Float

“Still, what I want in my life is to be willing to be dazzled—to cast aside the weight of facts and maybe even to float a little above this difficult world. “ –Mary Oliver

Can you tell I have a book of Mary Oliver poetry on my nightstand? We had a good trip to Cincinnati. We felt brave and strong much of the time. There were even moments we could float a little. I will post tomorrow about our Dr. Crawford visit and next steps. We have said “yes” to surgery which creates a strange new tension wrapped up in relief. Thank you for praying!

Written Monday, June 21, 2010

Peace and Ativan

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.” ~ Unknown

If you know me well I have probably sent you a card with this quote or even a magnet or you have seen it posted on my old blog as a favorite or you’ve seen it on my own refrigerator. It speaks to me. All of us are in the midst of “noise, trouble or hard work” most of our lives. If we can’t find peace in the midst of those things we might survive, but there would be no rest or joy or hope.

When I think of the opposite of peace the word “crazy” comes to mind. We overuse this word when we speak to one another about people and circumstances and lots of other things. The word actually means to be of unsound mind, mad, insane, erratic . . . “ Over the past months I have had hours and even a few days when I slipped very close to the edge of this kind of crazy. It’s the most frightening thing I have ever experienced. I live right outside of a formal diagnoses of OCD anyways. The lack of control in my life right now in all areas is almost paralyzing. Thankfully there have been other events in my life up to this point that showed me the wisdom in seeking good counsel during times of crisis. I began this several months ago and was also referred to a medical doctor for my complete inability to shut my brain off and sleep and to help me deal with the panic attack feelings and growing depression. All of these things have also compounded the physical pain from my fibromyalgia and ongoing gynecological issues.

Here’s the thing–If you have called me or emailed me or read this blog I have most likely come across as pretty strong and coping generally as well as could be expected. I’m coming clean. The most complicated issue in the midst of Danica’s diagnosis and ongoing issues has been my faith. My inability to reconcile what’s happening with Danica with what I believe about God has made me a little nuts. And shouldn’t a prayer or a word of truth be my Ativan? Isn’t Jesus supposed to be my antidepressant? I have made very few allowances for our grief, anger and pain. I have been able to “fake” it on many levels even in my own mind and heart. This week as I recovered from a very frightening episode I had last Monday I began to talk to trusted people, and they all had the same response. IT’S NORMAL, AND IT’S OK! My husband held me as I cried, and he told me how relieved he was I finally showed some cracks. Long periods of extreme stress with little or no rest or recovery change your brain and it’s chemistry. This hasn’t changed who God is or even who I am fundamentally. It’s a scientific fact. I have always been a Mary. If you know about these sisters from the Bible and you know me you will agree. My entire life I have needed times of solitude, reading, writing, prayer, nature, art and poetry. I have needed to feed my spirit even more than my body. I become physically sick when this doesn’t happen for me. Essentially everything that charges my battery and makes me able to be a good wife, mother, friend and employee happens when I am away from people and activity. I have had no charge for so long, and my brain and my body and my spirit have short circuited. I don’t see a spiritual retreat in my near future or any kind of real reprieve but just admitting the “crazy” out loud is a good step for me.

This trip to Cincinnati tomorrow is our family vacation. It’s two days away, one of which is travel and a very stressful hospital visit and the other is a day at the zoo in what is forecasted to be 95 degree weather. We are as excited as if we were headed to the beach for a week. We have all needed to get out of this house. We have all needed to look forward to something. It may end up being 80% stress and only 20% fun but that’s more than we’ve been having for awhile, and we’ll take it!

Thank you for continuing to pray for us. I have felt a peace that passes understanding this week, and I know this has come from so many of you faithfully lifting us up. Danica has had a good week. I believe this helps us head into our difficult appointment tomorrow. It gives us a calmness as we ask our hard questions and listen to tough facts. We will continue to rest in His faithfulness, and I will take an Ativan when needed!

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33

Written Thursday, June 17th, 2010

Go with your Gut

Sometimes we get an instinct that overrides all other advice, even medical advice. Sometimes we know better than even doctors (who I have found are really guessing many times based on their limited experience and what we are articulating to them our own gut is saying to us anyways.) Danica wouldn’t be alive today if I hadn’t listened to my gut.

