Unveiling the Present

The long awaited appt. with this doctor finally came. I had Tesh on my lap, and he walked through the door, this older man from India, sat in front of me and one of the first things out of his mouth was, " What was her birth weight? " I answered, " 6lbs. 5oz." He then asked, " What is her weight now?" I answered, " 10lbs. 13oz." Shaking his head, he said with a serious tone, "She's gained 4 lbs. in 4 months. .... That is not good."
He went on to explain to me the diagnosis that we already knew about her head, and declared that she, indeed, needed surgery. BUT he can not touch her right now. He said, "I can't go into a baby like this. We call these babies "failure to thrive"." My face felt a little numb as I was trying to swallow that word, once again. That took me back, but he continued, "She needs surgery, but I can't and won't do it until she is well. Do you know WHY she is not gaining weight?"
My answers seemed so weak, but I gave him all that I knew. I found myself stumbling over my answers realizing what weak statements they were, " well....... they think that there might be a milk protein allergy.... she's on acid reflux med...." As I'm saying all these things, he's shaking his head, seemingly becoming more disappointed. He looked upset. He interrupted my ramblings about her health with, " WHO is THEY?" I answered him, " My Ped. and the GI specialist." Shakes his head again. As a father instructs his child, he said very seriously, " They need to get to the bottom of this. They need to figure out what is going on, why she won't gain adequate weight."
I went on saying that I've been feeling like they haven't been listening to me, and that I have theories, but they seem reluctant to try them out or test for them. He's shaking his head again, and then stands, " Do you know who I am? I am a neurologist. I am a professor of neurology. I've done....." and he went on about how many surgeries he's done, and how many of that were infants. and then concluded it with, " I am the one they all go to, I am it. THEY will listen to ME. I'm going to talk with these doctors, and make them get to the bottom of this. She needs surgery, but I can't do it with her in this state. They need to fix it, and if they can't, she will come here to get it done, and see the doctors here. " All I could say to that....... "ok"
I did ask him a couple questions about the actual surgery, but I almost felt I was getting off topic. It was a short-lived appt. and not what I was expecting.
I was expecting some productive consult about what surgery and when, and preparation, But what I got was a different form of productivity, which took me a little bit to see it that way.

He was the only Doctor that was standing up for little Tesh. He took the veil over my eyes, that the docs. back home put on me with words like" she's fine" " keep doing what you are doing", he lifted it up from my face.
This forced me to look at my daughter once more, and then I thought, " What am I doing??" He fueled the fire that, in my heart, was fading like embers. I was fighting back tears.

He felt around at Tesh's head, reassuring me of some flex with the metopic (forehead) suture, which made me feel better about the future for that issue. She started pouting at him, as he felt around explaining what was wrong about her head, and why. But then he instantly, turned into "Papa mode" and said to her with the sweetest voice, " Oh no, sweetie, I'm not talking about you. You are beautiful! It's ok, I'm going to fix this head of yours." It put a smile to my face, but I don't think Tesh was buying it. :)

He left shortly after that, with instructions to do whatever we have to do to get to the bottom of this, and that he'll see us back in 6 weeks, and see how she's doing then. April 9 is when we return for "take 2" and hopefully this mama can move this mountain with God's strength that He's so willing to bestow me with.

When we left that hospital, walking into the parking lot, packing everything back into the van, tears started slowly coming down from my eyes. I looked at sleeping little Tesh in her carseat, and my heart broke. We left there feeling very uneasy, not necessarily about the surgery, which there was, to some degree, disappointment. But we were trying to digest the seriousness of her present state, and that it's keeping her from a surgery that may save her life.

I was angry. I began wailing angry tears almost the whole car ride home. I was angry with the docs. back home, I was angry at myself for not pushing harder. I knew something was still wrong, and yet I sat in that feeling, becoming numb to what I ought to have done. My flame was burning now, and I was getting ready to forgive myself, and move onto what I needed to do now.
As I had moments of calmness, we watched the sunset, homeward bound. I was comforted by it's beauty, and remembered that as the sun sets, it will rise again. Of course, I went back and forth from crying, madness, and fighting depression, but as the sun, it still sets again, and rises again, so my life shall be on this earth.

