Finding the good in every situation

Wow! A lot has happened since our last update in March. I turned 30 and had the BEST birthday celebration planned by my husband, finished SOL testing, had Caroline's gtube come out for the first time (what an adventurous day- props to the hubby for being the hero!), Caroline spent 4 unexpected days in the hospital with pneumonia, I finished up my 4th year teaching, took a much needed vacation to the beach, and my husband got a new job within his company. Things have surely been a roller coaster in our lives lately!

We have spent time enjoying the summer and being able to go and do as we please! Caroline did have her yearly MRI long scan, which we always dread because they have to sedate her but she did very well with it. We met with the neurosurgeon a week later to discuss the scan. Somehow, unexpectedly, that appointment was a very difficult one.

Neurosurgery appointments have never really been the appointments to catch us off guard but this one did. I still can't even grasp everything that was mentioned or talked about in that short 20 minute appointment but it felt life changing.

I left that appointment feeling defeated, that our future had been painted and it wasn't what we thought it would be. We have been sorting through everything, trying to find answers for Caroline, reaching out to other doctors and hospitals and it turns out that the answer has been right in front of us the whole time.

Caroline not only has Spina Bifida, but she also has severe low muscle tone and many other delays. Her development, which includes cognitive and motor skills, are about that of a two month old. It has been a hard and challenging concept to grasp for us. We knew the older she got, the more she fell behind. We wanted to know why she had the low muscle tone, why she was developing slower than that of other SB babies. It is not part of the standard Spina Bifida- that is generally only supposed to affect anything below the site (her bowels and lower extremities) but this wasn't the case for Caroline. We have considered putting her through genetic testing, traveling to see different speciality doctors, anything that would help explain her all over low muscle tone and development delays.

Our neurosurgeon put it all out there for us. It was almost as if he realized, this is the reason she is the way she is. There is a term that sometimes goes along with Spina Bifida called Chiari Malformation. In short, it is where part of the brain is pushed down into the opening on the spine and is being compressed, kind of like pinching the bottom part of the brain - the part of the brain that regulates temperature, muscle tone, swallowing, and other things. We have known Caroline to have this since she was born and the Neurosurgeon had not considered it anything out of the ordinary. I don't know what changed, if just seeing her MRI scans over the past year and a half or seeing how she is developing, but he pretty much told us this is the cause for the way she is. He is about 90% sure that the Chiari Malformation (the compression) is what has caused all of these unusual things for her.

And........ there is nothing that can be done.

That was a hard pill to swallow. Yes there is a decompression surgery- to remove part of the bone that is pressing against it but basically, the damage has been done. I just can't even put into words that feeling of hearing those words. She may never be able to hold her head up, eat real food, or meet many of her other delayed milestones. It literally was an unexpected life changing moment for us, as a family.

So we let it sink in for a couple days and felt the uneasiness of the conversation- replaying it and trying to figure out if we heard it correctly, had we gotten it right, did we understand what was told to us. Because in all honestly, that appointment seemed very much a blur looking back. So we had some pity for ourselves and tried to comprehend life of having Caroline rely solely on us for every single part of it. It broke my heart and I was overcome with fear. All I have ever wanted was Caroline to truly know and comprehend how much I love her.

After a few days and quite the pity party, we changed our outlook. We wanted to see the good in all of this. We realized we had finally gotten an answer to an eighteen month question of why. We still have high hopes for Caroline. That she will show us so much of her personality and will only continue to improve, even if it is at a much slower pace. We will continue to love and care for her with every single bit of our hearts. Even when days look dark and hard, Caroline will laugh or smile at just the right time to let us know that everything is how it is supposed to be. She shows us that she knows we love her. I know I have said this before but the love for her is extraordinary. I cannot explain it and it just gives us so much hope for her and we have to remain in the positive state of mind. Even if we have to do everything for Caroline for the rest of her life, we are committed to it. We will do WHATEVER we need to in order for her to be happy and healthy.

So at this point, that is all that matters to us. Maintaining a good life with our sweet girl and doing whatever we can for her. Our outlook on life has changed, dramatically, since becoming parents. We are realizing quickly, the things that truly matter. Every part of bringing Caroline into our family has been life changing. To be young and have us experience these big feelings and emotions, it has been a turning point. We have been pushed out of our comfort zone and have learned how to navigate this new and ever changing life. It has been such a learning and growing journey and am thankful for this path we are on. We know we are becoming the family we were truly meant to be!

So if you have little ones, or grown ones, hug them and tell them how much you love them. Let them know, SHOW THEM, every single day, how much you love them. Be grateful for the small things and be thankful for what you have. Look for the good in things, find the good in every situation you are faced with.....every single day. 