The first days of my pregnancy with her have been played over in my head thousands of times. Dan and I had been trying to get pregnant. We thought this was perfect timing since by the time the baby was born the children would be five years apart. My career in real estate marketing was established. Dan had just restarted his career in IT. It just seemed like nothing could go wrong. I bought a pregnancy test on my way to work at the Walgreens on Rockville Pike after I dropped Delaney at Montessori. I had my own private bathroom off my office at the condo community where I worked and the answer was obvious immediately. I knew it was early. I called Dan and told him and we planned to meet for lunch at our favorite diner in the Kentlands to hug and just celebrate a little. I had box seats at the Verizon Center for the circus that night and we were taking Delaney and Steve and Amy and their kids. Delaney still remembers me whispering to her during all the excitement, “There’s a baby in mommy’s tummy.” This was Wednesday, March 23, 2007.

On Friday, the 25th I began having horrible flu like symptoms. I hadn’t been sick in a long time, and it really frightened me how high my fever was and how ill I felt. I was planning to host a birthday party for my dear friend, Michelle, at a wine bar in DC the next day. As the night wore on it became apparent I could not go anywhere. I couldn’t even make it to the bathroom of our master I was so weak. I was also supposed to fly to Phoenix, AZ the next week for a week long business trip for some properties we had there. So much money had already been spent on tickets and so many meetings were set up because I would be there. I just HAD to get well. Sunday I began to bleed. I was devastated. I then realized I needed to stay in bed and get this flu out of my body. I wasn’t about to lose this baby. Lots of other things ruled my heart and life at this point. Beginning that Sunday EVERYTHING became replaced in my priorities. My singular focus was to stay pregnant. I was at a strange and disconnected point in my faith then, but I will tell you I began to pray and pray fervently. My doctor said on the phone if I was miscarrying it would happen regardless. Take it easy and come in and see him Monday. I cancelled my trip. On Monday they did an ultrasound to find a very large subchorionic bleed threatening my sac. I was very early on, maybe 4-5 weeks. They told me the chances of losing the pregnancy were 80% and to go home and rest. Wednesday morning I thought I could go in to the office for a little while. Dan drove me and as I began walking up the steps I began to gush blood. Dan drove me straight to Shady Grove. The ultrasound showed what I had feared. They told me I had miscarried and asked me to go over to the actual hospital and have a DNC.

Enter first gut reaction–No way. I was hysterical. I asked if I could wait a few days and just try to pass everything on my own and then check. My doctor agreed and prescribed Methergen pills to help aid in this process and sent me home. When I got home I took one Methergen pill. Later that day I passed what I thought was the baby and sac. Enter second gut reaction–don’t take any more of these pills. I stayed in bed the rest of the week mourning. I had some conference calls with the people in Arizona for work but something inside me had profoundly changed. Sunday I made up my mind I would not try to have another baby. I could never go through this again. I had my beautiful Delaney Jayne and a recommitted marriage, and I loved my work. I had so much to be thankful for. Monday morning I went by Dr. Apgar’s office to have a quick scan on my way to work. He wasn’t there but was at opening day for the Phillies so a strange doctor saw me for a minute and then sent me for the scan. The ultrasound tech stuck the wand in and as loud as could be we both heard it. I felt like I yelled, but I know it was a whispered cry, “WHAT IS THAT??? IS THAT A HEARTBEAT???” She ran to get someone else. After confirming the tiniest heartbeat she began to cry and said, “You have a miracle baby, Mrs. Snyder. There was no baby left last week.” (She was the same tech who had confirmed my miscarriage.) She ran to call Dr. Apgar at the game. No one had ever seen anything like it.

