Librarian and so many others

The other day I was at the local library. I went about my business collecting a dozen books to read with my kiddos. As I'm checking my books out Katie Joy is sitting in the stroller making all sorts of babbling noises. A librarian comes over and begins to talk to her. She attempts to tickle Katie's legs and says, "Oh I just love your cute shoes." Katie has Sure Step shoes that fit over her AFOs. Currently we are waiting for our orthotist appointment to get them adjusting so to keep her toes covered we just have shoes on her. Because Katie didn't react to being tickled the librarian looks up at me and says, "She's not very ticklish huh?" I smiled and said, "No she's not but really she can't feel that. She's paralyzed from her knees down. She has Spina Bifida." I was polite and pleasant. The librarian looks at me with a pity and surprised look and asks about it. I explain a bit, mostly sharing what happened when she was born. As I tell the story the librarian begins to tear up. After we finish our small conversation she gives me an encouraging pat on my shoulder as we part ways.

I don't know what to think about these encounters. It happens more often than I expected. I dislike the pity looks. The looks that say, "oh you poor little thing." However, I love that I can share her story. I hate that I make people cry. I love that in the end I get to share perspective and joy. Sometimes I feel like I need a therapist. I need to be able to tell one person the entire story start to finish without them crying. I understand why people cry. It's disturbing to think you can have a nearly perfect pregnancy, a few problems but nothing too terrible, and then within just a few hours everything changes. It's hard to look at such a little girl and think about her having brain surgery.... twice. It's shocking to meet someone paralyzed who is only 1 year old.

At a local indoor playground a man sees Katie playing on the floor with her leg twisted. Oh, my incredible flexi-baby. It completely freaked him out. It made me giggle a bit. I suppose this is improvement. I used to cry. You never want your child to be paralyzed. Somehow though, there are moments when it can be funny.

Faith Challenges July 1

Up at  midnight watching the clock turn 1:30 with a very cranky kid challenges everything in you. I don't deal with sleep deprivation well, at all. My prayers have been desperate, crying, sobbing, snotty begging prayers asking God to please PLEASE have mercy on my family and I's bodies and minds. Katie has been sleeping so good until 2 nights ago. We did change routine so maybe it's that, but at 2 am when I changed her diaper I knew her stomach was hurting. A common Spina Bifida problem deals with gastro stuff and bladder stuff. I can deal with her paralysis and the things that go with it but right now the most confusing is to know how to help her have good gut health. In the middle of the night when sobbing crying prayers happen that's when you decide how important and where is your faith. 

I love God, but I do not understand His ways. Why I'm up for hours with a screaming 1 year old.... I don't know. Is He still good? Yes. I heard on the radio a man saying he preached about Jonah not knowing if he was reaching a single person then he had a unplanned meeting where he preached on repentance. He thought maybe 15 or 20 people would come... over 500 came and many responded well to his message. THIS tells me that at the heart of listening to the word of God we are reminded we are sinners, saved by grace. No, I'm not saying "oh woe is me I'm so horrible there's no hope." I AM saying. I am not perfect. I can and have been ugly and disgusting. I am repentant and don't like to be that person. I'm grateful that even though I have moments they are getting a lot less than when I was in my early 20s. It is because of Jesus that bridged our way to God that allows us to have obedience that means reconciliation with our Creator. I'm so grateful His mercies are new every morning.

I sit now with while my husband sings and my daughters dance to "I Won't Back Down." Ada has really loved this song for a long time now. 

"In a world that keeps on pushing me around. I won't back down. I will stand my ground."

"There aint no easy way out."

Spina Bifida is a huge part of our life. There's no way around it. But I will teach my daughter to not back down. She will be strong. Strong doesn't mean a game face every day. Strong means crying when it's appropriate, being vulnerable, letting others know you hurt but have hope. Strong is choosing to let others have their hateful words but love them anyways. It means walking away when others have hurt you too much. It means standing up when it hurts. Strong means dancing even if you'll look crazy. It means taking Spina Bifida and showing others what to be grateful for. It means having joy when others think pity is easier. She will not be weak. No... She isn't weak.

Her birth has strengthened our family and defined the kind of people we will be in this world. Maybe you've had a defining moment in your life. A birth of a child, a traumatic moment, a death, a choice, something that made you question everything you are. What have you cultivated from that moment? Are you choosing the strength side or have you given up? 

I'm not giving up. You shouldn't either.

Broken Vessel- April 24, 2014

As a child my grandmother created an art exhibit at church. I went to a Presbyterian church with hardly any kids. I made a decision to leave and when I did I thought I wasn't missed or cared about (decades later I found out that wasn't true). She had several drawings of pots. It was entitled He is the potter, we are the clay. I remember walking around the various pictures and stopping at one that was broken witha broken lid. It wasn't a pretty color or nice looking even. I somehow identified with it. I felt unimportant, ugly and broken. I felt useless and I remember thinking... God can't use that. However.... now I know, He is the potter and He can fix anything.

While driving to work this morning a song on the radio brought me back to the moment I was wheeled into the NICU. I sobbed all the way to work. I have been very sleep deprived lately. I've also had some major projects at home and work, so I am a little overwhelmed. Usually those two things makes an emotional me anyway. I cleaned myself up and got right to work as soon as I walked in. I was ripping open boxes and saw a book with a pot on it. I again remembered that art exhibit. I really am a broken pot.

