Thursday, December 17, 2009

Real Life

As you can see, I have been on hiatus for awhile. Life is different now.  For one, I am the Mommy of a newborn and am up every three hours come rain or shine. While he would probably sleep a little longer, I have to wake him because it's imperative that he gain weight and since his heart beats at 140 beats per minute non stop, he must keep his caloric intake up. Which in turn, means there is very little shut eye for Mommy. I am exhausted, I won't lie.  My mind is in constant motion of what to do next, where to be next, who to care for next.  Some days I feel a little overwhelmed. Some days it's hard to fit it all in.  I wish I had a little more time with my older two boys. They miss me and I miss them.  I am going to try each week to have one on one time with each of them.  I hate that they are in school full time. I want them home with me, but it's just to much with Paxton and all of his needs right now.  It's a constant shuffle back and forth from one doctor to the other. It's keeping a constant eye on the clock to see when meds are due and of course a constant eye on his monitor.  I miss the freedom we once had. I guess I knew the time would come where I would mourn for the life we once had. Then I look at his face: (excuse the baby talk in the video, it's what makes him smile)

video
and I realize it's all going to be O.K. This is what is meant to be for our life.  This was in the plan all along and I would say that so far our family has handled it pretty darn well.  It all came as an enormous surprise.  He was then born before we could even wrap our head around it and four days later had open heart surgery. To say the least, this has all been a complete and total whirlwind.  My/our minds have been in constant motion for nearly 3 months now.  So, I guess it's to be expected that some days we will falter. This is, after all, real life.

I am pretty sure that this boy is in love with his Mommy. At least that's what my husband says. It's when I see his beautiful smile that I realize, yes, our life is different. It's full of medications, heart monitors, oxygen saturations, cardiac lingo, doctors visits, insurance battles and the likes.  It's exhausting to say the least, but most days I just pick him up and smell him or lay with him on my chest and I realize that I would do anything for this child.  A-N-Y-T-H-I-N-G! There may be some days filled with tears at the loss of what was once normal for us.  There's no up and leaving. No vacations in our future.  No jumping in the car without packing all of Paxton's things. No date night without constant worry in the back of our minds.  It's a lot to take on.  Yesterday was the first breakdown over this loss.  I went to Austins Christmas play (super cute pics of that coming soon) yesterday and it was the first time I had been to the school since leaving to have Paxton.  I saw a couple of moms that were pregnant with me and their babies were healthy and right there with them.  It struck a nerve I never anticipated.  I was sad because I wanted Paxton to be in his sling right there with me like the others, but he couldn't be because he's sick.  I was sad yesterday. Sad for all of the changes. Sad for all of the things our precious boy has endured and has yet to endure.  So I came home and climbed into bed with Paxton and we both fell asleep together.  It's the best medicine for me. I remind myself that I was put on this earth to be a Mommy and if it means with a special needs baby, I can do that too. If it means shuffling my time and losing some sleep, then that's what I will do.  Somehow, when I just don't think I can keep my eyes open any longer, for these guys I can do it!



My big boys with their BFF Jack. (Wait til you see the ruckus Jack and Austin caused at the Christmas play) So glad they have each other and so thankful to Jacks mom Eileen who continually lifts me up and reminds me it's ok.
Stay tuned for Christmas show drama and ultra cute Pax pics!
Also, I want to send a big HUGE congrats out to Asher. Paxton's heart brother who had serious complications during his second open heart surgery.  Things were insanely touch and go for awhile but by the grace of God it looks like he will be going home for the first time in his life on Monday. Just in time for Christmas! He spent 5 months, all five months of his life, at All Children's Hospital and fought for his life time and again.  If ever you doubted that God is good, may this remind you that he is.  CHRIST mas is coming!  Let's all take time to remember the reason for the season! Those of us who have lived what we have lived this year will always remember. These angel babies remind us on a daily basis!
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3 comments:

Lorena M said...

I'm so glad you finally posted, but I'm also glad you do not have time to post because that means that Paxton is home and your family is complete. You will see it will get better sooner than you know. I know Paxton is still a baby but before you know he will be crawling and then walking so enjoy the baby part and the sleep well that's kind of the same for most babies BUT it's so important for the HLHS babies to eat and grow in time for their next surgery and you are doing the best! I think I would've broke down long ago. I get overwhelmed with my 6 year old daughter and my almost 2 year toddler. Paxton has the best mommy ever and your 2 sons I'm sure have more fun at school than you realize. Love from CA, Lorena Mora

~Jamie Kubeczka~ said...

Oh Jenn, you are in my prayers everynight. I can only imagine the things you are going through and don't blame your meltdowns one bit. In fact, I take them as a lesson to myself. There are some days when I get so overwhelemed with my two, work, housework, and just everyday life- Bills, etc. It can be so exhausting and really wear you down. I love my kids dearly, and everytime I think I am about to loose it, I just stop and pray and Thank God for them. I know exactly what you feel like when you think back how life used to be so easy... I can remember those days as well. Just being able to take a shower by myself, or being able to jump up and go. It's a lot to take in. But just like you, I see there sweet faces and it just melts me! I try to think of how easy I have it, and that there are other moms out there that have it a lot worse than me. Your little boys are so adorable, and Paxton just melts my heart. They are so truly lucky to have a mommy like you. You are such a strong and encouraging women. Keep your head up and always know that God is on your side and there are people out there who think you are wonderful. God Bless and enjoy your Christmas with those sweet boys!

Hailey's Mom said...

Please just remember that you are blessed with actually having your baby home with you. I never got to bring my daughter home from the hospital after 4 1/2 months. She then passed away. I would give anything to be dealing with a "sick" baby rather than mourning the loss of my daughter. Just please keep this in mind. It's a lot easier to have your baby home than it is to mourn the loss of your precious baby.

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