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.