I am imperfect and sometimes downright ugly. I had to ask for forgiveness this week multiple times. I wont lie I am having trouble moving on from the trauma of Katie's birth. It is crazy to me I nearly lost my daughter who i thought was a boy. The exhaustion of such an emotional low mixed with having a baby was so hard. Sometimes I still cry about it as I remember the coversation with our dr, the or lights, the feeling of unknown and the shock of instantly becoming a parent of a special needs child. The phone calls to drs, orthotists, insurance this and that are also daily reminders my boy is actually a girl with a split spine. Dont get me wrong I'm not super depressed thinking our situation is so bad but I cant seem to shake off the trauma of the beginning.

I am a tired mommy. I'm not afraid to admit that while I attempt to do it all I just can't. However, I can make it through the day and do everything I can to do my best at every task and be as present as possible in every moment. Even broken pots can hold drops of water. I don't need to be overflowing every day, a drop is all you really need. A drop of joy, peace, patient, righteousness, goodness and self control. Maybe certain drops dry up in certain moments. In that moment I ask God to rain His holy spirit because I can't do it alone. I think this may be my broken pot season. I can'y hold as much, I can'y help as much. I'm not the most beautiful or the best accesory but I know the potter is throwing the clay again, lighting the kiln and ready to remold me.

Being Grateful in the Moment- April 8, 2014

Emotionally the past week has been hard. I've been watching friend after friend have healthy babies, babies become toddlers by beginning to walk and young ones Katie's age not just walk but run.

I will never intentionally make someone feel bad because their child is developing on track and "normally". I know every child has their own stages of development, but I know this kid would be walking if her spine had developed correctly. Her go go just wants to get up and move. Jeff gets what I meant at least. I will never say to a friend, "at least your child can walk." That's not fair to anyone.

Katie is about to turn one. One year. Even saying that makes me tear up. I know she will likely walk and it will likely be around 2. I know we'll have an enormous HUGE party when it happens. I am grateful that Ada is developing and growing "normally" and that the other children around mine are growing leaps and bounds. It doesn't stop the pain that this isn't what I wanted for my Katie Joy. No mother wants 4 surgeries before 1 year old. No mother wants constant ER watches, questions and trips. No mother wants to watch the pain of their child learning to crawl when it's so hard they become exhausted. BUT

Every mother wants a happy baby. Every mother wants an adorable beautiful daughter that makes strangers stop. Every mother wants their daughters to have a best friend sisterly relationship. Every mother wants a dad so in love with his children he doesn't see the disability first. Every mother wants a snuggly baby that smiles when everything else seems to fall apart. 

I don't have to live with Spina Bifida in my child I GET TO love my daughter whose strength will move mountains and change the world. How lucky and blessed am I that I get to be the parent of someone who will speak and amaze people. How amazing is it that I get to teach Ada that loving and leading her sister is a huge calling she gets to have? I watch Ada and daily I am grateful for her health, her ability to walk, run, be potty trained and even the fact that she can feel when I tickle her toes.

While I will have emotional days and cry and it will be hard. I will deal with impossible people who don't get it and don't want to. I will disagree with medical professionals. I will second guess whether or not my child is ok. I will get scared as she walks and falls. I will get frustrated with the problems that come with SB. I will not give up. I choose to be grateful in the moment of what seems impossible. I choose gratitude over depression. Living a life of gratitude is not without problems, but it does mean I have hope because of the Christ in me and the God that knit my child together in my womb. 

Growths and Changes- Feb 10, 2014

I am grateful for the abilty to have a retreat. In speaking with a friend we decided we needed to get away so we can get the junk out of us. I needed to let go of a lot of stuff I had no business holding onto. 

Revelations/Realizations

God is big enough

God IS enough

His Grace is sufficient

HUGE reminder

I am my beloved's and my beloved is mine.

I was reminded this weekend that it isn't about how hard I try to be good. The large tasks ahead of me can be done because God is my provider. I will do my part and work towards the goal but I'm going to trust God too. Also sometimes it takes going away for a day to fall back in love with the people so close to you. When I woke up I knew I'd be leaving earlier than expected. For one I have been fighting this gross infection that had gotten too painful to not go to the dr.

 But along with that I fell back in love with my family. What a good husband I have. Not all parts of marriage are pretty. Sometimes I'm an ugly wife. God restored my heart to really fall in love with my husband again. He is pretty cute, lol.

We got to walk in the Hearts of Gold walk a week ago. What an amazing experience. I got to thank some nurses and other staff from Memorial. Our team raised nearly 1500. WOW. What generous people in our life. Thank you if you gave time or money! Katie was taught to clap that day! Thank you Uncle Tony!

Katie's development now

army crawling- not super consistent yet

intentional rolling

clapping

babbling- dada, ada. mama, baba, gaga, zzzz, didi ; Ada might be her first word

waving

laughing

eating baby food vegetables

chewing puffs wo throwing up

Ada's growth

vocabulary rapidly growing

asking critical thinking questions about nature

independant grooming/hygiene 

pretending using role play voices

problem solving conflicts with friends or tough situations

learning to cut

Letters sounds and names nearly all learned

Numbers 1-10, working on 11-20

Life is good but... Jan 18, 2014

I remember living at home with my parents and thinking, "Yes, I have food, shelter and clothes. I am not neglected, I have what I need, but I am not  happy." I would complain about money, weather, the people around me. Yadda yadda yadda. I find myself less like that as an adult.

