So Many Things To Be Thankful For

NOTE:  This original post was written right around Thanksgiving, but I forgot to post it!  I hope you enjoy it anyway :)

I'm sitting here in another hospital room as my mother sleeps with nothing better to do than take stock of the past year.  From the outside looking in, a person could be horrified by all that we've been through.  Since that fateful day in April 2010 when we found out that our unborn child would have a heart defect and be born with Down syndrome, we've been slammed.  First Jacob, his birth, 3 weeks in the hospital for sepsis and meningitis, then time for his heart surgery, next time in the hospital for failure to thrive, and recovery.

The same week Jacob was finally given a clean bill of health, KC broke his leg in what is apparently the worst possible way you can break an ankle, including both bones, and all the tendons and cartilage in between them.  Now, 9 months later, he has FINALLY given a clean bill of health by HIS doctor.

 In June, the same week KC was allowed to begin working light duty, Nathan had surgery on HIS leg - lengthening his Achilles, and grafting bone to two places on his foot.  The SAME DAY that Nathan got a clean bill of health from his doctor, Elisha broke HER foot in a volleyball game and was out for 6-10 weeks.  Because we apparently didn't have enough to worry about,  there was Courtney's visit to the emergency room because she'd gotten into a bottle of Excedrin PM (luckily we discovered that I'd found her before she ingested any).

Within a week of Elisha's clean bill of health, we found out that Jacob has progressive hearing loss (we're not sure if it's temporary or permanent yet).  A week after that, his blood work came back hinky, and we had to re-test to rule out cancer.  And 3 days after that phone call, we found out that my mother has cancer (ultimately we found out that it is inoperable Stage 4 Pancreatic Cancer). In the last 18 months, we have had no more than 3 DAYS that have not been mired by illness or injury and I do not see and end in sight for a while.

With all that has gone on in the last 18 months, how can I POSSIBLY find anything good in it?  Well, I must admit that I have shed my share of tears, especially as of late with the knowledge of my mother's cancer.  But how can I not see the good in all of this? Dwelling on the bad would literally drive me crazy anyway - as if I need any help!!!

 First off, I have often said that kicking and screaming will do me no good.  It only wastes precious energy that must be used for more important things like caring for my family both physically and emotionally,  and making sure that they know that I love them.

I've been blessed with the opportunity to realize how important each and every one of my family is to me. And because of this, I am so much less likely to take them for granted. Especially with Jacob.  I know that I'll most likely regret it as he gets older, but I spend every chance I get just gazing into his beautiful blue/brown eyes marveling at his perpetual happiness, and resilience. I marvel at his strength of character and of body. I can't help but squeeze him tight whenever I pick him up, and often find myself breaking out into random grins as I watch him grow and progress.  At 13 months old, he is already standing on his own, and has even taken a step or two.  This is HUGE for a child with Downs.  They're supposed to be delayed. They are not supposed keeping up with the other kids their age.

With my mother's new diagnosis, I have the opportunity to tell her how much I love her, what an impact she has made on me in my life, and how she has made an impact on the lives of my children.  Cancer is a horrible thing. But it also enables our family to mend broken relationships, and become closer to one another  - something that would not have happened without such a life-altering event. And its something that my mother has always wanted in our family. I just happen to think this is an awfully extreme way of doing it, mom! :\

I have been blessed with patience.  There, I SAID IT.  I've acquired patience!!! (family joke - NEVER EVER pray for patience!  Things like the last year happen when you pray for patience!).  I've found that the little things don't bug me nearly as much as they used to.  I've learned not to sweat the things that I cannot control.  I can't control injuries or sickness.  I cannot control whether or not Jacob will be able to hear, or if he needs hearing aids in the future.  Therefore, I often find myself saying, "Whatever".  I take what I'm given and I deal with it.  I don't stress over what may or may not happen (OK, I did with Jacob's cancer scare - his blood work came back clean, by the way).  I just roll up my shirtsleeves and and get to work.

I am thankful for less grudges.  I have noticed as of late that those things that would have once hurt me or would have festered into resentment or hatred in the past, now roll off like water on a duck's back.  I don't have the time or energy to hold a grudge.  I say my piece and get on with it.  It's enabled me to hold onto relationships that, in the past, would have been discarded over petty disagreements, or being unintentionally offended. And it has enriched my life with people who touch it in so many good ways.

I look around my house and I see dirty dishes, toys on the floor, unfolded laundry, and a messy desk.  Yes, my house is messy. Every day.  Regardless of how hard, or how often I clean it.  It comes with the territory of  a family of 6.  4 children (1 of which is a human tornado), 2-3 therapy appts per week, doctor's appts, sports for the older kids, driving them to and from school, groceries, church, and working nights till 2 a.m. to name a few.  I could sit in a corner crying because my house is dirty, but why?  A little dirt never hurt anybody.  And I've got bigger battles to fight.  When I look at my dirty home, I know that my time was spent doing more important things: being a mom for my children and a wife for my husband.  We have food on the table, happy, relatively well-adjusted children, a roof over our heads, a job that KC LOVES to go to every day, friends & family who love us even more, and so much more.

Yes, I have so much to be thankful for.

I used to think that your health was the the ultimate.  It didn't matter what you went through so long as you have your health.  But it isn't until you no longer have health that you realize that this mentality is sooooo not true!  What matters most is that you have love, and laughter, an eternal perspective, and friendship.  What matters is that you keep plugging away at whatever life and God gives you, making the most out of every moment, because those moments, however many or few, are what matters - and what you do with them.