Which is better....... to watch the sun rise or the sun set? They both look the same, but take on different passions. There is hope in sun set, because all the days trials are finally coming to a close, and there is rest. For there is joy in the sun rise, for a new day has been given and you are awake!

Isaiah 45:6 "That men may know from the rising to the setting of the sun that there is no one besides Me. I am the Lord, and there is no other. "

Curious Hospital

I'm writing two different posts about my day at the neurologist's appt. because there are distinctly two different emotions.

As we drove the hour and a half, it took to get to this neurosurgeon, I was sick with anxiety. I was glad and excited that it was finally here and that we were going to finally get some good answers. Then I was also sick with nerves, I was nervous about what he was going to tell us and what if I don't like him?
Josh and I talked the whole way there, I read a little to him out of our "car" book, "A Grief Observed"- CS Lewis. (good book)

We got to this massive hospital, parked, set Tesh up in the stroller and away we went to explore the place she is to have surgery. Within a fashion, we found our way to the clinic. We waited for a long while, and noticed that some were taking pagers out and then coming back when paged for their appt. so....... we jumped on the band wagon. We explored a little bit of the hospital. My nerves were getting a little easier, getting to know the place a little better. I began to imagine what it's going to be like being here, and eating in that cafeteria when our little girl is recovering.
I found that hospital very curious though. As we walked the halls, we ran into certain sitting areas and cafe's as we passed. There were medical personnel, patients, family/friends waiting with their loved ones. People were staring at Tesh, but in the same, I was looking at them. Both sides, seeking out "what is wrong with that person?" Some have been here for days, some for months. You could never really tell what their situation was.
We stopped at this cafe cause, of course, Josh HAD to get coffee. I was looking and watched all the people sitting at the tables. Some were talking and laughing like it was a complete oasis for them. Others, had very tired expressions on their faces, not speaking so much to the person sitting next to them. I saw this teenage girl, sitting alone, with her ipod in her ears, and her phone texting away. She had bags under her eyes. I wondered 'Is she here with a sibling? or a parent?'
While we were looking at books, our very loud pager went off. We looked at eachother and thought, this is it! Let's go! As we made our way back to the clinic, I saw a nurse pushing a wheelchair along with all these cords and tubes. In the chair was a another teenage girl, with her face engrossed in texting her friends. I had to smile inside. Nothing will stop a teen from being a teen. :)





Anyway, we sat for a few minutes and were finally called into the room. We sat in there for a while, so much so, we got bored and started taking a bunch of pictures.

Then he finally came in..... with a mission in his eyes.....

Persistent Ache

I still have good days and bad days when it comes to my sweet Sarah. And I also have good days and bad days when it comes to the reality of what Tesh is going through. Some days I feel confident, and sane, .... others...... I feel that reliable pain, that is always there, the most. Sometimes I sit and just think on the events of that horrid day for me, wonderful for her. I think on how she felt when I first found her, my thoughts of denial that 911 needed to be called. And then I switch to a future imagination of me setting Tesh on her big pre-op bed, giving her her last kiss, letting the nurses and doctors take her away from me. How do you let go? How do you be content with "that last touch"? I know the odds of her passing during surgery are slim to none, but then, again, so was Sarah's situation.
With Sarah, I had no choice in the matter. She was gone, and there was nothing I could do to bring her back. No good-byes, no preparation. But with Tesh's situation, I'm deciding, as her mother, that the doctors are right in that surgery is needed, and I am willingly preparing her to do so, having the ability to say, "I'll see you later". Although it will be hard to see her recovery unfold, at least she'll be alive. The instant I say that, I feel guilty. I do not wish suffering on my daughter, but I selfishly want her here, to stay. Should I be confident that her place is here because she has a purpose on Earth when I have a God that gives and takes away as He sees fit? She does indeed have a purpose, but is it to stay? is the question. Will I lose another child, all so people can see His glory and mercy? Which He knows that I will. Or will she, herself, be able to speak on her own behalf, with her own testimony that will give glory to the Most High? And that, only He can tell if she will. Which am I to stand on? Both ways, He will receive glory. And that is what I must be content with. I say this as my heart breaks, and I am holding back tears, just to get through writing this blog post.
Sometimes I feel like Job, wailing in a "woe is me" attitude. But then, I see where I am growing, or struggling more clearly when I'm under such pressure. I look back at where I was, and think, 'I've come so far' and then I look at the road ahead and think, 'I have so far to go still'.