Life is good.... but. That doesn't mean we don't have things that are hard. Being positive doesn't mean being fake and pretending nothing bothers you. I love my family but some moments are just plain hard. It's become a daily thing for me to surrender Katie's development to God. He is in charge of how she will be. It still doesn't stop me from crying when I know she wants to crawl and can't.

I had a breaking moment last night. She was crying and wouldn't calm down. After a few minutes I began to wonder if I needed to be watching for shunt malfunction signs. I was sleep deprived (not having gotten more than 5 hrs per night for 4 nights in a row), hungry and worn out. I began to sob. I don't want her to go through that much pain again. I don't want brain surgery again. I don't want an emergency situation. I felt like a child about to throw a tantrum, "NOOOO, I dooon't wanna!"

Thankfully after Jeff prayed I saw a change. She calmed, quieted and did her normal routine of fighting bed time as usual. I tucked Ada in (who has been saying non stop sweet things), layed down for a minute and promptly fell asleep. I woke up feeling grateful not to be in the ER. I got 10 hours of sleep! My house may be a mess, dinner may have been left out, my coat may not be hung up, but golly gee I am rested!

I am asking God to help me stay positive and not go down the depression spiral. I am learning to grieve the moment and move on. I need to cry and be sad my Katie Joy has a different road, and then snap into the bigger reality.... she is stronger than any other person I have ever met. Or at least she will be. As I do my best to be a good leader and role model for her I think in the end I will look up to her. I also think she'll end up looking to Ada a lot too. I've never seen sisters love each other so much. I am grateful Ada adores her baby sister.

ER Trip 2- Dec 29, 2013

Shunt or not shunt? That is the question.

Our whole house has been really sick the last week. First a stomach virus and now a cold plus congestion. Well, we can get over it, but Katie? It's a constant question... is she just sick or are problems happening with her shunt. Yesterday Katie started to look real sick. We talked and decided to try to let her sleep it out. With a fever of 102 most of the day and through the night we found ourselves still questioning. She's the most confusing sick kid ever. Well, she developed definite pink eye through the night. Still with a 102 fever this morning we decided to call our doctor..... seriously, we are so grateful for him. Because of the kind of child Katie is and because of the kind of healthcare she has he sent us to the ER. 

In the ER for several hours we learn she has another middle ear infection and for sure pink eye. No CT scan today. She is keeping food down and according to the ER dr. not "toxic" looking yet. We see our doctor first thing tomorrow. 

The good news... the VERY good news.... no one seems to badly concerned that is her shunt.

We got an antibiotic and stuff for her eye.

We are on the mend.

And through it all Katie smiles, through tears and uncomfortable grunts and cries, she still can smile sometimes.

The Week we dread- Nov 3, 2013

As a parent of a child with a shunt what you fear the most is the shunt malfunctioning because it is surgery all over again. And not just any surgery it is brain surgery. This is the story of Katie's first and hopefully last shunt revision.

Monday, as was already written earlier we went to Memorial's ER because she threw up. This is a sign of a malfunction so we knew it was a big deal. The CT scan showed no changes except a very bad middle ear infection in both ears. She also seemed to have the start of a urinary tract infection. They admitted Katie, thank God, because Wednesday we thought she was going to be fine and we would go home. By Thursday morning she had regressed and began throwing up again. ALSO her eyes began to cross.

Up until this point our experience at Memorial was amazing. All the nurses were really kind and very sensitive to the situation. Student nurses were amazed at God's work in Katie's movements and our attitude, which only comes from Christ. I got to teach several nurses how to do Katie's catheter and share what amazing things God has done in our life. We were tired, and really missing being together as a family.

I told the doctor her eyes were looking strange and he said he was going to call Dr. Wheet immediately. Jeff and Ada were planning on being in Jake's wedding so I took Ada home to get our stuff for the wedding. I had a feeling something was wrong so we went fast and went straight back to the hospital. As I was walking back in Bonnie was also walking in. Bonnie is a friend we met in the hospital when Katie was in the NICU. She is the parent care coordinator. God placed her in our path and took Ada to her office to play for a bit. As I got up stairs to the PICU many people entered the room quickly. The PICU doctor came in to let us know that her CT scan showed her fluid building up again. Her shunt was malfunctioning. These are words we didn't want to her at all. They explained they were talking with the transport team about taking her in a helicopter. Dr. Wheet came in as they tapped her shunt and asked if I was ok. For the first time I told him no. I was scared. I knew what was going to happen. My 6th month old baby girl was going to have brain surgery.... again.

As they made decisions about transport I did Ada's hair for the wedding and Jeff and I decided he needed to stay for his brother and sister in law. I knew I couldn't stay, my little girl needed me. The hardest thing ever... leaving my husband while I rode alone in an ambulance with Katie 3 hours away. They chose ambulance due to the weather. Bonnie stayed with us as long as she could in the PICU at Memorial, the social worker comforted me as I let it sink it... brain surgery... again.

