Here is my confession:  I’ve really been avoiding this blog, even though I love writing, I love helping people who are new at this tube feeding thing.

There have been other things to focus on – my older daughter got married last weekend, my second oldest son just graduated from nuclear engineering in the Navy and is home on leave before shipping out, my 3rd son has been playing for his high school’s volleyball team and Natalie just turned 13!

Running to her 13 balloons!:

Camera Competition

All good stuff, right? Right.

However, in all honesty, these days I have been quite weary and worn out from all the special needs.  All the meal making, all the meal feeding, the dependence.  At 13, Natalie cannot read a note I leave her, so I cannot leave her a note if I want to run to the store before she awakens.  She cannot possibly feed herself, although she eats part of a meal orally at least once a day.  So someone (mostly me) has to feed her 4 times a day.

I adore Natalie.  She brings such joy and sweetness to my life.  We have wonderful conversations that I enjoy so much.  She also has meltdowns that only I seem able to help her make sense of….

I wouldn’t trade her for anything.

But right now I am exhausted by it all. Thirteen years of it.  A very wise person that I turn to for support in this recurring situation tells me I need time out for myself.  So I told him I would go for a walk at the mall tonight (not to shop – but at the mall my outdoor allergies are not assaulted) because I can walk and relax and regain my sense of self. But I forgot! It is 9:30 and I am off schedule – still feeding her (although she is asleep) – because her brother had a volleyball game. Then we sang happy birthday, etc.  I cannot go to the mall now – even if I wanted to, I am just too tired.

So tomorrow I am going to leave the house right after her bus picks her up.  I am going to go have coffee with a dear friend.  I am going to sit and center myself, remind myself that I am worth taking care of – that I matter. This has always been a struggle for me – it is not new to Nat’s presence in my life.  But her presence makes it a bit harder to battle.  Lack of time and all.  But it is essential.

How about you? Do you struggle to stay whole in this special needs life?  How do you cope with it? What do you do?  I’d love to hear your experiences, thoughts, suggestions.  Right now, I need all the help I can get!


4 thoughts on “Confession

  1. Struggle…yes. Succumb to pity…I try not to. It sure would be easy though. It’s days like today when Carter jumps up after every bd meal and lopes through th house clapping and squealing that make the unbearable days worth it all. Peace to you…relax today and jump back in tomorrow. You have no idea how much your blog has helped me learn about bd and the tips you give are priceless. Thank you. You are worthy.
    Carter 4 yo, micro preemie. Gtube, mild cp, autism, bad ass yeast invading his little body. But getting it under control with a DAN! Doctor.

    • Hi Susan, Thanks for commenting! I am so glad you are hanging in there. You are right – the days when they are happy make it all worth it! It sounds like you are a proactive mom, pursuing what is best for Carter. That makes you a hero!! I love this quote from Lori Borgman: “You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.”

  2. Hello. I am new to your blog…so sorry for the late comment. I have a 5 1/2 month old daughter with a relatively new Mickey button due to hypotonia induced severe aspiration pneumonia. Since this Is a new experience for me, I can’t yet understand the long-term exhaustion. But I certainly get it on the short-term. My daughter is fantastic, cheerful, and inspiring, however sometimes it all seems a bit much. Today is the first time I am leaving her. She’ll be with my mom. But the fear and guilt is overwhelming!

    • Hi Hillary,
      I am so sorry I haven’t replied sooner… It is hardest in the early days. I understand the fear and guilt when leaving your daughter. It is hard, but so important. I have often remembered the instructions on an airplane about putting on my own oxygen mask first and then my child’s. While it isn’t exactly like that, we do have to remember to take care of ourselves in order to be able to go the distance in taking care of our high-needs children. I am so happy for you both that she is fantastic, cheerful, and inspiring. That helps us get through on the extra-tough days. Stay in touch and let me know how you are doing.

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