Two things I know for sure–If I had gone over to the hospital and had that DNC they would have scraped Danica out of my womb. If I had taken a second, third and fourth Methergen pill, the amount prescribed, I would have truly miscarried her. My gut reaction (Divine guidance) in both cases saved this precious life. Do you see why I don’t use the word “miracle” loosely EVER? Do you understand why Danica’s verses from Psalm 119:13-16 are so dear? “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

As we head to Cincinnati for Friday’s appointment about fusion please pray that my gut will be speaking clearly to me as we try to take in all the details of this dangerous surgery. All weekend I have been feeling we should decompress Danica’s brain soon and wait to fuse. I believe her neurological symptoms may be relieved like after the first decompression and this will buy us more time before having to fuse her. Several of the neurosurgeons agree. I know the guidance for the ultimate decision may come in the middle of a hard and painful night and not like a flash of light or a definitive opinion from a doctor I trust. Danica’s story is so remarkable from the very first weeks she was being formed inside me. The same weeks they tell us these malformations were taking place I was listening to my gut, and it saved her life. I need to hear that voice now and rest in it.

Written Monday, June 14th, 2010

This little light of mine

Do you know this song? I learned it at my Grandma’s church as a child. I have a repertoire of songs I have sung to the girls at night since they were babies, and this is always one of their favorites. I caught Danica singing this tonight in a puddle of sunshine as she played with her “Little People” house. Her favorite verse is “Don’t let Satan blow it out!!! I’m gonna’ let it shine.” She raises her little finger in the air and blows the candle out. We have had a week of darkness in many ways and today, after a long night of Danica waking up many times screaming, holding her right leg and thrashing around, there was a little light. It came through rays of ordinary grace and tonight Danica went to sleep without a struggle and our home has a peace we have longed for.

I have struggled to find any time or energy to update on the somewhat excrutiating details of the week. I also wonder if I share too much dark if people will turn away. There have been minutes and hours where there is only a smoldering of faith left in this house. Today I was reminded in several ways it’s okay to be real about Danica’s suffering and the effect it’s having on Dan, Delaney and I. It’s a hard thing for people to look at this kind of pain closely for a long period of time. It’s an intimate thing to sit with us and not be able to fix this hurt but still stay. For all of you who continue to do this we thank you.

Danica had her recommended Klippel-Feil scans of her major organs on Monday. It was perhaps one of the hardest hospital days she and I have gone through. We received the reports that all her major organs look healthy and there is no deformity apparent. We spent several hours trying to get a good scan of her gynecological organs and found that trying to keep a two year old’s bladder full enough to view these underdeveloped organs is almost impossible. After forcing fluids and putting her on and off that table over and over again I made a mommy call, and we did not finish that scan, but I feel very confident this is something we can do at a later date.

Danica’s nighttime symptoms continue to worsen. We have stayed faithful with the collar during the day. We have had numerous conversations with Dr. Crone, neurosurgeon at Cincinnati Children’s, Dr. Fuchs, neurosurgeon at Duke and our dear Dr. Cohen, Danica’s “primary” neurosurgeon at Rainbow Babies here in Cleveland. I also finally received a call back from Dr. Menezes’ attending, Dr. Ahmed, who saw us at length during our Iowa visit. They all agree the suffering Danica is in is not “livable.” Dr. Fuchs and Dr. Cohen agree performing a further brain decompression now may give Danica the relief she needs neurologically to get her further in her growth before we would fuse her. They are not convinced her instability would be dramtically increased as a result of doing this surgery first and separate from the fusion. Dr. Cohen, in particular, stressed he still defers to Dr. Menezes because of his greater experience with this kind of cranio-cervical instability. Lastly he reminded me that my mommy gut has driven me from the very beginning and Danica’s case is rare enough with the combination of the Chiari and the assimilation that no one can really be sure what the right decision is and each one comes with it’s own set of risks. At the end of the day Dan and I have to make this call.

Dr. Crone in Cincinnati believes we need to decompress and fuse now. One thing we haven’t really talked about at length with anyone is the actual mechanics of fusion. This part of a tandem surgery would be performed by an orthopedic surgeon not a neurosurgeon. We have an appointment in Cincinnati next Friday, the 18th, with Dr. Alvin Crawford, the orthopedic surgeon there, to get all our questions out on the table and try to understand this complicated procedure. We believe this is a foundation needed regardless of if we decide to fuse now or later and who we decide to choose to actually perform the surgery. We plan to go as a family this time, stay two nights and take the girls to the Cincinnati zoo as a kind of mini vacation. Delaney has particularly expressed the need to be included in some of these trips. Although the driving and hospital visit will be difficult we are all looking forward to leaving our house and the pressures we feel here and being together.