The transport team was just the right people. I rode and cried in the ambulance as my heart broke for the pain my girl must be in. The cranial pressure was increasing by the minute, her lethargy and cry told me she wasn't ok. Upon arrival a few ridiculous moments happened (they took us to the wrong ER room first, the paperwork was "lost" then magically appeared later, the er doctor didn't know what AFOs were and so on) then :::hallelujah chorus:::: I met our new neurosurgeon. An amazing woman who had details, information, and was to the point. Much like ours here in town. She said she wanted to revise the shunt and took a guess at what she thought it could be. Thankfully it was something more mild. The ventricular catheter was being blocked up. She simply replaced it. The surgery only took about 2 hours.  Within 4-5 hours Katie was babbling and playing, the first time in a week. 

So many details God worked out, so many rough moments. Whether it's brain surgery or discharge God is still God and no matter what He loves his people. I prayed and cried and prayed and cried.

What kept me going? God made me a champion through Christ.... "I am champion, you're gonna hear me roar, louder louder than a lion."

ER Trip 1 Oct 29, 2013

For the average child throwing up a large amount once may possibly warrent a phone call to the doctor. For a Spina Bifida child it is a call to the Neurosurgeon and a trip to the ER. Sometimes life feels like one big emergency...

Katie threw up yesterday. I hate watching my kids go through that to begin with but with her the thought crosses my mind immediately; is her shunt malfunctioning? Will we need a complete revision? Is it brain surgery all over again? Called Dr. Yount's office who had us go to the ER for a CT scan. After hours of waiting we find out it is not her shunt :::phew::: However she has a lot of fluid in both ears, abnormal for a child her age. She also threw up again in the ER. After another hour they decide to keep her in the Pediatric ICU (PICU). I guess Katie wants to meet the entire Memorial Children's Hospital staff; NICU and PICU :)

We stayed over night and at this point she doesn't seem to be fighting an infection, which is not a good sign. She is getting antibiotics and is sleeping a lot. She is not herself. She's really unhappy, her eyes are red and she looks like she feels miserable... a mother's heart break. Dr. Wheet should be coming today to look at her and the staff here is amazing. It's hard to watch your child go through this. She isn't keeping any food down at all. I'm nervous to feed her again. 

Please pray we get rest somehow and that wisdom would be given to the doctors about what treatment to use. Pray for Ada that she takes naps today and adjusts well to not having us home today. Pray that the details are worked out for our very busy week. Pray for comfort for Katie.

_shunt malfunctioned, rushed to Riley, home the next day.

6 Months old! Oct 16, 2013

Katie Joy is 6 months! Wow. She is growing at a nice average rate, not too big and not too small. Her head is slightly asymetrical and is needing to be watched. We will be going back to the doctor next month to check on it. Her feet seem to be healing or at least getting a bit better and not getting a ton worse. I think I'm attributing this to a combination of prayer and her growth. 

Next week we are going to Payton Manning Children's Hospital in Indy to meet with the Orthopedist, Dr. Bellflower. He travels to South Bend once and month and we will be able to see him here! 

Katie seems to be developing well, still no rolling over from back to front though. She is showing signs that army crawling is in the near future! We talked with the doctor about her latex caution and we don't necessarily need to be avoiding having balloons but she should avoid holding them. I think for her birthday we'll avoid having any latex balloons and just have mylars. If anyone has experience with latex allergy let me know!

Please be praying for our trip to Indy, adjustment in changes to our schedule and my own healing. In talking with my doctor about some pain I have been having from my c section. There is a possibility if the pain gets worse that I am developing adhensions. If adhesions are occuring then surgery will be required. If surgery happens then there is a large possibility I will not be able to have any more children. Please pray the pain does not worsen.

Ada is enjoying ballet a lot. Her teacher says that she is "on the ball" and being a big help. She is remembering her positions and listening during class. I really love watching her grow and learn something so disciplined. 

2nd Opinions and Ballet-Sept 27, 2013

What little girl's dream isn't to dance gracefully and beautifully across the stage for all to oooh and ahhh? I gave Ada choices of swimming or ballet. She chose ballet. She is adorable in her little leotard. I see this as something for her future; graceful, disciplined, poised. I want to teach her the art of being a lady. While I do feel like I have failed on some level I slowly am inching my way there. While other moms complain of the harshness of the teacher (who wasn't really that harsh) I see it as an opportunity for my daughter to learn what it means to learn a craft and if she so desires to master the art of the craft. I had a difficult and often mean clarinet teacher. I would cry on the days he smack  my fingers with his baton. But by George I was the best dang clarinet player I could possibly be at that point in my life. I saw a goal and I grabbed it. With his leading I became one of the few my age who got paid to play. I don't want my daughters to be wimps and never truly learn anything. I want them to know with enough stick-to-it-ness they can acheive and acheive well with Christ in their hearts.

