The perfect balance

The perfect balance.
In our house there is not a perfect balance of anything.
We have three boys and two girls. Two cars one driver. Three kids two parents. And three beds yet everyone crams into one. We also need to keep Tim’s blood sugar in the perfect balance.
The optimal numbers are 60-120. Yesterday Tim woke up and was close to optimal. Then by noon he was having a seizure. His blood sugar was 36. Ari and I tried to give him sugar but he was beyond being able to chew or swallow. That’s where that horrible glucogon shot comes into play. Secretly I hate to love that shot.
The pictures of it do not do it justice. I swear in the heat of the moment that shot looks two inches long. I have to push the liquid into the powder vial and mix it,draw it back and shove it into his body. It wouldn’t be so bad if the needle wasn’t so thick,or Tim wasn’t so thin.
He is only 150 pounds on a good day. So when I have to give him a shot,all I can think about is how thin he is,and the direction say put into muscle. I am not picking on him I swear,but he has no muscle. Plus when he is seized up his muscle( what he does have ) are so tight I am afraid that he will jerk and it will break…. Talk about a whole two seconds of heart attack level stress.
The pharmacy only allows one shot at a time,and it has to be Doctor approved. We called the pharmacy and asked for another. They said two days to get approval. We have two days of not using that shot. So I stocked up on sodas and other things he can use to bring himself back from being low.
I went home and we took a nap on the couch with the kids. When I woke up Tim said he was still tired and wanted to lay down for a bit. So I started to make dinner. One hour later I went to tell him dinner was ready,and there he was. He was covered sweat.his muscles tight and he was doing that awful moan, it’s eerie and reminds me of a horror movie.
I had nothing to give him. All my preparations,the sodas,candy,sugar cubes. He couldn’t use them. He was mentally gone. I was too late. I scrambled for my phone and called the paramedics,begged them to hurry. His blood sugar was 22. By the time they got there it was unreadable.
They gave him d50(a form of dextrose),and put oxygen on him. He laid there seized up for half an hour. We waited for his blood sugar to rise. When it finally did he was still not coherent. I tried to help them get him to answer. He was still gone. All I have read,all I have learned, coming down to one moment. If he is too low for too long he can slip into a coma,and become brain dead.
I kept telling him, not today, I am not ready for this to happen today. The paramedics took Tim to the hospital,as I loaded what was left of us into our car. When we got there they didn’t let us see him for an hour. Finally after an hour of listening to Ryker beg to runaround, and Ari beg to play with my iPad, they let us see him.
He was okay. The doctors are apparently baffled as to why he didn’t come too right away. But I know. I have already known this since before we married. I always figured this could happen,and now that it has I am afraid next time could be worse.
We all crawled up onto his bed while they did some tests,and made sure he was able to be released. Little Lincoln sat in his car seat and cooed. Tim told me he could hear us, but tried to respond but he couldn’t. He could hear the paramedics say brain damage,and talk about our family. The paramedics know us well.
I didn’t lose him that day, but this fight for his kidneys,and fight to keep his blood sugar lower then what we are used to is making it hard to keep him. The dramatics that come with diabetes is more then a girl can handle sometimes. Who would have thought Tim was the drama queen in all this?

Bucket list,to be amended

The bucket list
Tim needs to get through this.
We need to get him a new kidney and pancreas.
Ariana,Ryker,and Lincoln need Tim. Period.
Ariana is eight right now. She is in the third grade this next year. She has yet to master many things Tim has wanted to teach her. Like doing an oil change,or rotating tires,or dropping a gas tank to change out the filter. He hasn’t taught her how to spot the liar in a boy,or how to fly a kite to perfection. She needs Tim to be here.
Ryker and Lincoln have yet to learn those things plus how to ride a bike. They haven’t learned to fish yet. Lincoln hasn’t even rolled over….not that I expect him to but for the sake of the bucket list it was worth mentioning.
This spring we planted a garden and some fruit trees. We have a grapefruit,peach,nectarine, and orange tree. Tim wants to eat the fruit we grow. We planted corn,potatoes,tomatoes,spinach,lettuce,cabbage,carrots,raspberries,blueberries and many other fruits and vegetables. Tim wants to taste it all.
He wants to be here when Lincoln is walking and talking.
When Ryker breaks his first girls heart,and when he gets his heart broken.
Tim wants to be there to hug Ari when she gets her heart broken,and to track down the fool who did it and make sure he is limping,even if it just slightly.
He wants to hear Ari play the violin which she doesn’t get until Christmas.
He want to take me to Disneyland for our 10th anniversary in 2015.
He wants to take me to Vegas.
We want to go to Louisiana and eat the foods,and smell the smells,and dance like fools.
He wants to stand and clap like an idiot for all three graduations.
He wants to cry when Ari gets married.
He wants to dance with me,for all three of their weddings.
He wants to take us to Hawaii.
He wants one more chance at a life he has thrown away.
He wants to help the kids build their cars.
He wants to take the kids to the snow.
He wants to never miss one minute of their laughter,or tears.
He wants to watch his kids grow up and have babies of their own.
He wants to have empty nest syndrome with me
He wants to grow old
He needs this.
So do I.So do my kids.

