From Micro-Preemie to Man-Child

Like most parents, today the Big He and I look back at where we were on this day 15 years ago. That’s because today is our son’s birthday. We celebrate every year with gusto because we came so close to not having a happy outcome. Most know the story so I won’t bore you with the details…okay maybe a few. Our boy came into this world 16 weeks early. He weighed 1 pound 13 ounces. He had 2 surgeries within the first 3 days of life and was in the St. David’s NICU, ATX for 104 days. We were told in the early days that he would most likely not make it and if he did there would be deficits due to his early arrival. He made it. He has thrived. When people ask me how can I have so much faith after all the things we have been through, I can’t see how you couldn’t. Our son is here despite all the reasons he should not be here. Not only is he our rainbow baby, he is our miracle baby.

He continues to amaze us. He is growing into a loving, compassionate, empathetic young man. Oh don’t get me wrong, he is still all teenage boy with the hormones and attitude and smart @$$ mouth but deep down under the stink and unsettling amount of hair that grows on his face, he is an amazing kid. The Big He and I are very proud of who he is becoming. He is someone that does not worry about what other’s think about him. He want’s to always help his friends and has a hug waiting for me or his dad if we have had a bad day.  He could care less about social media (we force him to post a few Instagram pictures). He does march to the beat of his own drum, which is usually playing some sort of country music from Kevin Fowler to Johnny Cash.

Happy Birthday Baby Boy, We love you more!

 

 

All my love,

The She

 

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How YOU doing?

How many said that in Joey’s voice from Friends?

Seriously, “How are you doing” is a common question these days. I will be honest, for us that is kinda a trick question. Do you really want to know how we are or is it a question you ask because it is the polite thing to do? Most of you that know me (the she in the family), know that I am an open book.  I like to quote Popeye, “I am what I am”. So when you ask, I will tell you.

These days we are really just in survival mode. There is so much for us to wrap our minds around that it is very overwhelming. There is all the information given to us by the doctors regarding Alpha Lima Sierra on what to expect, drug trials, etc. The he’s military service may have had a part in this diagnosis as the rate of military members that are being diagnosed is at a higher rate than the general population (especially for those that served in the Desert Shield/Storm). In fact, the VA considers Alpha Lima Sierra a service connected disability. So there is now all the VA information we need to understand and digest. There are the things he is doing to ensure that the little he and I will always have his words to guide us and make sure we are taken care of and there are the hard medical things we need to get on top of before decisions need to be made. All of that and we must still maintain some normalcy in our home for our little he which includes things like work, school and baseball.

Do we have good moments/days, absolutely! But please don’t think that it means we are accepting of the situation or that we are just that strong. We don’t and we are not. It means, that we are having a good moment or a good day. Any strength we show is due to our love for each other, the support from our family/friends and our faith in the Lord.

Like I said above, I am an open book. While some things are hard to hear and many a tears are being shed (including ours), this is our new reality. It’s not always pretty, but it is what it is.

So how are we doing? We just got done with a good weekend. Good time spent with each other, the house kinda got clean and he did the laundry. So right now, we are good.

Love to you all,

The she.

Whisky Tango Foxtrot!

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.