On October 22nd we are leaving again to Indianapolis. This time to get a second opinion on Katie's Ponseti shoes from an orthopedist at the Peyton Manning Hospital (a branch of St. Vincent). I am excited to hear what this doctor says. If we like this experience well enough we are considering switching all of our care to PM. While Riley seems to give good care for many things but the Spina Bifida clinic is the most disorganized medical establishment I have seen. I feel like a lot of my life surrounds these clinics, doctors, nurses, etc. It is tiring, but in the end I want to do the best for my child that I possibly can. I want Katie to know you don't have to accept poor treatment in life. That it's okay and many times a good thing not to fight with it but instead to choose a different path than the people who treat you so badly. I want Katie to see there are options and not feel stuck because one doctor says one thing. I want her to be able to advocate for herself with the support of us. Mostly I want her to have a voice. I still pray daily that she will know God. Without Christ we would be a wreck of a family. We have our issues, our bumps and our hiccups, but in the end because of Jesus we are together.

My challenge and charge of the century.... Do not accept the scum people hand you. If someone threw up in a bucket and wanted you to carry it around everywhere you go would you do it? No! So why carry around the nasty words and attitudes they threw up and want you to carry?

Exhaustion Sept 18, 2013

Today was a hard day. I took Katie Joy's shoes off to let her feet breathe and her ankles on the top are bruised. So, I called Riley, something I dread now. They said we need to go there. I asked if we could go to Midwest Orthotics (an in town ortho clinic) and the woman was just so rude to me. She told me I should have gone there at the beginning when I chose where I was going; which I had no choice in the matter, we were told we -had- to go to Riley. After a circular conversation where the woman acted as if I knew nothing and she could do nothing for me I went ahead a called the in town ortho clinic in which I made an appointment (TA DAH!) Then I had to make more phone calls about money and insurance and billing, yadda yadda yadda, answering phone calls from Riley about how ridiculously difficult everything is, yadda yadda yadda. Ugh, I am not one to call people ignorant very often but man alive I could only handle so many bad attitudes and rudeness today.

Geez to mothers who have been doing this longer than me and are doing it along side me I commend you. It is so hard not to completely lose it on people sometimes and even harder to get things done without being semi rude, or at least being firm. For one woman I told her, "Look, my daughter has Spina Bifida. That is enough for me to handle. I don't need to be talked to like this. I don't know how everything works which is why I am calling, please don't treat me as if I'm stupid." She politely apologized and gave me answers calmly. I'm glad it went that way and I am grateful she changed how she was talking to me.

That is done, appointment tomorrow to look at her shoes and hopefully get some answers.

My dad was recently diagnosed with AFIB it weighs on me that, that much more life is short. I'm realizing I don't have time to deal with others' putting crud on me and wallowing in the crud they say I'm in. I want to stay away from drama and live my life the best way I can by serving God and loving people. I don't want to waste my time on dumb things. I need to be intentional about the way I take care of me and my family and constantly be praying about where and what God wants me to be doing.

For now I will enjoy what's in front of me. I signed Ada up for ballet, I am spending time with uplifting people and friends. I am learning about the Bible. I am chershing the love of my husband and reminding myself it is an example of Christ loving the church. I will attempt to take those things that have been said to me that are so hurtful and put them out, where they belong. My time is not worth even looking at the horrible negativity some people want for me and my family. My time is better spent enjoying the here and now. 

And with my exhaustion I read...

Isaiah 40: 28 Do you not know?    Have you not heard?The Lord is the everlasting God,    the Creator of the ends of the earth.He will not grow tired or weary,    and his understanding no one can fathom.29 He gives strength to the weary    and increases the power of the weak.30 Even youths grow tired and weary,    and young men stumble and fall;31 but those who hope in the Lord    will renew their strength.They will soar on wings like eagles;    they will run and not grow weary,    they will walk and not be faint.

New Daily Normal- Sept 15, 2013

My life isn't what I ever thought it would be. I had dreamed of living in Florida and traveling around the world on my summer breaks as I taught an adorable class of 4th graders doing amazingly creative projects while I'm on my way to winning teacher of the year. Wow... nowhere in there did I think the status quo would be it. Does it depress me? Occasionally yes. I'd be lying if I said my dreams are not what they used to be. Maybe it's just time for a new dream.... 

My dream isn't to live in Florida anymore (although I did love it while we were there and I do hope to go back to live again someday). My dream is to live where God sends all 4 of us. My dream isn't to teach but instead to constantly learn. My dream isn't to do cutesy creative academics, but instead discover what I am capable of creatively outside of school. I dream of winning no awards. I want to leave a legacy as Nichole Nordeman would say. I want to teach my children better than the generations before us and help them soar higher than me. I want to love and listen to them. I want to finally serve my husband the way I think he truly deserves. He's the greatest man I have ever met (not above Jesus of course).

Life should not be determined based on circumstances; neither should your emotions or happiness. I am the biggest guilty party. I have allowed things around, people around me to "make" me angry, depressed, obsessed and just plain discontent. I am done with that. I am throwing it in the fire and allowing God to direct how I need to feel. While I sit here I am exhausted, feeling fairly overworked (underpaid, underappreciated, etc). It is the truth of Jesus' sacrifice that convicts me and brings me back to the foot of cross crying out for forgiveness and asking for strength that only could come from the creator of the universe.