Our frustrations with Dr. Menzes office are simply the inability to really access him in any meaningful way since our lengthy visit several weeks ago. I have talked to his PA several times about Danica’s worsening issues, and she has urged me to stay the course a little longer. Dr. Ahmed was more concerned today, but he needed to discuss with Dr. Menezes who is out of town until Monday evening.

When I watched Danica last night I was so afraid. There is definitely something hurting her when she lies down. She says her eyes are “glittery” and her leg is “fuzzy.” Please continue to pray for her protection during the day and particularly at night. Please pray we will find some kind of guidance in the next week so we can confidently move forward with a decision to help give her some relief. We need daily strength and little lights to help us continue to find God in the dark.

Risks and benefits

We moved Danica's toddler bed out of her room tonight and put a twin mattress right on the floor. She has continued to have very "restless" legs and body at night. Really, it's more like thrashing around. I have bruises all over me from sleeping with her in our bed. We let her stay with my mom last night so Dan and I could try to get some rest (which unfortunately didn't happen due to our power going off three times). My mom said she was like a pinwheel with her body moving around in circles through the night.

As I began tucking her in, and she read me "Goodnight Moon" almost word for word, I thought about how I would post our sweet moment and just a few basic updates. More than an hour later I am exhausted from trying to get her to sleep. She had no nap today and finally as her little body settled down I could feel her muscles twitching when I rested my hand on her back. We are so tired from trying to keep her safe. We are so weary of telling her "no" and yelling that she can't do basic things like crawling around her Thomas track with her trains and holding her neck in the looking up position (it's one of the worst for her). We feel so mean for constantly scolding Laney for beginning to play with Danica in any active way because she may get hurt.

It's been just over a week since Iowa. Danica has worn her collar constantly except for sleeping and bathing. The first day home I had taken it off for her to eat, and she slipped off the bench and hit her chin really hard, so I realized she really should not be without it at all knowing how unstable she is. This week we have circled back with all four neurosurgeons who have consulted on her case. Without going into the details of their opinions here tonight I can tell you bottom line is Dan and I have to weigh the risks and benefits of having both operations immediately. Dr. Crone from Cincinnati, the doctor who found the bone issues on the 3D CT, said Friday, "This situation is not practical or livable. You have to take the risk to give her the best chance at some kind of childhood." I ran back to Dr. Ben Carson's book, "Take the Risk." The entire book addresses medical, spiritual and faith based and practical life situations with four questions he always asks himself when facing an important decision. In our situation the questions are:

1. What's the BEST thing that can happen if we operate?
2. What's the WORST thing that can happen if we do operate?
3. What's the BEST thing that can happen if we don't operate?
4. What's the WORST thing that can happen if we don't operate?

The next steps for us begin with all the Dr. Menezes recommended Klippel-Feil scans tomorrow at Akron Children's hospital. I am trusting they will all be clear. Much of this entire journey has been my mother gut and Divine leading. Because of my high risk pregnancy beginning in week 5 and my kidney being blocked from week 19 on, our little Danica was followed by maternal-fetal specialists continuously and had more ultrasounds than I can count. I firmly believe we would have noticed something with her major organs. I am glad we are doing these scans to rule out any other genectic deformities, but I am hopeful tomorrow will be uneventful with news and merely a formality.

Dr. Crone wants us to come back to Cincinnati and meet with Dr. Alvin Crawford, the orthopedic surgeon at Cincinnati Children's. He would explain to Dan and I in detail the process of Danica's fusion. He would explain the instrumentation used, bone grafting, etc. In all the talks we have had about her need for fusion no one has explained the details to us. We understand the brain decompression surgery for her Chiari, basically a further decompression that would not involve bone removal this time but coagulating (removing) the herniated part of her brain, opening the dura and putting in a dural graft. This surgery would be done at the same time by the chosen neurosurgeon as the fusion. We will get a referral call from Dr. Crawford's office this week to make an appointment.

