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Monday, September 3, 2012

Touchy subject that I am not afraid to talk about.

This blog entry may offend some, or some may question my way of thinking. Although everyone has that right, I hope this does not change how anyone thinks of me. My life has been all about Kadyn the past 5 years, and it will continue to be all about him. He is my son and my love for him never stops growing. It never leaves me heart no matter what. Please read this with an open mind, and an open heart. I don't expect anyone to understand my feelings, nor is that my biggest priority, but getting these feelings off my chest and continuing to carry on my life with Kadyn is all that matters right now.

I find it awesome how I don't see my sister for awhile and we just pick right back up like there was no time lost at all. We were talking about Kadyn a lot because I was updating her on all we have been through this summer. I confided in her in something, and I've not shared this with anyone. So here it goes.

My thoughts about everything with Kadyn:

I believe I was blessed with Kadyn for many reasons. To become closer to God and to help others also. I believe going through everything I have been through with him I've grown a lot. I've grown in the Lord and I've grown for myself. Since getting Kadyn's diagnosis my goal was to figure out every way possible to give him the most in life, to do everything possible to be sure he reaches his dull potential. I never cared, or worried about "how long I had with Kadyn" I knew this answer was unclear and I knew Kadyn could live 1 year, 5 years or ever 70 years. Only God knows this. There is a reason why God hasn't healed Kadyn. God knows what he is doing, and I'm not interfering at all. I've grown to except that Kadyn's could eventually end his life. I've accepted this and although I know when this happens my heart will heart for a long time, I do know there will be a bit of celebration through the tears. How? You ask? Kadyn's life has been nothing but hospitals, surgeries and a fight to survive. Knowing that his body and mind will be at peace, brings a lot of acceptance to my heart. I cherish the time I have with him, since I for sure do not know how long that will be. Although for God to call him home, I am ok with that. In heaven there is no pain, there is no failing shunts, no seizures, nothing but Glory awaits. Kadyn has made an impact on many lives with people I may never meet. I'm thankful for that. I am thankful that I had the experience.

Why am I making this post?

A few weeks ago when I was asked about giving Kadyn a feeding tube, his PCP sat me down and explained to me (She is also a Palative Care/Hospice Dr) that this maybe the being of the end for Kadyn. He is starting to move backwards a lot. She said she could be wrong, and she apologizes for it, but she wants me to know that she has seen this before and this is what I need to prepare for. She also mentioned that she hopes she is wrong because Kadyn is such a blessing. She basically stated that a feeding tube is good. I can give him the nutrition he needs, I can give him everything. She also said that if it is his time, a feeding tube can also make it a long drawn out process where he suffers since I will be giving him the nutrients to keep his body going. *NOTE SHE DID SAY SHE HOPES SHE IS WRONG*

I do know that this subject is touchy, but I am open about it. I've seen Kadyn when he is so sick that we did not know if he would make it or not. I've seen Kadyn go through 20+ brain surgeries and 5+ more. I've seen Kadyn seize for hours on end, having been intubated and putting in a medical induced coma, just so his little body could rest. At the same time, I've also seen Kadyn laugh for no reason (God's angels playing with him), I've also seen Kadyn smile so big when most would be feeling sorry for himself. I've seen Kadyn take his first breath, sit up on his own for the first time, hold his bottle on his own for the first time, say his first words, and learn many things.

So now we must decide. Is Kadyn going through a rocky part in life right now, are we going downhill just to go back up, must we take one step backwards to start going forward again? Or do we accept that maybe his little body is getting too tired to fight anymore and it maybe his time.

Although I never want this. I want Kadyn to live and be happy and I want to take care of him for the rest of my life, but that is for my benefit I think. I've just learned to accept something that most won't. No one wants to lose a child, no one wants to live for the heart break. I know this, I don't either, but when it is constantly in the air, thrown in your face daily, you kind of learn to accept that it may happen sooner than later. NO Parent should every bury a child, but sometimes we have to. Sometimes a condition, life choice, or pure being in the wrong place at the wrong time will take a life. I just hope I have many more years with Kadyn.

Last and Update on him:

Kadyn's right side has full function now accept he will not grasp his bottle with the hand but he does pinch now and moves it all around. He is happy, smiling, laughing but no longer saying any words he once did say. He is a rolly polly still.

Since Kadyn is born, it's been all about enjoying everyday/minute/second/hour/week/month/year with him. I've always have and will continue to do.


sara said...

Thank you for sharing your thoughts and feelings so openly and honestly. You and Kadyn both have been a blessing for many people and touched so many lives, like mine. God does know what He is doing, and He is so much bigger than all this other stuff. Thank you for reminding me of that...

Jennifer said...

Kadyn is such a sweet little boy and I can tell he is a blessing. I am praying for you and Kadyn. Thank you for sharing your thoughts, it is your blog and there is nothing wrong with that at all! If someone thinks otherwise then it's their problem! Please keep us posted. God does amazing things!

Lee said...

My sympathies. There is no tougher time than what you are going thru now. God is all powerful and at the end of day knows what is best for Kadyn.

Sue Z said...

Continue to rely on God to see you through. Only you and Kadyn's dad can make the right decisions for him ... don't let others influence you. I pray that you have many more years with Kadyn, but if not I pray that God will help to heal your heart.

Maria from Spain said...

I absolutely understand you. You're giving him love and the best care, God is in charge of him. In my opinion a feeding tube or a Mic Key button ( easier to use than the tube)is not an aggressive measure and I've seen many children improve their quality of life when having them. Keep on praying for Kadyn every day. Big kiss :)

Valeh said...

I know that there a lot of people (like me) that from the other side of the ocean are reading you blog finding a lot of strength and love to go on in their lives!

You're a blessed mum!
i wish you and your family all the best!
With love from Italy

(I'm reading your blog since about 2010)