Since Katie Joy was born the challenges haven't stopped. Lately there isn't a full day where I don't feel at my limits of what I can handle. Every day has some emotional or physical mountain that seems too high to even take a step. Somedays it's Katie's shoes, catheters, trips to Riley, phone calls, etc. Sometimes it's her disability. Sometimes the trauma of the day she was born comes flooding back. Sometimes it's family issues, work or money. Sometimes the mountain is actually myself (why oh why do we allow ourselves that comparison party). It's rare in our home to have an entire day of just plain normal quiet, fun, happy. I am seeing that while at this point we may actually have several difficult circumstances on our plate it is not okay to let those situations control me. Jesus died... I don't want to gloss over that. He died, an ugly, painful death..... for me, for all of my sin. Let me from now on with the strength of God and the Holy Spirit he graciously left me, take one day at a time and be grateful that this... this... is the day the Lord has made and I will rejoice and be glad in it.

Riley Trip 4- Ponseti Shoes

Our trip last Thursday went really well. I am so blessed to have a job where I can walk in, tell them what's going on and they cover my position. I didn't have to write lesson plans, get a substitute or even bat an eye about it because my family comes first.

The trip down was easy going and quick. We waited awhile to get into ultrasound where the techs took 30 minutes worth of pictures of Katie's hips. Ada enjoyed playing in the kids' area with my parents while I bit my nails waiting to hear the results. The 2 nurses were so kind to me and once again Katie took a nap during this exam! (way to go lil one!). After a few techs coming in and out and a meeting with the radiologist I was told unofficially she could be done with the harness and  her hips look perfect. Yup I started crying again, lol. I cry all the time those poor nurses get to deal with me. I was so happy I could hardly contain it. I walked with my head so high I was floating. We waited awhile again to get into see the orthopeadist. Finally...

Dr. Kishan, our ortho, gave the big thumbs up to take Katie out of her harness and officially say we are done and ready to move on!!!! My mom cried, I snuggled Katie so cherished. I will forever remember the moments of nearly ripping the harness into pieces and being able to hold my lil girl without anything in the way. He looked at her feet, heel and ankles and decided the Ponseti shoes were a good idea. Shoes with a bar. We were sent to the brace/casting clinic where they fitted her for her cool "skateboard shoes". 

I finally got my call yesterday from Riley telling me I can cath Katie only 2 times a day and if she's still under 30 mL through the weekend we can stop all together! Please pray this happens. Cathing her isn't physically all that difficult but emotionally it really takes a toll.

A HUGE thank you to the Wilson's and the girls that came to support me Tuesday. I am so ridiculously blessed that I have friends like this. The Wilson's are allowing me to take some relaxing time in their hot tub and Monie got virgin Pina Colada's, made chocolate dipped strawberries and gave me the freedom to be in a quiet free place. 

A new normal without a harness... much less stressful, thank you Lord for giving our doctors wisdom and the ability to have this kind of knowledge. I am grateful.

Hurry Up and Wait Riley Trip 3- Aug 21, 2013

We left at 4 am. We left hopeful, not happy persay but hopeful. We got there with time to spare. Our first stop was radiology to get Katie's kidneys ultrasounded. She was happy, Katie had gotten nearly a regular nights' sleep by falling back asleep in the car when we left the house. She smiled at the nurses and at us. We saw why we named her Joy. She is pure joy, that is her name. Then we went to Urology. She was weighed and for the first time in weeks got to spend A LoT of time out of her Pavlik harness. She smiled the whole way through her urodynamics test. She even took a nap! Meeting with Dr. King afterwards (THANKFULLY we got to see her early) we found out some of the hardest news since she was born (at least for me, something I have been dreading hearing from the get go). We have to start cathing Katie every 4 hours during waking hours. We have to log how much we get for an entire week and by the end of the week we call Riley to talk about the results. If we get less than 30 ccs reguarly we can stop (PLEASE pray this happens).

My energy level was nearly kipput by the end of all that. We had lunch got to our spot to wait. Our appointment was at 1, we were told we needed be there at 12:30 and it wasnt until after 2 that we saw our first dr. We had the develpmental ped come in, nice man but didn't say anything new. A neurologist nurse come in who didn't say anything new (we like our neurologist here in South Bend and he's way more accesible and helpful than Riley). We saw a SBA person who said she was "working" on a support group for Northern Indiana, clearly not very quickly. We saw the social worker who gave us information for discounts at local hotels and the medicaid waiver than can help adapt our home later if we need it. We saw a PT who agreed with our PT about her ankle, very tight. And then we saw the rehab dr. who attempted to play orthopedist/pt. I am not a fan of the rehab dr. I never know what she really does and she doesn't seem that impressive for being a main dr. of a Spina Bifida clinic in Indianapolis. We didn't get to check out until 4ish.

The string of doctors seemed pointless because from the start at around 2 we were told we might not see the ortho. I canceled our appointment for next week so we could see him yesterday instead of driving there twice. My little girl is stuck in a harness and wants to move. She needs to develop rolling over and wants to! We need her feet and ankles looked at and dealt with. all of this is the orthopedist! I was furious. I let every doctor know I was disappointed and every one of them let me know there was nothing they could do he was stuck in a trauma surgery. While I get that, why wasn't I told earlier, why don't they have a back up for this kind of situation, why can't they work with another hospital. Why is there only 2 men in the entire hospital that can see my girl and both are dealing with something else!? The last doctor I told her I was going to try St. Vincent because their ortho travels to South Bend. (Riley hates St. Vincent) Boy did that get the ball rolling. She says, "Well, Ms. Blye. I can't produce doctors out of the OR." Sure I get that, but I wanted SOMETHING. I was not about to travel 3 hours for them to tell me the single person I desparately wanted to talk to was not there. I demanded (in a semi nice way) an ultrasound be done of her hips because I do not want anymore miscommunication. She informed me that she wanted the ortho to see her right away for her ankles and would set up an appointment asap. I compromised and accepted something for this week. 

