I especially worry when he becomes sick. He has had a cold the last several days and although he is holding his own right now, there are always thoughts that run through my mind....."Will he end up in the hospital?", "Will this turn into pneumonia again?", "Is this truly just a cold or is this coughing due to Congestive Heart Failure(CHF)?" I don't like thinking this way, but when you have spent months in the hospital with your child and they have almost died a few times, you honestly do have these thoughts!
Gavin's cold this time around hasn't produced a fever, which is a good thing, because when he gets a fever he usually starts having seizures again. But, since his main symptom is coughing and no fever, I can't help but wonder if the coughing is due to CHF and not just a cold. Gavin's heart has a significant leak in it's Mitral Valve and this can cause fluid to build up in his lungs and, in turn, cause CHF. Is his cough due to this? These are thoughts running through my head the last couple of days.
I was once told by a doctor that Gavin's heart condition was so bad that they didn't think he would live to come home again. And, if he did live, he might never live another day of his life at home, but instead have to live in a hospital for his remaining days. I told the doctor that Gavin WOULD LIVE and that Gavin WOULD come home again, because I wasn't going to have him live out his remaining days in the hospital and that I would care for him at home until that day came!
Obviously, God had the same plans that I had for Gavin, because he is alive and at home! I am very thankful for this! BUT.....I also know that Gavin's heart is not good and that an illness or CHF could put him back in the hospital or take his life at any time.
I HATE having to worry about this and having to bite my nails wondering if this will happen soon?!
I HATE feeling like there is always something bad just over the horizon and feeling like I have to be prepared and look over my shoulder at all times!
I do not constantly feel this way, but when Gavin or his brothers get sick, these are feelings that I have. I sometimes wish that I could go back to those days of innocence, when I didn't have memories of hospital days and near death situations. Of course, then I wouldn't have this precious little guy! And, he is definitely worth all the worries!
I've been reading a book called, "You will dream new dreams" by Stanley D. Kline and Kim Schive. It has been very therapeutic for me. It has stories of parents and their special needs children. If you have a child with special needs, I highly recommend it! I'm only half way through it, but so far it is great!
Here is a quote from the book that really touched me:
"Deep, abiding sadness is my constant companion, as is unending joy. Sadness for what will not be, and joy for what is - life and all the good things that can be shared, like love, happiness, friendship, and peace. There are days when sorrow weighs heavily and, thankfully, days when life seems quite typical. Typical. I no longer use the word "normal." What is normal? Normal has nothing to do with my life. I am the parent of a child with special needs."
This quote pretty much sums up what I'm trying to say in this post! Life with Gavin is full of worries, and sadness that will probably never go away. I will live in worry until he dies and I will live is extreme sadness when he does! This doesn't seem like a very promising life to live, does it? But, the truth is, Gavin has brought more "life" to my life than any other circumstance ever has! It is so difficult to explain, and you truly can't understand my feelings unless you are walking in my shoes. These shoes are very beat down, but they are also helping me to run and jump with extreme joy!
Gavin has helped me to see that my life may be full of worries and difficult memories, but also that "Life is Good" as well! This boy is here for a reason and however long his life will be, on this earth, it is a life that is so worthwhile!
"Come now, you who say, "Today or tomorrow we will go to such a city, spend a year there, buy and sell, and make a profit"; whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. Instead you ought to say, "If the Lord wills, we shall live and do this or that." James 4:13-15
8 comments:
When I read this, I just had this visual of you, walking through life under a bright moon. While you could see, you couldn't see everything around you. Then, Gavin was born and suddenly the sun came out and brightened all your emotions and senses and understandings of the world. You son brought you the sun, and while it allows you to see some of the things that you might not want to see, it also allows you to enjoy and stare in wonderment at all the things you didn't know where there or possible before...
I love you, sissy. (((hugs)))
xoxo Amy
What are his heart defects? I don't know if I ever knew them. Look for weight loss, and sweating, all common signs of heart failure.
Alicia, I am praying that Gavin just has a simple cold that will clear up soon. I understand how you feel every time he gets sick. It is just so stressful looking for all the signs all the time. I am praying, friend.
That book sounds great, I'll have to look it up!
Hugs and prayers...
LOVE the verse today:)
He looks wonderful, praying all is well and it IS a nasty cold!
Oh heavy is the heart that is held by the arms of a loving momma. I hear you and understand each thought that pierces your heart. I remembered my post on bridges Remember this? One thing that I don’t allow myself to ponder on is what my life is going to look like in the near and far off future with regards to Abigail. Even when I began to walk this journey, I would not allow myself to “wonder” and play in my heart the “what ifs”. To be honest I did at various times think beyond the tomorrows, but very quickly came back... for in those moments I went beyond the protection of the gate. My Dad, for as long as I can remember growing-up would always encourage me with “Don’t cross that bridge until you get there honey, today has enough of its own troubles”. Matthew 6:25-34 says, 5"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life? 28And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will He not much more clothe you, O you of little faith? 31"So do not worry, saying, `What shall we eat?' or `What shall we drink?' or `What shall we wear?' 32For the pagans run after all these things and your heavenly Father knows that you need them. 33But seek first His kingdom and His righteousness and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Dad would call me often in the hospital after Abby was born and encourage me over and over, “Don’t cross that bridge until you get there”... I knew God was asking if I trusted Him completely... I wanted to obey; I wanted Him to smile when He looked upon His daughter in this trying situation and therefore prepared my heart to submit fully each time. I want to encourage those reading this to submit your hearts from wandering. Stop at His feet, lay down your worries, what ifs and wondering! Anticipating future troubles by worrying about them today only doubles them. New troubles visit us each day, but so does our Heavenly Father! It is by His grace that we will get through our daily trials during our lives, enduring them, learning from them, being strengthened from the journey, until we enter into His kingdom and glory forever, where we will never again hunger or thirst, where we will be led to springs of living water, where God will wipe away every tear from our eyes! TRUST... Embrace it, for it is so FREEING! Ask yourself, if you trust God for the most important thing ever.... your salvation, how then can you not completely trust Him in your daily trials? Sorry this is so long, don't know how to link in a comment. You are in my hearts thoughts! Stay strong sweet friend, I am praying for you and Gavin our little warrior! (((HUGS))) Tamara ps I would love to give your blog a makeover!!!! :O)
I have read that book and I love it! It sums up every emotion I have felt along this journey with my Peanut.
I hope that Gavin has just a cold and he is over it quickly and easily!
Praying that Gavin is experiencing "just" a cold, and that God will bring him healing soon! So sorry that you have to cope with all of these understandable fears.
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