Not our last Father’s day.

Fathers day this year I could not help but feel the similarities between my mom and I. October 11th 2001 my dad Vincent was diagnosed with brain cancer. He left us November 22nd 2002. Leaving my mother who was barely starting out her life with him and had plans of traveling the country and going to dog shows ,so he could do his ridicules golf clap when her dog won. He left my brother who was barely 13, and still playing Pokemon. He left me at 17, right when a little girl needs her dad to tell off boys.
My dad struggled for 13 months with radiation and seizures. After they did the biopsy to confirm it was cancerous, which to me was complete ridicules, it’s a tumor in the brain folks. Take it out or kill it. But they couldn’t. He passed away any way. People told my mom to have hope. People told my brother and I to have hope. Honestly I think that is all people said to Matt( my brother) and I. We just sat there bright eyed and lost while everyone spoke with mom. Which is perfectly fine because we were children and honestly if someone started really talking deep to us they might have worried a bit too much at our massive innocence.
We had the picture perfect life my brother and I. Dad worked weekends to afford the two week vacations we took every year. My mom worked hard to provide us with our extracurricular activities. We played in the back yard with our dogs. Matt and I always had anything and everything we ever wanted. Everything but a picket fence. If there was a possibility that my dad could have one upped the neighbors and built a white picket fence ,he would have.
October 11 th our world crashed around our feet. Leaving us with the rubble of the fact that they had a daughter,who was scared of being ugly and terrified of boys. And leaving a shy 13 year old boy who was more innocent then most. My mother, who I had always thought was the strongest woman on earth,cried herself to sleep. My dad changed from this God fearing,loving man who screamed Shit in church….yes he screamed it in church. I cannot help but think that was the only highlight of those horrible 13 months. Mr.Perfect Vince said a bad word,not in the quiet confines of his home,but the solid walls of the church.
Everyone thought he was the greatest,most funny guy they had ever met. He did jam street for the kids in bad neighborhoods, he helped the children’s pastor on Sundays. He golfed with all the ‘uppers’ of the church. But he flipped his lid if Matt or I walked in his freshly laid beauty bark,or wore our shoes in the house. He would literally sit and scrub were we stepped in the house. He was a bit obsessive.But we love him, my mom relied on him. He promised her,like Tim did, to just be there. But he left.
My mom came to visit us, originally to meet Mr. Lincoln. But when we received the news on that Monday prior,I think our plans changed a bit. Yes she wants to spend time with my newest addition,but she also wanted to make sure Tim was ready to fight. Not that she or I don’t trust him,but his track record for this kind of fight is not very convincing.
In 2004 Tim lost his right eye to blindness, his car literally broke a piston, he lost his job, then he lost his fight. At this time I was a silly 18 year old girl who had just had a baby and was infatuated with his blue eyes and blond floppy hair. I mean come on he was 25 with a sports car,a job with the word supervisor, a history of amazing ventures, and his own apartment. He was gold to me. I was hooked.
That was about two months into us dating, when he lost everything other then the silly girl who had just had a baby. His depression hit so hard I think his body turned on him,his blood pressure dropped,and his stomach couldn’t digest food. I thought he was going to die. He made it though. He started to fight when he realized I wasn’t going anywhere,and I loved him even if he was pushing me away.
Then two years into our marriage he lost his other eye. The doctors called NLP. No light perception. I can put a fog light up to his face, turn it on,and he doesn’t know the difference. He lost his mind that year. He stayed in bed,and let the depression take hold. After two years I told him to get out,get up,get dressed,and stop acting as if you have nothing. I think he had forgotten that he is loved.
This time though,faced with bad news, Tim is shining. He has three kids who he wants to grow up with. He has me who has learned to cook a good meal once or twice a week. He has a mortgage and we promised Ari she never has to move again. He has to fight. He knows this.
My mother lost her dad also. So here we are two generations with out our earthly fathers,celebrating my children’s dad. June financially killed us. We do not have much of an income anyway, but you add extra trips to Phoenix,and a circumcision, a higher water bill,and more electricity, and we are sitting pretty in our house until payday. So for fathers we didn’t go running to sears for the newest tool. Instead we bbqed some steaks and made potato salad. Which for Tim is the greatest gift ever,next to tools.
I felt bad that possibly the last fathers day I couldn’t go and buy him the new face razor,or a new set of sockets that he would eventually lose. I wanted him to know how much he means to us. Honestly his new diet restrictions have helped us in the lackluster attempts at fathers day. He is only allowed one serving of red meat a week,so steak was a great idea. Tim is that guy who always says he doesn’t want anything. He was happy to just sit with his family and eat good food. He is amazing.
We did end up getting him some new shorts,and my mom bought him licorice. So he wasn’t completely with out material presents. That is my favorite thing about Tim. Even of he wants a Lexus,and for us to have the coolest clothes,and all the new gadgets that come out, he wants it for us. He is happy with just a warm edible meal. My cool,sports car driving, always has his hair to perfection man is way more simple then I had ever imagined. He gave up everything for us,so we can have it all,so we can be happy.Our happiness is his joy.
Fathers day, the day most dads get a tie,or a wallet to leave empty in their pockets, or a new wrench. Fathers day when most dads want to watch the game. Fathers day,and my hubby is thrilled with just listening to kids laugh. I could not have asked for a better husband. He is the best father. This will not be our last fathers day. It just cannot happen. Not to three generations. I hope.because there is always hope.