I have to go back to Riley Thursday for the ortho.

I am exhausted, raw and my heart is broken. Nothing went well. My sweet Katie Joy is going through so much and her smiles tell me we can do this, together, as a family, we can do this. It's not without tears and breaking down. It's not without hardships, but we can.

As we all fell into bed and drifted off to sleep. I remembered and thanked God for my husband. My sweet, easy going husband who is rock through everything. Thank you Jeff.

Riley Trip 2- July 29 2013

We went to Riley, got the Pavlik and are adjusting. It's not as bad as what I imagined and only one sleepless night so far.

Tonight, I am grateful for Katie's shunt. Sometimes it hits me hard that my child could have died. She had swelling on her brain! That's a really huge deal. I am grateful for a device that can drain the fluid and take away her swelling. I am amazed. I can deal with a large bump on her head in the shape of her shunt because she is alive. 

I am also grateful that while the harness is annoying her hips will not be dislocated in the end of her 6 weeks. 

Last night I woke up in the middle of the night. I thought of being in the NICU. I thought of the dings of the machines and the lights being so bright. I thought of my own hospital bed. I thought of coming home without her and waking myself up to pump milk for her. I thought, "How did we do that?" and then I followed with, "We did it because we had to." There are no options or rewinds or refreshes when your child is born no matter how healthy. You love them and you do everything you can to provide. While the pain of a c-section mixed with the searing pain of a life changing event like Spina Bifida was tough it did not kill me or my family. It won't. It can't.

Some days I have to talk myself into being ok. It's only been 3 months. I carried her for 9! I tell myself it's ok for this to take time. Getting used to my new  does life takes time, but I am cherishing everyday with my family. I don't want to be my parents' age looking back regretting not spending time with them. Billy Graham when asked if he had any regrets said something like he wishes he would have spent more time at home. 

I love that Ada is growing up. Watching her learn so much makes my heart swell. She really loves her sister and loves making her laugh. Ada is learning to be honest, which is also amazing to see. Katie wants to sit up. I think this shows her determination in her physical state. She loves watching faces and even has a favorite toy. I can't believe I get to be Ada and Katie's mommy!

Pavlik Confusion

I can't explain how much I love my girls. I am enjoying way more than I ever thought I could, bonding with them. I savor the sweet moments when I have both girls quietly looking at each other. I am grateful Ada looooooves being a big sister. Katie is now consistently smiling, my heart does leaps and twirls watching this. My excitement grows as Katie starts to smile at Ada more.

This week a nurse from Riley called. The orthopedist there has a differing opinion than the radiologist here. Riley's opinion is that Katie actually does have hip displaysia and needs a pavlik harness asap. I explained we were told already her hips were fine. The nurse said my concern about the difference in opinion is completely valid and will follow up with the doctor and call me back next week. My heart broke. My sweet girl may have to be put in a harness where her legs are stabilized in a froggy position. I know it's not a huge deal, but I feel horrible she has to go through all this. It's hard watching your child begin the process of development different than what it normally is. It's hard talking with Ada about spina bifida. She's so young. I'm so grateful she is like her daddy and learns well. She is so adaptive to learning all about Katie and she seems to want to know as much as she can.

Daily I find myself dealing with different emotions. My doctor, our friends and much of family says we are dealing with being Katie's parents well. I'm not totally sure what that really means. We arent rejecting her she is our 2nd miracle. She is important and we love her. I'm not flipping out about the whole thing, that would do no one any good. She is alive. 50-60 years ago her likelyhood of living would have been small. I will say it like I have before I can handle her having spina bifida because at least she is alive.

I learned at our last family doctor's appointment that the resident dr that took care of me in triage while in labor was actually quite scared for us. She was really shaken up that night we found out. I am grateful she had our doctor to learn from. He dealt with the emergency really well. I'm also glad to have affirmed that my emotions that night were appropriate and not too dramatic.

After getting the call from Riley this week I called my sister. I cried. I cried because I was confused about the difference of opinion. I cried because I hate that Katie has to go through this. I cried because sometimes it's the only thing that comes out. I love that my sister can pull me up and say things like, "don't you feel sorry for her. she is a strong kid, even as a baby, you teach her to be strong. she doesn't need your pity, she needs your strength."

I called my best friend and cried a bit more. I love that I can cry and say over the phone that it's really hard and she has a calm voice telling me it's ok. 

I know there are going to be even harder moments with Katie's development and being strong just comes with the life, but this week I felt exhausted and fragile. Being honest with myself is knowing that somethings are just hard and it's ok to cry as long as I don't get depressed. So... I am making small good moments into big deals.

