Hospice

After a lot of prayer and discussion with our families, we have made the decision to bring in hospice for Cal. It was not an easy decision to make. However, with Cal's discomfort increasing, we knew in our hearts this was the right decision.

When we met with Dr. McKenzie two weeks ago and she mentioned hospice, I struggled with the thought of it because I thought as soon as they came in we wouldn't have long with Cal. Since then, I have learned that is not the case. They will provide Cal with medicine and equipment (if needed) to keep him comfortable, and that is our main purpose right now...comfort.

With that being said, I made the call on Monday and we got an appointment for yesterday afternoon. A registered nurse and a child life specialist came to our home to visit with us. The RN was an older gentleman that was very kind and soft spoken. He explained everything to us about the company. They have a pediatric team that will be assigned to Cal. We do not need round the clock care at this point, but the care is there when the time comes. We will start out with a primary nurse that will check on Cal once a week to make sure the medicine is keeping him comfortable.

It was a sad day yesterday because reality was setting in for our family. Cal is not getting better. He is getting worse. However, in the midst of our tears, I felt peace. I have prayed long and hard about whether or not to bring hospice in, and I know we made the right decision.

We appreciate all the love, support, and prayers we continue to get from near and far.

Something to think about......

As I sit here on this beautiful Sunday afternoon, there is a question that I have been thinking about a lot lately and feel compelled to write about it.

Do you take things for granted? Do you really take in everything and appreciate what God has given you or do you expect it and go on about your day to day life?

My friend Hillary came down to Cleburne this past Tuesday to have dinner with Cal and I while Marcus was in class. I remember her telling me after she got home that night that she didn't realize the things that Cal couldn't do that so many people take for granted. She said that Cal couldn't even raise his head to look at me or put his arms out to hug me. She said she didn't realize this until she came down and saw him. I think most people think Cal is good when they see his pictures because he does "look" healthy. Most people in stores and restaurants that don't know us or Cal just think he is "sleepy". But if you really think about a 19 month old and what they should be doing, Cal has never been able to do any of it.

Throughout this journey, I have definitely realized many people take things for granted and don't even realize it because they are so busy. There have been so many times in the store where I want to walk up to people and tell them to be grateful that they can even take their kids to the store with them because I can't. I am not trying to have a pity party, but I just hope to encourage people to start thinking about it. So, please just take a minute and ask yourself these things. It doesn't matter what point of view you ask these from. You could be a grandparent asking these about your grandchildren. You could be a mother/father-to-be asking it about your future children. You could be a parent asking it about the child you have right now.

Do I take for granted that....
- my child can hold his/her head up on their own?
- my child can roll over?
- my child can smile at me?
- my child can hug me?
- my child can call me mommy/daddy?
- my child can play with his/her toys?
- my child can sit up in the bath by his/herself?
- my child can eat what I cook?
- my child can walk and talk?
- my child can breath on his/her own?
- I don't have to take my child to the doctor at least once a month?
- I don't have to get a shipment of medical supplies every month to be able to feed and medicate my child?
- my child can go to school?
- my child will graduate/go to college/get married?

The list could go on and on.

I know we are not the only parents going through this. There are many families with special needs children. I am not trying to get people to feel sorry for us. I know not everyone takes things for granted but a lot of people do including us before this happened. We went about our busy lives not appreciating the small things. Our journey with Cal has definitely made us appreciate life so much more. Marcus and I still have a 19 month old infant, but I absolutely love his sweet, silent stares at me. I love holding him in my arms and telling him how much I love him. Do I wish he could hug me or say mommy or tell me he loves me back? Yes! But I am so grateful for the sweet, silent moments we share.

All I ask is that after reading this, slow down, take one day at a time and appreciate what God has blessed you with. It doesn't only have to be about your children. Be grateful for your job. Be grateful for your home. Be grateful for a car to drive. Be grateful for food on the table. Do not take anything for granted! Enjoy your family and friends! Enjoy this beautiful life God has given you! It could all change in an instant for anyone.

We appreciate all the love, support, and prayers that we continue to get from family, friends, and people that we don't even know. We love you all!

Update

First, I want to say how excited we are about the response we got from the last post about the walk! We had so many people that want to come to Houston to walk with us in February. It will be a great day to spend together and raise awareness for mitochondrial disease. Remember if you can’t go to Houston, you can walk with us virtually from home.

Next, I had a lot of people that said they wanted to comment on the post last time but had to have a profile and didn’t know what to do. I believe all you have to do is create an account with a username and password. Once you do that, you can leave comments.

Finally, I wanted to update everyone on the latest news. I took Cal to the doctor last Monday, October 11th. It was just an appointment with his pediatrician to get his 18 month shots. What was supposed to be a simple visit to get shots turned into a very sad and emotional day. My mom was with me at the doctor that day, and we ended up having a very intense and emotional talk with Dr. McKenzie. Dr. McKenzie mentioned that his breathing was very shallow. She also told me that she thought it was time for me to stay home with Cal. I think it shocked me at first because we have been going about our daily routine and a part of me forgets that Cal has a terminal illness. I have just been waiting for the day to come where he is healed. I think I was so upset because I felt like my hope was gone. I did appreciate Dr. McKenzie being so honest with me though. She is the best doctor I have ever seen in my 26 years of life. She is caring and so compassionate. She told me that this is time I won’t be able to get back with Cal, and I couldn’t agree with her more. She said we can always make more money but we can’t have more time. So, with that being said, I called in for a sub on Tuesday and haven’t been back to school. I will be off for six months and looking forward to every minute I get to spend with Cal. I am so blessed to work for a principal that is caring and compassionate, too.

Another thing we talked about on Monday was hospice. Dr. McKenzie wanted me to spend a month with Cal by myself at home and then start to think about hospice. However, I think we might be looking into it a little sooner. Cal is very uncomfortable and has a lot of secretions in his throat. The only way to get medicine to help those things is through hospice. It is the hardest decision we have had to make thus far. No parent should have to decide when to call hospice. We have to stop being selfish though and help him be comfortable. Wouldn’t we want to be comfortable if we were in pain?

We continue to need your prayers. This is a very difficult journey that we are getting through with our faith in God and love and support from family and friends.