That moment you become a mother

I know I have recently updated the blog but it has been a whirlwind of a week with our little girl I wanted to write about it.

The day that Caroline was born was the day I technically become a mother. But today was a day when I truly learned about my mother instincts. Everyone always told me, "you know your child best" but I have not felt that way since the day she was born. Caroline has been a mystery to so many doctors in her short little life and I have always wondered if I would ever get that mother instinct of knowing what is going on with my child. Well, this week, I did.

Most of you know that we have spent the past four days in the hospital with Caroline. It was not a planned trip. We were out of town, enjoying a weekend getaway in the mountains with family when she started running a fever of 100.9. Now, I know you are probably saying (and we heard it from several doctors) "that isn't a fever!" but Caroline cannot regulate her temperature like we can so her normal temperature is around 96 or 97. So yes anything over 100 is a big deal to us. Plus, this is the first time it had gotten that high. We gave her tylenol and waited. Well, temperature did not come down and we were 3 hours from home. So Jeremy and I made the decision to head to Charlottesville, only 2 hours from us, and since we had an appointment on Monday there, we would be in town in case we needed anything. We ended up taking her to the emergency room there. I hesitated doing it, but her fever wasn't coming down and it wasn't like her. We had thought maybe a UTI or ear infection so we went ahead and took her, hoping for a quick answer and some medicine and we would spend the night in a hotel and be ready for her appointment the next day. But that is not how it went.

So there we were, in the ED, have blood drawn from her tiny blood vessels, taking chest x-rays, being confined to another MRI machine with a screaming baby (we all know how much I love those), trying to determine the cause. Could it be her shunt? Could it be an infection? Could she be septic? Could it be a Kidney infection? What about pneumonia? What could this be? Tests after tests were being run and SO many doctors, nurses, residents, medical students, and specialists were in and out of our little room.

Now I knew it would be a lot to take her to the ED because they don't know Caroline there and having to start from the beginning with her complex medical history (the doctors words) was going to be overwhelming and I knew I would have to repeat myself several times to several different people and I was ready. "Yes, she has low muscle tone. No she doesn't move much. Yes she has swollen feet and hands. No she cannot sit up" I explained and explained and tried to give them an idea of a baseline on Caroline. Well, they decided to admit her as they could not determine the cause of the fever. The test for the flu was negative, blood work looked fine, Shunt Series looked good and had not changed. Just a total mystery. I mentioned about a UTI or ear infection but one resident said her ear looked fine and they tested her urine and was negative. We were at square one and frustrated.

We spent he next three days in the hospital. Being visited by many more doctors and nurses and still no answer. Finally, after none of the labs and tests showed anything and Caroline's temperature was down, they decided they would call it a small virus that she was able to fight off. Ok, great. Basically, no answer but the good news was we were going home. We had spent hours of waiting, contemplating, trying to sleep in a hospital chair while being woken up several times during the night and was beyond exhausted. We had missed work and scrambled to take care of things while we were away. We were ready to go home.

I told the doctor before we were discharged that there was a lot going on with Caroline that has been undetermined and we were frustrated. That I didn't know what to tell doctors, I did not know which piece of information was relevant or which wasn't. I could talk about her medical history for several hours but we all know doctors don't have that kind of time. I tried to keep the important things at the top of the list and I had hoped I told her all she needed to know. I felt defeated, that we had not determined a cause. I was frustrated because for once, I wanted a doctor to tell us they know FOR SURE what was wrong. I feel no doctor has been sure of anything with Caroline, even when I was pregnant with her. There were so many gray areas and I have never felt at peace with her diagnosis and things left unsaid.  I had flashbacks of her being in the NICU and so many doctors could not figure out why she was doing the things she was. I felt desperate to get out of that gray area. I wanted an answer. I wanted someone to come in and say I know what is wrong and this is how we are going to fix it. But no one did. We left the hospital, like so many other times before, without an answer.

Well we followed up today with our pediatrician at home, just to make sure we had a good first night at home and nothing had changed. I had debated about canceling the appointment because Caroline was acting like herself.  I took her anyways, if anything, to keep our pediatrician in the loop about things going on with Caroline. Well, wouldn't you know it, the pediatrician looked her over and said she has an ear infection.

A FREAKING EAR INFECTION!

I literally just laughed out loud when she said that. We had spent the past 4 days, surrounded by doctors and specialists, running test after test, with nothing showing up.  I knew it, from the beginning and I should have listened to myself.  But I believed that doctor in the emergency room, that her ears looked fine.