We are making tomorrow night a family outing. A fireworks show together, finally some real quality time! We are taking snacks and hopefully creating special memories. I am excited and not letting the thought of a pavlik harness or feet castings or trips to Indy or spina bifida at all bring me down. I am going to enjoy this time together with my adorable girls and hunky husband. So take that Spina Bifida :-P

for more info about things talked about see below...

http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/tips-for-parents/pavlik-harness-tips/

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8270435/

Being Katie's Mom June 16

Things have settled a bit in the busyness factor of life just in time to speed back up again. We have had multiple appointments with our nuerosurgeon who says her shunt is working that way it is supposed to. First Steps physical therapy is underway. No "new" things report.  Our next Riley appointment is in August.

I have really hard moments still when I think Katie will react to her foot being one way or another and she doesn't. It really breaks my heart that she has no feeling from her knees down. My poor beautiful girl. She has no idea what it's like to have her toes tickled and playing 'this little piggy' has a different sentiment than with Ada. I do not waiver on God's goodness. I do not doubt He can heal her but I can't help but still be broken about it. I don't wallow in depression. I don't feel constantly down, but I do feel a huge responsibility to be the best mom I can. I'd be lying if I said I don't have angry moments because I do. I think, "haven't I been through enough??Growing up in an angry home, 2 family murders, an abusive boyfriend and a heartwrenching ministry catastrophe in Florida.. that isn't enough?" Then I have to step back. It really isnt about me and how many things I've gone through. Besides that I get to be the mommy of 2 beautiful children, the wife to an amazing husband, attend an incredibly supportive church and have an amazing relationship with the family I grew up thinking I wanted nothing to do with. I am blessed.

Spina Bifida won't define me or my family but it will create a venue for us to speak with others, a connection with people we never dreamed, It is a constant reminder that lfe is taken for granted and we get to be on a journey that we are not in complete control of. I am grateful for my girls and the man that is my husband and their father.

Riley Trip 1 May 8

What a trip. We started the day out with me a bit frazzled trying to remember everything we had to take. I really thought for sure I had forgotten something but I double and triple checked the bags. A peaceful drive to Indy turned into using my phone as a gps because we somehow managed to get off the road we were supposed to be on. Finally arriving at Riley then we had to figure out where to park and what building to be in. BEFORE we could do that Katie was super de duper hungry. Ah, there's the rub... I forgot the only bottle we had with a ring on it. I had bought more nipples and slipped those into the bag but not the bottle we normally use. Super Jeff daddy to the rescue! Jeff managed to use a multi-tool to create a ring out of a bottle lid. I felt really bad that he had to that and realllly grateful that he could manage it. Not a fun way to start our day and I'm sure I'll find the large amount of humor in all that in a few days.

Once we found the right building and the right outpatient sign in area we got in to see nurses and doctors right away. It was a whirlwind of people, most of which didn't say much new but gave us more paperwork and more "support" information for finances and otherwise. We have a rehab doctor, developmental doctor, neurologist, urologist, a social worker and an orthopedist. Nurses accompany all of those doctors. Thankfully they are working with people here in South Bend and some procedures and follow ups will be done here rather than there. All in all the appointment took about 2 and half hours. We met the Spina Bifida Association representative on our way out and received the date of our next appointment in 3 months.

I wasn't very encouraged or incredibly highly impressed with Riley like many people said I should be. I would much rather be here than to travel. I was actually more discouraged by going there than I have felt this entire time. They didn't have many great hopeful words of wisdom or seem to think she was anything more or less or better or worse than any other child. I got the feeling of indifference from almost everyone. Maybe it's because that's their expertise and it's not out of the ordinary to them. Maybe it's there way of being forward looking. Either way it wasn't what I expected. We have an order to get her hips ultrsound(ed) to make sure her joints are in place correctly. That is the only new thing we have at this point. 

Tomorrow we have more physical therapy and next week is a follow up to make sure her shunt is working correctly.

Attempting to deal April 28

I'm trying to come to terms with having a c-section. I am a huge proponent of natural laboring and delivery. I have done my research and know that c-sections are done waaaay too often and more often than not unnecessarily. A baby can be born breech. However, having a baby breech with hydrocephalus causes extra complications. Ada's delivery was the most empowering experience I have ever been through. I feel like I'm missing something in my life now. I can have a baby naturally and I didn't get to. I won't ever get to again either. (I know there are doctors that do VBACs but my doctor isn't one and after looking into the risks I'm not sure it's worth trying). My decision to have more children is much more serious than ever now. I don't want to willingly walk into a situation where I'd have to have an epidural or major surgery like a c-section. In texting a friend there really is a need to grieve the situation a bit because I lost my ability to do one major thing my body was created for. 

I'm trying to take one day or even one moment at a time in dealing with the current reality of Katie's body. I have much hope for her future, but there are times when I hold her little toes and feet and question what if anything I could've done despite my doctor telling us there was no way to prevent it. I think of the concerns I have for her future but toggle back and forth to the excitement of what it will be like when she does walk. There is a HUGE reason why her middle name is Joy. I will never regret her name choice. She and Ada will teach me much. 

One thing I know God gave me my family. My husband is the greatest man I have ever met. He is calm and handsome and the strongest person I know. I saw his strength during the weakest and most helpless moment in our lives when the doctor said our little baby may not live. I saw his joy and peace in finding out the she is living and is not struggling. I see his beauty inside of his very core of his being as he holds me through each day and depends on our Savior for everything.

I'm learning you can't really "deal" with things that are out of your control. All you can do is embrace the challenge as an opportunity to do as God calls you.