Wednesday, June 18, 2008

circles & experts

I'm running in circles. And there's no end in sight.

Poor Lucy.

I sat there in the lab today holding her with all my might while she flailed around trying to escape the ominous needle drawing her blood for another test. As she slipped out of my grip a couple times in her panic I thought to myself, "something has just got to give." This poor girl hates doctors. If it's not the pediatrician, it's the ENT. Or the neurologist. Or the geneticist. Or the orthopedic specialist. Or the allergist. And man oh man has she ever learned to hate those places. As soon as we step foot in one of those enclosed offices she throws a fit. And I don't blame her one bit. In fact, I wish I could join her and we could cry it out together. She's sick of it and so am I.

Each time we try a new doctor it happens: I get my hopes up. I gear up thinking to myself this one is the one that will have some answers for us. This is the doctor that will make everything clear, tell us what we need to do. Give us a prescription to fix everything. But every time I leave I feel my heart sink. No more answers. No more information. Just more questions and more worry.

The geneticist told us Lucy may have some weird disorder I came home and looked up and knew right away that's not it. She told us she wants us to do more blood tests, but somehow can't get us the lab order.

The neurologist told us the MRI was "normal" but that there was a small cyst in the brain. I told him that was probably her strawberry hemangioma. He looked at his records and told me I was right.

The allergist told me her crazy break-out of hives and hundreds of red dots all over her body a couple weeks ago, and her continual goopy eyes that are sometimes swollen closed in the mornings may be due to something as insignificant as sensitive skin. I'm sorry but I know he's wrong.

The ENT had us wait for so darn long that by the time he arrived to take a look at Lucy she was a complete basket case. In a very impressive fit of "I'm done being here" she smacked her face on the floor in desperation, popping her lip open resulting in blood all over and giving the doctor not even a sliver of a possibility to check out her ears, nose or throat. She was simply not having it. And that was that.

The pediatrician gave me a guilt trip when I told him I didn't want to do vaccinations. But in my heart I feel like we need to wait.

My point is that the more "circles" I go in, the more I come to the conclusion that no doctor has the answer. No one's going to give me a prescription to fix everything. These doctors may be experts in their own individual fields, but they're not experts on Lucy. I've realized that I'm the expert there. The one and only. I'm with her 24/7. I'm her mother. I adore the air she breathes. I know that she loves bananas more than life itself. I know that she hates being in water. I know the look she gives when she understands but she just wants to act stubborn. I'm the one who sits with her for hours each week while therapists work with her on various new skills. I'm the one who's heart yearns to pick her up in the middle of the night and just snuggle with her (I don't do it...I'm not that crazy...but that doesn't mean I don't want to). I'm the one who, even when she's screaming and throwing her best signature tantrum, my heart melts to see those crocodile tears run down those chubby cheeks and fill her long eyelashes plump with moisture.

I may not be a health expert, but I am her expert. And I'll get to the bottom of this...some day. Until then I'll snuggle her up and watch. And pray. Because I love that girl with all my heart. And someone who loves you that dearly is the best kind of expert to have on your side.

23 comments:

Tracey said...

And she will NEVER fail with a mother like you, you are her advocate! Hang in there and keep praying for answers, sometimes it's just not on our time frame. You are a great mom, Shawni!

julie said...

Stick to your guns. Mother always knows best. And man, she has the best mother.

I have had similar experiences with doctors. When I knew something was wrong, and they blew me off, or misdiagnosed. And I did my own prayer and research and diagnosed my kid correctly.

Keep your chin up.

Kara Jayne said...

She is one lucky girl to have a mother like you!!

I'm so sorry that it has been such a roller coaster. I love you so much and hope you know that I would LOVE to help in any way I can!!

SydneyMin said...

It's amazing what the faith and love of a mother can do. I had a prof at BYU that had two boys with some health condition that doctors couldn't cure. She had a dream that revealed some sort of new method of treating the disease, and she tried it and it worked and she actually was written up in a medical journal with this new treatment. Anyway, my point is - never give up! You are awesome, Shawni :)

april hickman said...