A lot of frustration and anger hit me. I told the pediatrician our frustration and she explained that when a child with a complex medical history comes in, they have to check everything out. That when a child has "hardware"  (as it was referred to many times, her shunt) in their scalp, you have to take those precautions to make sure it is functioning and not developing an infection. And I get it...they were checking for the serious things, for the "I hope we never have to be in the hospital for this" things because that would be miserable. I get it. But, while they were trying so hard to rule out the complicated things, they had missed such a simple thing. Her ears were not checked again since Sunday night, despite being asked to check them again, even after telling them she would not lay on her left side (red flag to ear infection, right?)

As frustrated and irritated as I am, I have to take this as a learning experience. What's done, is done. I can't change it. But, I am learning to become a mother. I am learning to listen to my instincts. I DO know my child and I need to make sure I let that be known. I know doctors will always want to investigate the big things, and I want them to be consider everything. I want them to also know that Caroline is a child, just like any other, and she is capable of just having ear infections and runny noses like any other child. I am thankful we have gotten an answer and an antibiotic and look forward to her being better soon. She has definitely kept us on our toes since she has come into our lives and I know she always will. But I need to learn and trust myself. I did get that mother instinct after all and I am going to put it to good use!

Thank you for all the kind words and prayers during the past week. It has been a whirlwind and we are learning so much about our sweet Caroline. She has surely gotten her share of extra snuggles and loving this week and we are so thankful to have her in our life. We know she will keep us busy but we ok with that!

A father's love

I have been thinking about this post for some time now. I just can't help but fall in love with Jeremy more and more each day when I see him with Caroline. Jeremy had written a blog post called, "A Mother's Love" back in December 2015, when Caroline was just a little over two weeks old and I felt that it was my turn, to talk about the love Jeremy has.  (Warning- this post will be mushy and sentimental!)

Jeremy and I met after we had both graduated high school. Ironically enough we went to the same high school but never spoke to each other. But the summer after and my freshmen year of college we had some mutual friends and started hanging out. I knew I liked Jeremy the moment I met him. I know that sounds cliche, but I knew he was someone I wanted to be with. We kind of dated on and off the first year I met him. I was away at school and although it was only an hour away, the distance became an obstacle. Finally, on April 23, 2006, Jeremy had gotten a plastic ring from a quarter machine and asked me to be his girlfriend. It was cheesy but cute and I was excited. We were determined to make it work.  We dated through college, he finally got in Longwood and would join me at school for a year until I graduated then the roles reversed. I was home and he was away at school. We had our tough times, being young and trying to make things work, but things seemed to stick. No matter what happened or the distance between us, we always found a way to work things out and be together.

Fast forward 5 years later on a trip to DC to visit friends of ours one fourth of July weekend. We took the train up and spent that afternoon and evening with friends. I just knew that Jeremy would propose that night so I made sure to be dressed up a little bit more and was very excited. Well, he didn't propose that night. I was so bummed because I thought for sure he would! We had just found out that day that the offer we made on the house was accepted. So we spent the next day exploring the city and we finally made our way back to the hotel around 7 that evening. We were both so exhausted. Jeremy was going downstairs to get a couple drinks and then watch the fireworks from the window in our hotel room. We were too tired to adventure out to go see them so we figured since we had a good view to just stay in. Well, as we were watching them out the window,  Jeremy tapped my shoulder and when I turned around, there was a beautiful ring in his hand! I cried and he cried and then he finally got down on one knee and asked me to marry him. I later found out, when Jeremy went downstairs to get drinks, he also called my dad to ask permission and in the background you could hear my brother, Jeff, yell out "It's about damn time!" One of the most memorable moments of life.

A year later we were married, standing at the front of the church I had grown up in, in front of our families and friends, vowing to love each other for the rest of our lives. It was such a fun day and almost surreal. I was getting to do life with this guy I had been with for 6 years and couldn't imagine anything better.  After we got married in 2012, we moved in our first house and started on our journey together. The first year of marriage is tough. You are learning to spend every day with someone and you need to find routines and what works and it took time to get things sorted out. We were both working and I had (finally) gotten a job teaching. None the less, we loved each other day in and day out and did whatever it took to make things work.

