Thursday, March 28, 2013

Feeling lost

I'll be the first to admit it is rare for me to be at a loss for words... so I apologize in advance if this is a challenge to follow, because my head is all over the place tonight.

I have a confession.

 I have poured every ounce of my soul into getting these girls the latest treatment, the most knowledgeable doctors, and the best therapists. I have done countless hours of research. I have been talking to other families to see if there is something we are missing. I want to - no, need to know - at the end of the day, that we have done everything we can possibly do for them.

I can live with the time it takes to figure out their disease. I can handle IVs and blood draws and spinal taps but I don't know how to help Addison now and it's killing me. She is more than a one-person job all by herself anymore... I close my eyes and the pain in my chest is so strong.

Addison is not happy; no one is happy here right now. I said it. We are failing... I am sitting here gritting my teeth as I type those words. I am suffocating - under the weight of everyone's needs that I am clearly incapable of meeting by myself. Addison needs one-on-one attention every minute she is awake... she just wanders around destroying things. Hurting herself. Hurting her sisters.

Its taking everything in my not to rush into her room right now and take my precious babygirl into my arms.... I could hold her all night. I love her smell, the way her silky blond hair fall across my cheek.  I know this won't last forever and I hate myself for feeling these very real feelings of agitation, grief, and uncertainty about how to help her. She is innocent.... she sticks her little lip out and sobs if I so much as give her a stern talking to.

 But then she unbuckles her car seat and crawls on the floor of the van for the third time on a 10 mile trip, or she screams and throws a chair at one of us, or she takes off her diaper and pees on the couch in the same spot that is still drying from the last time ten minutes ago.... and its just a slap in the face that taunts me on my inability to help her. I could talk to her until I am blue in the face. Nothing seems to reach her. I really thought it was because of her inability to communicate, but now she is talking so much and still struggling to function at the most basic level in our house. She doesn't know how to play without some sort of direction. She is loving and smart and funny... and exhausting. And she fingerpaints in her poop. Because she's Addison....and she struggles. And I struggle. Adam thinks we need to find someone to watch her alone who can give her the time she needs during the day.

Maybe I'm not ready to pass the torch to someone else. Maybe despite the fact that I am burned out and so tired I can barely stand, I want to be the one person who has always been there for her. I want to be her safety net. I want to help her jump those hurdles and leave her obstacles in the dust. But there is a price. Brooklyn. Lily. Audrina. There is a price, time, that I must sacrifice from the other kids. Why is it their burden to bear? They need me too. They need their mom. How do you give it all and when do you know when you simply aren't enough? Hard questions to take in. The tears keep coming tonight, but no answers. Guess I will just keep praying.......


  1. If you have completed a medical access form ( might be called something else in your state) you can get wraparound services at home. A behaviorist and a therapeutic support person would help at home and provide you with guidance as to how to deal with behaviors. Your pediatrician should have names of agencies. When she is evaluated for 3 to 5 services, they will evaluate her social/emotional skills. That should take place about 60 days prior to her birthday.

  2. Not sure which state you are in, but surely there are some sort of respite services available to you. I empathize with you - I struggled for several years with my son ( and I have two other children, one older and one younger), I thought I could do it myself, that I was wonder woman and I put on such a great front to people when inside I was SCREAMING that I needed help. I became very depressed and it almost destroyed my marriage.
    Please find help, for yourself, your husband and your other kids. It is so important for your mental health. I know just how you are feeling and think you are very brave to write what you....

  3. I'm so sorry you are feeling this way. What you described and how you are feeling is by no means saying that you are giving up on Addison or that she is too much for you to handle. You have always looked out for her best interest and having someone to help you with her care is just another way that you are putting her needs first. I would definitely NOT consider this you passing the torch to someone else. Try it with full confidence that you are doing the right thing for her, for you and your family. Prayers for strength and better days ahead.

  4. Praying for you right now. As a person who doesn't know you in "real life" but has followed your blog forever, I can tell that you are such a good momma. Addison is now displaying emotional/behavioral needs that are no less real than her medical needs were in the beginning. Just as you had to seek help then from medical professionals, now is the time to seek help for her emotional/behavioral needs. All states provide services for these things which can include having someone come to your house to serve her there or preschool programs designed for children with special needs. If you contact your local school district's special education department, they can point you in the right direction for what you need. Praying for you and your family.