Deeper than the diagnosis-Guest post

Deeper than the diagnosis-Guest post

I am so happy to introduce you all to my guest-blogger! The family I used to Nanny for, has always mentioned this mama to me.  They bring her up, and all they can do, is smile.  She embodies strength, love, compassion and faith. I couldn’t wait to meet her, and when we did, everything they had said about her was 100% true.

Marty has a daughter named Caseycaseybirth

and blogs about her here.  Casey’s life and journey has been anything but easy but she has the strength and will to keep fighting every day.  Here is a little background about Casey from her website:casey

The official diagnosis of HIE (Hypoxic Ischemic Encephalopathy) was given. Casey has many side effects/complications. Casey has Quadriplegia CP (Cerebral Palsy). Casey’s CP is a stiffness in her arms and legs. The stiffness in her legs has lead to a deformation in her feet as well as a dislocation of both hips. The stiffness in her hands lead to cortical thumbs (pointing inward). Her arms are much looser than her legs, but still very stiff. In addition to CP, Casey also has a lot of her basic reflexes missing. Casey is not able to suck, swallow, gag nor blink. Without the ability to swallow Casey’s air way is in constant risk. Suction equipment is needed to remove secretions, and anything else in her mouth/throat, in order for her to breath. Also, without the ability to swallow Casey can not eat by mouth. All of Casey’s nutrients and calories come in liquid form through a G-Tube. Without the ability to blink, eye safety is another issue. Moisture is supplied often with drops and lube, and Casey’s eyes have to be covered when there is high risk for foreign objects near the eye. Casey also has moderate hearing and vision loss. She is legally blind, but the eye doctors believe with help she can eventually see. Her eyes work, she is just not able to comprehend everything she sees. The same can be said for her hearing. She hears some, and with hearing aids she hears a little better, but the loss is more about her brain not comprehending the sounds than it is about her ears not working.

I reached out to Marty, shortly after meeting her, her husband Tim, and Casey, I wanted to see if she could describe what life is like to everyone else to constantly “worry/stress” about Casey’s life/condition.  Here is her response:

My daughter, Casey, has MANY medical issues. Her condition is considered degenerative (getting worse over time). While her personality is bigger every day, her body is slowly (sometimes quickly) failing. Her list of diagnoses grows and grows. Some of the diagnoses are serious and we do lose a lot of sleep over them and others are much easier to handle.

As Casey grows her lungs are getting weaker. She needs oxygen most of the time, where even just 6 months ago she rarely ever needed it. Putting a nasal cannula on is easy, but what this signifies is very hard to accept. I know that her needing more oxygen means her lungs are getting worse. Her bones are very brittle and she breaks very easily. The bigger she gets the harder it is to move her and position her and she is at higher risk for more breaks. She has skin issues as well that increase as she grows. Her seizure activity and her GI issues are more complex each day.

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We have been on borrowed time since Casey was born; this is something we have been reminded of often. We have talked with her many specialists about what our future holds. We know her lungs will fail, we know her GI system will fail, we know her seizures will worsen, we know her body deformities will add to the internal systems failing and will eventually cause her pain.

For some people the end is quick. They may get sick and then in weeks or months it worsens and that’s the end. For some they may have a catastrophic event- a heart attack, a stroke, a big seizure. For others, like Casey, it’s a slow progression that started the day she was born. Some major illnesses speed up the progression, while some of her treatments may slow it down. We are very aware every single day that our daughter is dying. This takes a toll on a person.

On Casey’s good days we do everything we can to fill the day with things we know she enjoys. On bad days, we do our best to comfort her and to let her know she is loved. On bad days, especially when we seem to have many of them, we can’t help but wonder if our time is running out. In the back of our minds we are always preparing for the end. What will it look like, how can we be sure she is not hurting or scared, will we know when it’s time for us to let her go?

Being part of the special needs community has many rewards. I get to meet so many amazing people.

One big down side however, is the loss. It never gets easier to watch someone lose their child. There are some children that remind me of my own, these losses are very hard and are very real reminders that at any day it could be my child.

My husband is my rock. He and I share our hopes and fears for our daughter. Some days are really hard. We kind of take turns pulling each other back up. I cannot imagine going through this without him. We have amazing friends and family that support Casey (and us). On bad days I may not return calls, or I may be a bit of a downer. Our support system never leaves our side or takes it personal if I disappear for a little while.

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I have lost a few friends and we have grown apart from some family over the years. It hurts when relationships end, but the relationships that have remained and the new relationships that have grown are REAL. I know that the people in my life right now are in it for the long haul. I value the relationships I have in my life so much and I am so thankful for our amazing support system.