Numbers

So that anyone who reads this can follow more of what is happening with my husbands body I have decided to put this situation into numbers.
Tim was diagnosed at age 6 with diabetes. He is now 33. His hemoglobin A1C is last known to be 11. That means that in a three month period his blood sugars have stayed around or been an average of 269. The blood glucose needs to be between 60-120 to be healthy. The list for transplants require him to be below 8.5. That means he needs to have a three month average of 197. Which although is still high,it is considered managed when it comes to a diabetic. We have 6 weeks to drop the A1C down 2.5, which shouldn’t be too difficult in a sense.
Because of the fact that he is a brittle diabetic he tends to teeter totter fairly rapidly. For example, his blood sugar has been known to drop down to 34 and he will then get his glucagon shot,and then one hour later he will be in his high 300’s. So then he has to compensate with insulin. Which because of his kidney failure can cause him to store the insulin and drop him back down into the 50’s. It is an all day event. Sugar,insulin,test,sugar, insulin,test.
Now I am not Tim,so I don’t know how he feels when he is low or high. But I do know what it looks like from the outside. When he goes low,it is the most scary thing for a wife to go through…..so far. He will start to sweat,and it is like his brain in numb. He cannot articulate,he cannot process thought. Then he gets what the diabetic world calls the shakes. But it is more like a seizure. Tim is stubborn even then. He tries to move around. So I have to watch his head,and make him hold still. Then he just stops. When he stops this is the worst. He could go permanently comatose,so I have to act quickly and administer this huge shot called the glucagon shot.

As scary as the going low is,being high is what is scary now. When he is high proteins and sugars are spilled into his kidneys. This is too much work for them. They are only functioning at 25%. So that means in his short life he has wasted away 75% of his kidney function. Normal people on average lose 1% a year. So by the time you are old you have a decreased kidney function anyway,but not when you are only 33. Diabetics with poor control,or brittle diabetics lose roughly 15-25% a year.
Tim is stage four kidney failure.anything under 29% to 15% is stage four. Within one years time Tim will be closer to 10%. Ten percent is stage five. As in no going back,plan for the inevitable. Not that you can go back with kidneys anyway. Once they are damaged,they are damaged. You can slow the process,but you cannot regenerate them.
Things such as high blood pressure,high A1C,and potassium can hurt the kidneys. His blood pressure is high also,but it is managed. His potassium is high,and he needs to get it down and will probably be hospitalized because of it. High potassium can kill you alone. Normal potassium needs to be 3.7-5.2. Tim is 5.7. Not that much of a difference but with his kidneys and his blood pressure it could be very bad. Too much potassium can cause a heart attack.
In order for Tim to be put on the list for a kidney and pancreas transplant he needs to get his potassium down,his A1c down and keep up with his blood pressure medication. With the level that his kidneys are at we are not only fighting all those numbers,his kidneys are acting like the villain in all this. They hold the potassium,the sugar,the protein,the insulin. We are fighting his body right now.
Now let’s talk statistics. On average it takes 6 months from the diagnosis to be put on the list. That would mean a then kidney functioning number of roughly 17.5. Then about 8-36 months of waiting on the list. So the odds are not in our favor. But we have faith.
The good numbers are, Tim is 33, with three amazing children. We have been married for almost 7 years. We have gone through 16 surgeries together. Moved one state together. Celebrated 25 birthdays as a group, given birth to two boys together, bought one house together. Spent about 3000 nights in the same bed. Together our numbers look great. So that is what we are focusing on. Our numbers beat any number the Internet or doctors want to tell us. Plus we have faith in one God. Our family of five can beat any statistic. We have fought for each other ( and against on occasion) through so many battles. We can do this. We have to.