Shawni,

This post was beautiful.

Lucy is beautiful.

You're beautiful.

I know you have that "never give up" attitude, and that is just what she needs. Be strong.
She is lucky to have you.
April

tk&gang said...

Hey Shawni. This is Kristin Lyon Esplin. I was your RS president back at BYU and roomed with Alysa Hatch Whitlock. Recently, Alysa shared your blog and Scott Simas' blog with me. I have to tell you, you are such an incredible mama! I am so impressed with you, in every way. I just loved your blog on Lucy. If you don't mind, I am going to share it with my friend who is going through a similar journey. I feel she will find hope through your words. P.S. You are such a talented photographer. I remember thinking 15 years ago that you would make such a beautiful model, but you were definitely meant to be behind (vs. in front of)the lens. You are such a talented individual. It has been fun to see this beautiful family that you and your husband have lovingly built together. KUDOS!

Caryn said...

Good for you! No one will ever be more of an expert on little Lucy than you are. I know it is hard to search and search, but you will find the answers as long as you don't give up!

meegz said...

I won't say I undertstand what you, Lucy and family are going through. But I do know that our son helped us to learn some good lessons in his diagnosis and life since. He has aspergers syndrome. We were thrilled to finally dianose him, basically I diagnosed him (after tons of tests that told us "nothing") Then took him to the Dr. to tell him of the dianosis and he put it on paper.:) I hear it works that way more often than not.

Heavenly Father has entrusted her to YOU & your husband -- and no one else. Sounds like you know this and are gonna run with it. GOOD for you -- you are her only advocate!!!

Denae (a.k.a. D-dawg) said...

You are SO incredibly right. I've had to learn that over the last couple of years with some medical issues we've dealt with. Doctors don't have all of the answers and especially they don't know exactly what is right for your situation. They're just guessing and trying their best. I'm glad you know to go with your gut. I hope you'll figure it all out. It must be so stressful to have to deal with all of that. She is so darling though!

Jessie said...

I so believe that we know our kids better than anyone and to ALWAYS listen to your heart!
I had a friend recently tell her Dr. that she didn't feel comfortable giving her 4 month old baby 5 vaccinations at once. They made her feel stupid so she went ahead with it. A couple hours later her baby was having convulsions and ended up in the hospital for 3 days, nearly died. She said to me always trust your gut! It knows.
I am so sad for little Lucy! She is so dang cute. It must be so hard to watch her go through all of that as a mother. I sure hope they find something soon so she doesn't have to keep going to those mean old Doctors! Sorry so long....Hang in there!!!!

Nichole said...

I totally am with you 100%. We as mothers have to go with our guts and do what is best for our kids. Every situation for every kid is so different. Doctors can make good guesses but I am learning they dont always know. We have witnessed that over and over at our house. You are a great mom and I know you will help Lucy more than any doctor can.

Claudia said...

Shawni, I have seen so much growth in Lucy over the past few months. Everything you are doing is working! We would love to have her come over to play. She can practice her favorite word of all... "doggie". love, claudia

Kerri said...

Oh that post gets me all teary-eyed! I can't imagine anything much worse than seeing your child struggle and not knowing how to help. But I do know that you are one amazing mother and if anyone can get through this sort of trial, you can!! She sure is so very cute and so very lucky to have you by her side. I hope peace will come to you during this difficult time.

lovinglife said...

Shawni
You are such a great mommy. Lucy is a lucky girl to have you take such good care of her. My kids had the goopy, swollen eyes too. My baby still has it. I give her Claritan every morning and that seems to really help all the extra fluid her little body makes (i.e. ear infections, allergies??) Anyway, you are awesome. I know you will find your answers. Darcy

Jean Allen said...