We have huge overwhelming deicisions to make. I also believe we do not have a lot of time. Something in the same mother gut that has pushed me forward these long 14 months tells me if we do not make a decision soon something emergent will happen and we won't get to pick our surgeon. Please keep praying. Please pray that we will be very sure and have the courage needed to just MOVE.

I cannot leave tonight without again thanking all of you who are loving us. We have had so many amazing expressions of care to our family in the last months, and I can tell you some days they are like the literal hands of God reaching out to touch us. I have posted about my amazing sister Heather and her "Cookies for a Cause." For well over two years I have been blessed to work from home doing database work running lists for political and charitable direct mail. The ladies of RMLC who I interact with on a daily basis ordered cookies to deliver to all their clients this past week. Their support has been unfailing since all this began. By taking two days out of their schedule to make client visits and hand deliver these cookies and tell Danica's story they not only help spread awareness about Chiari and increase support for our family but are an amazing example of what their business is about. Philanthropy of any kind always comes down to real people. This is the best "health care plan." My sister's tireless love, the love of these amazing women, YOUR LOVE has changed us.

Dr. Carson writes in the aforementioned book, "Faith by definition is a risk." I have moments and even hours where I feel hints of peace and know my faith is secure. Admittedly, the rest of the time I am a wreck. The most wonderful thing about the foundation I stand on through all this is I cannot be moved even when I am doubting and certainly not feeling what I should. He is unchanging and nothing I say or do alters His care for me. I am safe. Danica is safe. Delaney is safe. Dan is safe. We are resting in the shadow of the Almighty God. No one can pluck us from His hand. Carson continues to write, "We all have the choice. But only when someone takes the risk of faith can he or she begin to experience the best consequence and the best rationale I know for belief in God. That's the privilege of a personal relationship with the Creator of the universe, who wants to offer His widsom and guidance to help us deal with all the other risks we face in our dangerous world." Amazing love and unmerited grace are our gifts tonight. Sleep or no sleep we will rest in these truths!

The ideas of God

"So every day
So every day
I was surrounded by the beautiful crying forth
of the ideas of God,
one of which was you."
-Mary Oliver

Please pray for our marriage

We had a really hard Sunday and Monday. We are back to a "regular" day for our family, and it's made even harder by keeping Danica's collar on and keeping her generally safe. There are a dozen phone calls I've made this morning which offer more questions than answers in many cases. We are stressed about why her symptoms are worse since we've returned, and she's been wearing the collar and how to respond to that. I will take Danica to her primary doctor this afternoon to set up all the scans and tests she needs for the Klippel-Feil diagnosis.

The statistics show that 40-50% of all marriages fail and this rate rises to 80% when there is a child with chronic health issues or special needs. Here's the additional stresses Dan and I are under right now:

• The financial burdens of medical bills and therapies not covered by insurance.
• The stress of battling with insurance companies or state funding programs, and navigating the maze of paperwork to get coverage.
• The loss of income due to one (or sometimes both) parent needing to scale back working in order to care for the child OR the astronomical expense of hiring specialized caretakers. (I am desperately needing to quit my job or take a leave. Please pray about how I can continue to manage everything I am doing and my own physical health.)
• Processing the overwhelming grief and sadness and coming to grips with the profound changes in your own life plans when faced with the long-term care of a disabled child.
• Watching your spouse process the grief, sadness and acceptance of your new life – his/her process will likely be entirely different from yours!
• The different points-of-view you and your spouse may share on exactly the nature of your child’s disabilities and the intervention steps to take.
• The opinions and input of extended family members – what your parents, in-laws, siblings and others think.
• Loss of friendships OR at a minimum, loss of time and energy to maintain outside friendships.
• Worries about your long-term future as a couple. Parenting disabled children changes your retirement plans, your ability to take vacations or explore enrichment activities.
• Finding appropriate childcare to be able to focus on your marriage by spending time together.

Won't you please pray that Dan and I will find comfort and strength in one another and our marriage and family will withstand this awful pressure we are under?