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.