In 2014, I became pregnant and had a miscarriage at 9 weeks. It was a whirlwind of emotions in such a short time and it was new experience for us both. We had celebrated love and excitement which turned into loss and sorrow. But, we did it together. I had never seen Jeremy in that way before. The comfort and strength he gave to me during that time....it was unreal. It was everything I needed and it came from the one person who meant the most. We moved on from it together and knew one day, we would welcome a baby of our own. We bought a new house and spent time working on the house and our careers. Finally, in March 2015, I had gotten a call from the doctor to confirm that I was indeed pregnant again. I had taken 8 at home pregnancy tests, 6 being negative and two with a possible VERY faint line. So I ended up having bloodwork drawn to confirm. They called with the results saying that I was pregnant but my numbers were very low so I needed to repeat it the next day. If the numbers did not increase, then I could have possibly had another miscarriage. Needless to say that night, we didn't sleep. I was convinced I had miscarried again and was so very anxious for the next day. Well I had the bloodwork done and my numbers had doubled.....we were officially pregnant again! I was very nervous and anxious as I didn't want the same thing to happen again. We finally made it to our first appointment with the doctor around 12 weeks and was relieved to hear the heart beat and knew this was it, we were going to have a baby!  We spent the next few months celebrating and settling in to knowing we would welcome our little one in December that year.

As I have shared before, gender reveal day came around and we found out that there was something wrong with our baby. Little did we know from that day, the journey we would be on from there.  I had seen Jeremy in times of sorrow when we experienced our first miscarriage but the person he became after finding out about Caroline was incredible. He became my "person" that was so full of hope and encouragement...saying things to me constantly like, "We will do whatever we need to", "She will be perfect for us", "We can do this together". I  was so overwhelmed and in shock and I was even more worried (in a weird way) that Jeremy would resent me, thinking this was my fault.  I was so wrong about those feelings and he was the complete opposite. I couldn't have made it through those last few months without his support. I knew that this was meant to be, that our love and life and our sweet little girl was all meant to be. We saw several specialists for the remaining months, monitoring our sweet girl, and finally, on Thanksgiving Day our little girl arrived via c-section. She was beautiful and perfect in every way to us.

Our sweet Caroline is 15 months old now and we are learning every day from her. It has been an adventure and I have to say, I have the best teammate possible. I can't describe in words the love Jeremy has for Caroline. He absolutely adores her, every single day. His love and compassion for her is remarkable. I always knew he would be a good father but seeing him with her...it melts my heart every single time. I am so thankful to have him in my life. The love and support he provides us is amazing. I never would have thought that 11 years ago, when I met him, this is where we would be...but I wouldn't change it for anything. Everything is just where it is meant to be. We are learning and growing each day, thanks to our sweet girl, who has brought so much love and adventure into our life. Who knows where the next 11 years will take us but I am just thankful to have this man by my side. I know we will be able to tackle anything that comes our way. I am so thankful to have gotten the chance to see Jeremy grow in such a way that makes my heart happy. I know that he will continue to grow into an even more wonderful father and husband.

We love you, Jeremy. Thank you for being you!


Love,
Julie and Caroline

The question

So I recently stumbled upon a question that was posed for special needs parents. The question read, "If you are a parent of a child with special needs, what is one thing you wish your family and friends knew about your life?"

Wow, what a question!

I was very fascinated and interested in the different responses, I actually read through all 170 of them. I could relate to so many of them and some were truly good advice. I decided to compile of list of some of the answers that were true for us and share them. It was encouraging to see so many of the same shared feelings.  So here it goes:

1. First and foremost, I don't like hearing "I don't know how you do it".  I am a parent, just like so many others out there. I am no saint or superhero. I just try to do everything I can for my child and want to give her the best possible life. Isn't that what ANY parent would do? Her needs just happen to be different but I still try to meet them as best as I can. Yes it's hard, but parenting in general is hard, it all comes with struggles of different kinds. So know that I am a parent like you, learning as I go!

2. Don't feel bad for us!  This is so true because we don't feel bad for us and you shouldn't too! I have seen that "pity" look a few too many times and every time I see it, I hate it. Caroline is a beautiful blessing and there is no reason to feel sorry for us. We have made some adjustments and yes it's not the "normal" life but it is our life and it is beautiful! It is worth smiling about, not feeling bad for us!

3. Please, please do not ask "What caused it?"...ugh. I really hate this question and am actually surprised at how many times I have had to stumble my way through an answer for it. I spent a lot of time, I mean A LOT of time feeling guilty and trying so desperately to figure out how this could happen,  how our perfect child was diagnosed with SB and what I did to cause it. I blamed myself for a very long time (most of my pregnancy and a lot of the first year...). What if I had eaten better? What if I had taken the extra folic acid, more than the regular prenatal vitamins? What if I hadn't come down with a terrible cold when I first got pregnant? What if I hadn't of pushed myself and made myself relax and take it easy more when I was pregnant?  It is all "What if" questions and I could go on and on about any little thing that may have (or may not have) caused it. But, bottom line is, I will never know what caused it and quite frankly, it doesn't matter. I have had to learn to accept the way things are and figure out how to navigate from there.  There is a lot of blame that comes along with having a child with special needs, from both parents. I get that you want an answer, an explanation. We all like to have explanations for the way things are because then we feel like we are in control and can fix it. But, some things aren't meant to be fixed. Some things are just meant to be, however they are. So please be considerate of asking 'what caused it". I welcome you to ask about Spina Bifida and I will be happy to tell you all that I know (trust me, I have done quite a bit of research on it!) if you are interested in learning more about it. But, don't focus on the past, focus on the future.