Never ever give up.  Ever. Never let life get you down.  Ever. We have been given these trials in our lives for a reason.  I'd surely like to find out what those reasons are so that I can learn from them and move on! But until then, I continue to be thankful.  For life, love, happiness, family, friends, my testimony of Jesus Christ and the life hereafter, forever families, and everything that has gone RIGHT in my life.

Thank you for letting me get up on my soap box.  I think I shall get off now....and get back to work! :)

Difficulty with Jake's Pic Line and Balancing life with other children

Tuesday KC got to spend the day with Jacob while I spent my time with Courtney.  It seems that she is beginning to feel the affects of her parents being gone all the time, so she needed to have some 'normal' time with her mother. 

So, as I was being mom to Courtney, KC got to hold down the fort at the hospital.  He got to be there as they started his pick line - although they didn't finish it.  They tried around 10PM while I was in the hospital but his veins were "slippery" so they weren't able to complete the process and will try again in the morning. His poor little leg looks horrible, but what are you going to do?  If they can't do it, they can't do it.  The problem lies in the fact though that when they attempted to complete the pick line, they damaged the vein making it unusable, and therefore giving the nurses no way of being able to administer Jacob's antibiotic cocktail to him.  No antibiotics means he keeps getting sicker, and with the infections he has, that means death.  So, obviously administering no antibiotics was NOT an option.  This meant that the nurses had to put in a new IV....AGAIN.  And the odds weren't in Jacob's favor. 

Yep, you guessed it...another 1.5 hours of picks, prods, and digging at every available vein on his feet, arms, legs, head, back to his arms, back to his legs, and finally getting a vein to bleed and work in his wrist.  It's just so odd that a little boy who's platelet counts are dangerously low would have such a difficult time with clotting blood.  Hopefully the doctors will be able to come up with an explanation here VERY soon. Until then, we were just focusing on the need for a peripheral pick line into Jacob so that he doesn't have to go through the torture of IV pokes every night.

I wound up staying up with Jacob all night long and finally left around 4 a.m.  He just wasn't comfortable and had tried to throw up at around 1 a.m. so I opted to hold him on my chest all night long and make sure that he didn't throw up.

On Wednesday, we were promised that Jacob would get his pick line first thing in the morning, so KC made sure to be here right at 9 a.m. But by 6 p, when I got there, Jacob still didn't have his line in.  Luckily, the charge nurse went to bat with us and called the internal radiation dept. and go them to agree to do the pick line at 7:30 PM.  I followed Jacob down, met with the 5 people that would be working on Jacob and left my baby in the hands of a very experienced group of professionals.  I went upstairs and waited...and waited...and waited.  Finally, at nearly 10 PM they wheeled Jacob back into the room.  The anesthesiologist informed me that Jacob was "unpickable" and so they opted to put an IJ (interior jugular) pick line into him, which means that it was a bit more aggressive approach to a pick line but had a higher risk of infection as well (Great! Just what we need.  Another possible infection!). But at least he had his pick line which meant no more IV torture! I also discovered that even though he has clotting issues, he really has a problem with lack of clotting - ????  At the location where they had put the pick line in his internal jugular, they had sutured the skin to keep the IV from coming out and put some gauze over the area.  However, 5 minutes after they had left, the area had oozed blood so much that it was seeping out from under the tape and gauze and dripping down his arm.  So the nurses had to remove the original dressings and put a new dressing of gauze on his chest to help absorb the blood.   They had put Jacob on general anesthesia and put a breathing tube on him.  However, the tube really irritated his throat which left him hoarse and with a really raspy sound whenever he breathed. So, again, I spent the night with Jacob in my arms resting on my chest and taking care of him every time he wiggled, whined, or cried. Didn't leave until 5 a.m. so that I'd be home in time to take Elisha to early morning seminary.  Lo and behold, it was snowing as I left the hospital.

I took Elisha to seminary and stayed up to do the dishes, tidy up the house a bit, and take care of Courtney while KC got up, got ready to go see Jacob and take Nate to school. KC spent the afternoon at the hospital with Jacob and was told that Jacob is experiencing some modeling, which means that his skin looks kind of blotchy or like marble.  They seemed to think this was due to poor blood flow and possibly from fighting another infection. They said that they'd be keeping an eye on it. The guy from the Center for Infectious Disease also came in and told KC that they HAD to get the lumbar poke done on Friday to check for meningitis.  KC told him that we were being told that his platelets were too low to do the spinal tap.  The doctor told him that yes, the platelet counts were low, but they were high enough to do the tap, and that basically the benefits outweighed the risks. They needed to find out if he had meningitis because the antibiotics that Jacob is taking now would not fight meningitis and they needed to get him on the antibiotics quickly if did have it.  No pressure.  Jacob continues to breath VERY raspy breaths. They've been going in and suctioning fluid from his throat, but it still sounds pretty bad. Soooo, I'm in for another long night. Luckily, the Allreds are in town and have offered to take Courtney for a couple of hours in the morning so that I can get a few hours of shut-eye.  I can do all nighters. I'm no stranger to them because of my work at AC Bouquet making candy bouquets.  But 3 of them in a row is a bit excessive even for me.  Thank heavens for family!!!! They really are lifesavers! :)