’m glad you are making friends and are enjoying the smallness and intimacy of it. I miss ours as does Ed.
    Hugs and kisses to Steven and little Agnes. -marti-

  4. JeneaSwainston says:

    Again, I can’t even imagine how difficult this responsibility is. You know in your head and heart that you are doing the best possible for Agnes’ well-being. She is so blessed to be with parents who are so concerned and consciensious and love her so much. I wish I lived near enough to be a physical help but praying for you all is about all I can do from here. Love you all, Aunt Jenea

  5. AmyRieschl says:

    I’ve been following your blog for some time now, found you from FLAP, I think? I’m so impressed with you and your family, you ARE doing a fantastic job. Keeping you in my prayers, as I know so many others are as well.

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