4. I worry, a lot.  As parents, we all have worries about our children. We worry if they are eating enough or sleeping enough or if they weigh enough or if they are getting sick. We worry about their dry skin or flaky scalp and everything else. We worry. That's what parents do. But, I worry for all of those plus more. I worry about short term things but I also worry about lifetime things. I worry about her life and what she will be able to do. I worry about what will happen if something happens to me or Jeremy, who will take care of her, who is capable of taking care of her. I worry about hard decisions I know we will have to make regarding her health. I worry we are not doing enough, could be doing more. I worry about her going to school and making friends and adaptive equipment she will need throughout her life. I worry about her shunt malfunctioning and her cognitive abilities. I worry what her future will be like.  I worry ALL THE TIME. I am thankful that I have Jeremy, to talk with about these worries and he truly keeps me grounded. He makes me focus on the good...and the "right now". I am also thankful to talk with my parents, who have "been there, done that" and can relate. But I keep these worries, all of them, and try to deal with them. But know that even if I don't show it or can put a smile on, I have a lot of worrying going on in my mind. Which leads me to number 5.

5. We need you. Yes, we need social interaction just as much as any other parent. We need our friends and family. We want to feel "normal" too, even if it is just for a little bit. We need someone to vent to, to talk to, to laugh with. We need to keep ourselves involved in other relationships to keep us mentally healthy. So please don't be scared that you may not know what to say or what to talk about. I don't need to talk about my child's needs or differences....I can talk about poopy diapers and sleepless nights. Heck, I can talk about weather or work or anything else. But sometimes we just need you.

6. We need a break.  All parents need breaks and I am true believer that they need to happen often! You have to keep your sanity so you can give everything you have to your child. You need those timeouts and so do we. We are not able, though, to just call up anyone to babysit because Caroline needs extra care. We only have a handful of people (our parents and Jeremy's grandparents) who can keep Caroline. We feel comfortable with them because they know Caroline, what is normal for her. They know about her gtube, feeds, shunt, and her low muscle tone. They know the positions to put her in and how she functions. So, because we only have a few people that are able to watch her, we cherish our break time A LOT. So if you see us out, without Caroline, know that we are taking care of ourselves, we are taking a break and we do not feel guilty about it. We know she is in good hands and we need that time to recharge. Jeremy and I have also become pretty good about taking turns keeping Caroline while the other one goes out because we need to allow ourselves that time (a couple times a week!), even if it means walking around the grocery store by ourselves! So please don't judge us for being away from our child. Everyone deserves to take a break!

7. Please do not ask what our child will be able to do. Trust me, if I could predict the future, I would be able to quit my job and make a lot of money. But I can't, and neither can doctors. So while we can guess and think about it, we do not know what Caroline's life will be like. We don't know if she will walk or talk or eat or what her cognitive development will be and we are OK with that. Of course I would love to know all of these things so I could prepare myself but I can't. And I am afraid if I say "She won't be able to walk" then I am putting that idea in my head and that is setting her up for failure. I have to believe she will do everything she can and I have to encourage her along the way. I need to have the right mindset of believing in her so she can believe in herself. Her neurosurgeon told us the most important piece of advice we have heard - "Don't let anyone set a limitation on her". This statement has meant so much because only Caroline will show us what she can do and she will do that in her own time. So please do not ask us "if she will be able to walk" or "if she will be able to talk" because I cannot answer those questions and honestly, it doesn't matter! I want you to be OK with not knowing, just like we are! Focus on encouraging her to do all that she can!

8. Lastly, we cannot thank you enough. Seriously, I have felt this way since we found out about Caroline having SB. We have been overwhelmed with the love and support shown to us from so many...from family and friends, people we hardly even talk to, sometimes people we don't even know. I just want you to know, that even if I don't respond or reply or show that I notice, please know that I see and hear all the wonderful things you have said to us. Please know that we could not do this without the love and support from you. Caroline has been blessed with many loving people in her life, to cheer her on and watch her grow. We are thankful to share this journey with you and know that all of your words and gestures holds a special place in our hearts. You have helped make our love for Caroline even bigger and brighter!