Update: Max had to go back on oxygen today do an increase of "wetness" around his lungs. We aren't sure what is causing the fluid buildup because the doctors make way too many changes all at one time. You would think they would learn from the first 10 times that they have done this. Despite my concerns, they decided to give him another dose of Lasiks to see if it will pull some of the excess fluid off. It didn't work the first two times they did it, so I am not expecting it to work this time around either. We'll see... I hope to be proven wrong!
My Thoughts: I am a blubbery mess right now because I feel like I just can't do this anymore. I am so tired of hearing bad news, I am tried of having to driving 30 minutes EVERYDAY just to see my son, I am tired of worrying about finances, I am tired of being tired, I am just tired of how our life is going right now. I am ready for things to start moving in the right direction and to STAY in that direction. I am willing to lay on the operating table tomorrow to give up my kidney if it meant that all of this would go away. When I don't feel like I can do it anymore, Max looks at me with his beautiful blue eyes and he gives me the strength that I need to make it through another day. I am so proud to say that my son is my hero.
Our friend Brett says is perfectly:
Max,
How about me and you get together some time? I would love to play toys with you. But I have to be honest, I have ulterior motives
I want to learn about how you get the courage to not shut down, to keep going in the face of impossible odds. I want to know how you overcame all that you did with "a smile on your face". I want to know how you were able to do what you did without anybody telling you how.
These are all things that everybody can do, we just sometimes don't do because we THINK we cannot or we don't think we should.
Thank you for showing us that life is worth all that it has to offer. And that the crosses that we bear in life can only make us stronger.
They say, "Actions speak louder than words". You haven't said anything yet and you have already taught me so much by your actions.
Can you show me more? I really want to learn.
I always wonder, why do things like this happen to innocent little babies who did nothing, absolutely nothing, to deserve any of it. Why is it that Max had to have a stupid flap of tissue block his urine output that caused him to have tiny lungs and two kidneys that don't function properly. I look at all of the babies laying in the NICU helpless and I just cry. I cry for them and for their families. My heart aches when I see a new admit come in and I see their mommy and daddy standing back while the nurses hook their brand new baby up to a thousand machines and a crowd of doctors come in and surround the isolette to exam what is going on. The look on a parents face standing in the background is forever etched into my memory- the look of fear, worry, heartache all rolled into one. No one truly knows what it's like until they live it, and I wouldn't wish living this on my worst enemy.
I was watching Oprah yesterday and this particular show was about children that defied the odds and survived life threatening diseases. There was one family that was told that their little boy Eliot wouldn't survive past day one due to his disease. His parents knew that it was going to be for a short period of time, but they look him home on oxygen and with a feeding tube. Eliot lived for 99 days before God decided that it was his time to join Him in Heaven. Eliot's mom always told herself that she would be sad later, that she had to enjoy the time that she had with her only son. What she said has inspired me to live for what we were given. Max is a miracle in itself and we have to remind ourselves that we are truly blessed that he is even here with us today. The odds were very much against him, but he fought and stood strong. His mission is far from over and he inspires me to be sad later- to live my life to the fullest and to love the hand that I was dealt. Go to http://www.oprah.com/media/20081001_tows_99balloons and watch the inspiring video that Eliot's mother and father created for him. Eliot and Max should be inspirations to us all for their willpower and strength to survive- whether it be for 99 days or 99 years!
3 comments:
Max is amazing and strong just like his parents. Not everybody can handle the NICU and I feel we are truly blessed to have such miracles. There is a poem I will have to find about being a NICU mom and post it for you later.
Max is destined for greatness these little guys don't fight as much as they do for nothing. Hang in there and I'm here if you ever want to talk. We lived the NICU life for 3 months so I can't somewhat comprehend what you are going through.
Denise
Matilda&Leon
A long time ago when I was struggling with a particular facet of my life, my dad gave me a card on which was incribed a poem.
I committed the poem to memory and it goes something like this:
When things go wrong, as they sometimes will
When the road you're trudging seems all uphill
When the funds are low and the debts are high
And you want to smile, but you have to sigh
When care is pressing you down a bit
Rest if you must, but don't you quit.
Life is queer with its twists and turns
As every one of us sometimes learns
And many a fellow turns about
When he might have won, had he stuck it out.
Don't give up though the pace seems slow
You may succeed with another blow.
Success is failure turned inside out
The silver tint of the clouds of doubt
And you never can tell how close you are
It may be near when it seems afar;
So stick to the fight when you're hardest hit
It's when things seem worst that you mustn't quit.
Another saying that sticks with me that we all know is that is always darkest before the dawn.
We on the outside looking in cannot begin to fathom the ordeal that you have been through mentally and physically, but can only admire your determination and mother's love for her son.
In the grand scheme of things, Max is oblivious to all of this. It is the parents, grandparents, and friends who have to suffer through these many, many, frustrations and setbacks.
We can only wish you the best of luck and strenth in persevering.
Dave Schabell
BBHS
Max is only strong because of the parents he has. He has fought hard, because his parents fought hard for him. Things seem impossible and overwhelming, but God will hand you only what you can handle. You have inspired many yourself with your will to give Max a chance at life. Most people would take the easy way out and not fight for what is important. Just remember why you are fighting as hard as you are, and that you have an army of God's soldiers standing behind you praying your prayer! Keep your faith, and God will lead you!
We pray for patience & strength.
We pray for healing & peace
We pray for all those little babies you described
But most of all we pray for Mighty Max a hero to all that he gets stronger & stronger. Keep fighting little man, you're a survivor!
Big hugs & kisses Max (mommy & daddy too)
Love
Michael, Dominique, Jake, Brady, Hannah, & Zachary
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