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My priorities in life have changed a lot since Casey was born. I used to care about clothes, vacations, nice cars, and a lot of material things. I don’t care about any of that anymore. Now I care about the people in my life. Mostly, I care about Casey and making sure that she knows how much she is loved every single moment. The life I live now is not at all the life I pictured for myself. It is full life, and a happy life, just a very different life than I had planned.

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The mothership has sunk

Have you ever felt like you literally couldn’t do ANYTHING? That is exactly how I felt yesterday.

I was woken up at 4am by my lovely daughter calling out for me to “open the door, come in, mommy wake up, etc.” While I tried to ignore the calls for me, I suddenly started getting these really sharp pains in my lower abdomen.  I was like “oh, no, please don’t let this be what my mom had the day before”.  Well, sure enough, it was! I will spare you the details, but trying to fight through the nausea, vomiting, diarrhea, and get ready for work took ALL of my energy.  I slowly got in my car and headed to make my 40 min drive, only to make it half way.  I couldn’t life my arms or my head up anymore and I had to call in to work.  I NEVER do this, and I felt SO bad that I am making it up by working tomorrow.

This brutal 24 hour virus took the LIFE out of me.  I headed back to my moms house, made it somehow back, just to hop into bed and wait and pray for the immodium and pepto bismol to kick in. Of course, my wild and vibrant toddler wasn’t just wanting to lay in bed as she was already wide awake and ready to start her day.  I mustered up the strength to make her juice and let her eat her oreo snacks in her diaper bag, but that was it. I couldn’t be a mom, and I felt SO bad.

Thank goodness my parents agreed to take Brielle for a few hours so I could just rest, knowing that’s what I needed the most.  You see, this virus everything out of  me to even move, or lift my body up at all.  I rested (not slept) for a few hours while they were gone, and then tried to get enough energy to get out of the bed while Brielle was napping to make some rice and apply the heading pad on my lower abdominal area.  Then, the fever started kicking in again, and I couldn’t do anything for Brielle.  It was the moment I knew I needed to head home to Shane to take Brielle for the rest of the evening.

Have any of you heard the song “Jesus take the wheel” by Carrie Underwood? It’s so good, and it was the song I was singing on the entire way home (the longest hour drive of my life).  Shane took care of her and unpacked my car when we got home, and took her fishing until it was time to come home, get a bath, eat dinner, and go to bed.

It was so hard for my Type A personality to have no control over my situation and just let everyone take care of Brielle, but also take care of me.  Thank you to my parents, Shane, and my friends for wishing me well-wishes when that was what I needed to hear the most when I couldn’t even convince myself to get out of the bed to go pee.  I now know that our body can survive on very minimal food, very minimal sleep, and very minimal liquids (well, at least for one day).

Thankful that today I was able to deep clean the house, lysol everything to prevent Brielle from getting sick, washed EVERYTHING that could possibly be washed (6 loads),gave 2 full trash bags to the donation station, and even made it to the gym for the first time in a couple of weeks!

Cheers to good health, good family and good friends. And of course to the Man upstairs! 🙂

A room without books

A room without books

A room without books is like a body without a soul-Marcus Tullius Ciciero

If I have ever had a life changing experience in a book, it would be the one book by Author Angie Smith called I Will Carry You. This book is written from a mom, who finds out that she is pregnant with her fourth child and the baby is “incompatible with life”.  Not only does this woman exemplify faith throughout the whole process from finding out her results, to the birth of the her baby girl, all the way to when her baby girl passed and beyond.

She describes the grief she feels and how she will always be coping with the grief, just in different stages.  She provides prayers for us moms who have gone through what she has gone through, or are currently in the situation right now. She provides scriptures  in the starting of each chapter from the Bible and one of my favorite ones from the book is “Remember your word to your servant, for you have given me hope.  My comfort in my suffering in this:Your promise preserves my life.” Psalm 119:49-50

I wish I could say my life without reading would be the same, but honestly I feel so good when I truly take the time out of my busy life to sit down and read every night.  There is something amazing that washes over me when I finish a good book that I can’t wait to tell everyone about!  I think reading is knowledge, reading is learning, reading is powerful.

Books are amazing and I know today in this world everything is read through the kindle or through the phone, but take a step back and really savor holding that book, flipping the pages, and having to use a bookmark so that you don’t lose your page.

I LOVE good book recommendations about all walks of life and if you have a great one in mind, feel free to leave comments/suggestions!