Shawnie, I only have one daughter, but suspected 20 years ago that she was severe ADD. All of the professionals made me feel like I didn't know what I was talking about- "only boys get ADD," and I was even in the field of special ed! When my daughter finally dropped out of high school her senior year, she was deemed "at risk" and tested. Guess what? Severe ADD!!! Yes, I would have done things differently if I had known, but I didn't know. And I did the best I could with what I had. At least she and I know now and are working with it. It seems almost all parents have something to deal with when it comes to children. I truly believe we are the parents that are best equipped to love and teach them. Sorry this is so long! All will be well!

deana said...

Shawni, can I just say you inspire me. You make me want to be a better mom and person because you are so patient and amazing! You have no idea how much the things you and Lucy are going through have touched and changed many lives already. I wish we saw eachother more because I just adore you and your beautiful entries!

Maureen said...

You know I love you, right! All I can say is that there is nothing like a mother. As hard as medicine may try to find answers sometimes they don't come fast enough or in the right way. Don't give up! The hardest part of my job is that these little ones can't tell me exactly where it hurts. Let the spirit guide. You are awesome (but I don't get the vaccination thing :)).

Sunshine said...

Shawni: It's me, Lisa's sister... I loved this post. My husband is a doctor, and while I have more respect for the profession than I can say. I don't believe we are to turn ours or our children's health completely over to them. Science is only as good as our current information. Mom's have much more than that. I vaccinate extremely late and feel really great about that. I love reading your blog! Check out this blog www.adailyscoop as a reminder of pool safety with your baby...

seven smiles said...

We had an experience with one of our kids where the doctors wouldn't perform a surgery because the "abnormality" was within "normal limits." I just had a terrible panicky feeling that wouldn't go away and I kept insisting that they do it anyway. Finally they agreed and during the surgery they found out that behind the "within normal limits abnormality" was an even larger, potentially life threatening abnormality that was a simple basic fix. Trust your self and heavenly father and everything will work out as it is supposed to. There is a reason that YOU are her mother. Best wishes. She's such a cutie.

nanapothier said...

You are absolutely right! That's why they call it "practicing" mediciine. They are guessing the best they can but there is no substitute for the love of a mother and the spirit that directs her. So sorry the answers can't come immediately, but we can trust the Lord to you each through the journey until all answers are knowns. Know how very dearly we love you.

Brigitta said...

My heart is sad when I think of your frustration, worry and concern for sweet little Lucy. I just hope you get to the bottom of it all. I totally think you just stick to your gut, a mothers intuition is a powerful thing. Good luck with all the drs. and specialist. I can't imagine how tiring it is, but she is lucky to have such great parents and family to support her and help her. You are amazing Shawni!! Love ya

Dale & Christina said...

Oh...I feel and know first hand your frustrations. As with Blake, I have spent countless hours, money, and tears on the big question "What is wrong with him?" Doctors are simply guessing. You are your child's advocate. Although you can never give up on finding answers, try not to get too caught up with the negativity surrounding the search for answers. (if that doesn'
t make sense, call me) Think about what you are supposed to be learning from mothering your child or what is your family learning from her as well. As with many things, your answers may come line upon line, precept upon precept(sound familiar) Maybe this is not something you can totally FI right now. Sometimes letting go a little bit and accepting who they are and the positives that come with them give you peace in the moment to moment living with them (hard times and all). For me, it was letting go of some bitterness and denial of my child having a problem, and me being quite the FIXER, couldn't fix it. Once I starting letting go of fixing it and accepting it, some of the answers have kept coming to me a steady streams throughout his 11 years. Keep searching, but don't forget to smell the roses along the way. You are so awesome. Your family is beautiful Lucy has so many cheerleaders by her side What a lucky gal!

Tiffany said...

You are so right Shawni.... us mothers are the only ones who are our childrens specialists! You know her better than any Doctor and you also have other children to compare her to. Hang in there.... you will find out through prayer what you need to do for her. It WILL come! I have been there and I know the only thing that ever comforts me during my frustrating Dr. visits is prayer. You are her advocate and we have to protect these kids! Good Luck, you are such an amazing mother and you will do whats best for little Lucy! She is a doll by the way!

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