Miss Lori is waiting to exhale at the hospital with her daughter

In early November 2008 my youngest daughter started getting sick and my life turned; upside down, sideways, inside out…you name it. Very quickly she started deteriorating, but no amount of tests could tell us why. YouTube Preview ImageThe last recourse would be to do exploratory surgery, but the doctor just didn’t want to open her up. So, we left. No, I mean we literally left. If there was nothing left to do, and no answers were forthcoming, I decided we should leave. I simply packed up all three of my kids and drove to French Lick, Indiana for a week. Yes, I ran away. That was in April of 2009.

When we returned she seemed to get better, a little anyway. She wasn’t as jaundiced. She was actually eating relatively regularly. So we thought the worst had passed. Well, everyone else did. I quietly worried that the storm hadn’t passed, but was instead laying dormant for a little while. Turns out I was right, because later that Summer she started breaking down again. Again we went in for a battery of tests. And again we came up empty in the answer department. The last doctor we saw literally patted me on the head and said, “Well, I can’t figure it out, so just go on and live. Check back in with me in 6 months.” ARE YOU KIDDING ME!

Then we lost our insurance. (Well, we didn’t lose it. I knew where it was, we just no longer qualified for it because I was no longer working regularly on TV.) So, we waited, and waited and waited, until finally we got All Kids. Then we waited another 5 months until ALL Kids finally got the paperwork right and assigned us to the correct primary care doctor. That put us at September 2010, and a month later we were in our third GI specialists’ office. Again with the tests that produced no answers. But wait. This doctor was different. He wasn’t satisfied with no answers. So I got him all of the paper work and notes from the previous doctors, and he read. And he read. And he read. Until he finally came back to us with an idea. He decided that it was past time to go in and look deeper. And so he did.

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For the last two plus years I have been holding my breath. I didn’t realize it. I don’t even remember doing it, but I am feeling the oxygen deprivation now. As I sit here at my daughter’s bedside in the recovery room of Mount Sinai Hospital, I feel the dizziness, I see the white dots, I feel weak. I feel weak with relief, and with an equal measure of fear. I feel relieved that the surgeon has determined that something is clearly not right inside my daughter’s GI tract; that the pain she has been complaining of for the last two years has not been a figment of her imagination, or mine for that matter. Strange thing to celebrate, finding something abnormal medically. But you can’t imagine what it has been like to have doctor after doctor dismiss her pain, pat me on the head, and treat me as though I’m an indulgent, over-reactive mother. You just can’t know the frustration. But the flip side of this coin is the wondering what caused this abnormality and have we taken care of it with the work of today’s procedure? The doctor wants to be hopeful, but the truth is he doesn’t know. He simply can’t know, and neither can we, because we still don’t have a name for this war that we have been waging.

So, I sit here listening to the beeps on the monitors surrounding my little girl; her and all of the other hope filled patients she is sharing this floor with. I sit here and stare at my precious child with an ache in my belly, a lump in my throat, and a tear in my eye that I am holding back just as I have been holding my breath.

I believe this child of mine is a gift. Some might say a gift from God. I don’t deny or agree. (I don’t think I have to identify where she is from, only celebrate that she is here.) I stare at my little precious gift hoping that by sheer force of will my love for her can change her circumstances. And if I stare hard enough, long enough, and lovingly enough, when she finally opens her eyes she will do so to encounter a new reality. One that is pain and sickness free. And then maybe, just maybe, we will both finally, easily and deeply breathe.

SMILE On!

ML

Miss Lori can be found Musing from her Minivan at MissLori.TV , Wearetherealdeal.com , YoungChicagonista , ChicagoMomsBlog , and ChicagoMoms.com. You can also see her Activating to Be Great at Miss Lori’s CAMPUS on Youtube, Facebook, Twitter and LinkedIn.

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Comments

  1. Miss Lori says:

    Colleen, I bequeath to you the drive, the inner strength that has kept me sane through this all. I wish you and your family peaceful days filled with more smiles than tests and doctors.

    SMILE On!

  2. Miss Lori says:

    Thank you Kathleen. I am feeling hopeful for the first time.

    SMILE!