Tesh is gaining weight. Praise God. The fatter she gets, the more she looks like her older sister Sarah. Thank you God for that little sweet face, but she still has Papa's ornery smile. :) Tesh is still sickly though, and I intend to get it checked out more evasively. Next wed. we see the neurosurgeon team at Iowa City. I have so many questions. and of course, life goes on....... Isaiah is acting out due to all the chaos in the home, Eve is coming to a close with potty training (thank you God again :) and my husband and I, simultaneously, pretty much missed Valentine's Day, not giving it much thought, but are enjoying the chocolates that the kids received. We are not big V-day people anyway. I'm a deep well for quality time, no V-day is going to suffice that. I adore him so much. I can't even think about anything happening to him. Not going there.
Anyway. Taxes are in, bills are due, debts to pay........... life goes on. And that is probably one of the hardest things to hear and to accept when you're in such trials, but the world does not care, as we've learned through our bank. Now I must go and clean house, making ready for the nurse that is to show up at my door in a few hours.

Thank you to all of you who have said to me in the last few weeks, "Keep taking it day by day." It's amazing how quickly I forget such sound advice.

Matthew 6:34 "Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."

In My Place

As I was talking with Amber, a woman at church, I was gazing into her tired eyes, and imagining what it would be like to be in her place. She has a baby boy that is a little older than Tesh who is very sick. As she and her husband desperately try to find answers, one can only pray that he continues to grow and become healthy one day. My heart broke as we talked about the similarities and the differences between our trials at hand. We are both relying on the faithful prayers that are sent up from the church body and that God's mercy finds us.

I know that I may sound crazy saying this, cause I've lost a baby to SIDS, and now I'm facing another baby needing head surgery, BUT it still gets to me when someone's quality of life is under pressure. This mother had to watch her baby being hooked up to so many tubes and wires, for weeks and weeks. There were times where they 'could not' hold him, for if they moved him, it could make something go wrong. This little baby is six months old, they've been doing this for 6 months! I just couldn't imagine having to do that. Here I am whining about my situation, thinking it's so detrimental that I nurse, and hunt down all these details with her feeding, when she IS gaining weight, and she IS getting healthier, and she WILL more than likely survive this surgery with flying colors, and I have this mother in front of me that is praying that she can just stay out of the hospital, bring her baby home for good, not have to have this oxygen tube with him at all times cause he can't do well without, and for him not to vomit everything that he eats.

It really put me in my place. It made me thank God that I don't have to do what she's doing right now. I was holding Tesh in my arms while we were talking and she couldn't even bring him there. My situation could be so much worse. I honestly can say that I do not know their struggle. I can relate, and understand the heart wrenching pain of losing a baby, and will understand what it's like going through head surgery with your baby, but I do not know their initial pain and struggle that they are faced with everyday until he is well.

I'm not trying to belittle my struggle, like it's nothing. But what I'm trying to say is that it really could be worse. Sometimes I get so wrapped up in my own world of grief that it's a blessing to run into great people like Amber. It puts me in my place. It helps me to stand where I am and thrive cause of who I am. It helps me to rise up, and do my job well, all for the glory of God.

"Lift your head high, child of the Most High God."


*if you'd like to follow Amber's story, their blog is www.theflinnfiles.blogspot.com