  3. Miss Lori says:

    Thanks Veronica. It was a rough road. Not having answers for my daughter when she was so desperate for help made me feel like such a failure as a mother. It was excrutiating. Often I would just run so cold trying to keep my wits about me. There were people in my life who couldn’t understand how I could be so clinical. But when you face extreme pain, sometimes you have to detach. My shows really helped me. Having to be present and positive with my little fans kept me feeling human throughout. Thank you so much for all of your hugs. That makes me feel human too.

    SMILE!

  4. Miss Lori says:

    Thank you Sarah. It helps to have so many people in our corner.

    SMILE!

  5. Miss Lori says:

    Thank you Shannon. I’m sorry that you are intimately aware of my frustrations. I hope your situation has improved.

    SMILE!

  6. Miss Lori says:

    We definitely found a committed doctor, and I am so very thankful.

    SMILE!

  7. Miss Lori says:

    What a beautiful comment. I can’t tell how much it means to me. I am glad that you feel uplifted by my work. It has always been my way to pay forward no matter my personal situation. We have to lift each other up as a community. I appreciate you lifting me up today.

    SMILE!

  8. Miss Lori says:

    Thanks for your thoughts.

    SMILE!

  9. Colleenmouse says:

    it is so hard when our children go through so much and we dont get answers. I have achild with a life threatening disorder and it is tough watching her go through everything. My heart goes out to you and your daughter. Part of my daughters issues are GI and she has gone through a lot in the last few years too. It sucks watching them not feel good, throwing up, not eating right, etc. I really hope now that the doctors are seeing something wrong they can help correct/treat your daughter!

  10. Kathleen B. says:

    I am so sorry that your little girl has had to go through so much in the last few years. I am sending many positive thoughts and prayers your way that everything will turn out for the better now and that her pain will finally be gone!

  11. Veronica says:

    I know the pain of seeing a child in pain…but that small pain of falling off her roller skates. I can’t imagine the pain you are going thru watching your lil one in pain. Sometimes doctors suck. But we have to remember that they dismiss our pains when they can’t find an answer…it’s them not us. You’re a role model in keeping the faith in your daughter’s pain, even after the MDs dismissed it. Sending you lots of hugs.

  12. Anonymous says:

    Oh, Lori, I had no idea you were dealing with this. I can’t imagine how utterly frightening and frustrating this has been. It’s so great that you finally have a doctor who will try everything he can to find out what is wrong, and how to fix it.

  13. Hi Miss Lori – You and your family are in our thoughts and prayers. I know what it’s like to feel the frustration when you have a sick child and the doctors brush you off. Stay strong. ~ @CajunMama

  14. OH my goodness!! I was just telling someone that I am so thankful my doctor has an investigative personality, she leaves no stone unturned. I am so sorry that it has taken so long to get close to any answers, much less solutions. I hope that this IS the solution and will be praying for you all!!

  15. MD says:

    Seriously?? Of course, we (my family and I) would have no idea what you’ve been going through. We think we “know” you because we love your uplfiting music and song, because our kids–even the 2 year old–knows it’s “Miss Lori” when your music comes on the tv, the cd, the IPOD, wherever. I even organized your appearance at our school’s fest in October–now I know it was right in the midst of your family struggles. You, your kids and your CAMPUS kids came and shined on in the worst of weather, when we had no idea that the climactic weathers we withstood that day couldn’t bear any weight against the personal weathers you were facing. Why? Because you allowed your gift to shine on..to smile on…to lift others despite your personal pain. Amazing. May you be blessed and comforted and may your baby be healed.

  16. Tracy @HallofFameMoms says:

    I feel for you Miss Lori. This is not a fun spot to be in as a mother, or a child.

    That’s great you finally found a doctor who has an answer. But your daughter IS a gift from God. Sheer force of will will not accomplish the healing you or she needs. You and your daughter do need God, a personal relationship with Him that only comes through Jesus Christ’s shed blood to forgive us our sins. I hope you’ll take the “Good Test” here…it explains from the bible why we need Jesus and why we can never be “good” enough in and of ourselves. http://www.thegoodtest.net
    I’ll be praying your daughter gets well! Keep us posted.

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