Stages

It finally started to seem like a reality today with Tim. He is a very stubborn man. He would negotiate prices at a gas pump if I let him. One of those qualities I hate to love about him.
We reviewed the symptoms to see if he had any. Some he had ,most he doesn’t yet. For all the different stages the symptoms are the same. So we couldn’t try to bring hope to ourselves by tricking ourselves to think he was only stage 3.
For the past year we have had this ongoing argument. I will say something,and he will respond,then ten minutes later he acts as if we never spoke. That is a symptom. Forgetfulness. He does it all the time. For awhile I thought he did it to annoy me.
Our relationship is odd. We take great pleasure in annoying each other. The plus side to it is,we never are actually mad,and it is over fairly quickly. The only one I couldn’t get over was the forgetting conversations. He is blind so that alone makes me feel invisible.so when he would ask if I ran some errand that I was certain he remembered, I would get annoyed. Now we know it is part of what doctors call ‘the process’.
We finally told Ariana that we are praying for surgery that will cure him. She doesn’t know that without it he will die. She just knows that someday,with prayer, Tim won’t have to be a diabetic anymore.
We woke up at 3 am to Tim having a diabetic seizure. This is almost a routine. Ari refuses to sleep in her room so she sleeps in our room on a sleeping bag. Ryker sleeps on the bed still, along with Tim ,Lincoln ,and me. So when I say we, I mean the whole family.
Ari and I are a great team when it comes to Tim’s seizures. I grab the glucagon shot and she grabs the tester. While I give him the shot she does the test. Then she tends to the boys while I run around grabbing sodas and sugar cubes. We are very well trained in the ways of diabetes. It will be nice if 3 am wake up calls are out of the picture.
We have six weeks to get his hemoglobin A1C down from 11 to 8.5. So him going low,as scary as it is may have helped. A 8.5 hemoglobin means his blood sugar needs to stay below 195. This is pretty hard to attain sometimes. Not because he is out of control,but because he is so brittle.
Being brittle is another symptom. Brittle in the diabetic world means that you can go low,then shoot straight up blood sugar wise fairly quickly. We had no idea that it was a symptom. His GFR is 25%. That means his kidney function is only 1/4 of what it should be. The kidneys and diabetes go hand in hand. Now that his kidney function is so low that means his insulin can have the tendency to stay in his body longer. What that means is 3 am seizures.
Diabetes is such a teeter totter disease. He does insulin to keep his blood sugar below 195. But if it stores in his kidneys the he can drop below 60 which means he is on the verge of a seizure. So we need to keep his tester,sugar cubes,and insulin at arms reach.
The other fun part of all this is I get to learn how to cook completely differently. He needs to stay away from carbs,potassium, protein,and sodium. Also he cannot have too much fluids. So… This will be fun. I can’t really think of too many foods he can eat.
He goes back to the kidney specialist in July. We hope to be signing him up for the list by then. Until then we a going to meet with a nutritionist to see what we can do to help him stay level. It is all we can hope for. With kidneys there is no going back.
Tim has finally accepted he needs surgery. He is scared. But not for himself,he has had so many surgeries this is just another scar. Tim doesn’t want to leave us. He feels like he has wasted his life in ways. I have no idea how to tell him different. So I just had us all pile up on him and just sit there, most of the day. Aside from Ryker, we just sat with him all day. It was nice. I think he needed to be shown how we need him too.

I can’t do this alone

Day two, thats what I call today. It is the day after we received the devastating news about Tim. Lincoln is ten days old and I had to take him to the doctors to get his circumcision. My new little baby gets his grown up owie. I never do well with things like this.
Since the day Ryker was born Tim is the one who held him during shots. He even held Ari through most of hers. I have only had to deal with it twice alone. The fear that rips through me every time is enough to almost make me bolt for the door. I don’t do the baby shots,Tim does.
They do the circumcision differently with this doctor. Quite honestly I think the idea of how they do it is amazing! They put a ring on him and it just falls off within a week. No sharp knives by my babies ‘area’. No blood loss,no oops I flinched.
While at the doctors they put the numbing cream on him and had me wait. In the room next to us there was a baby getting some shots. The scream was something I prefer to avoid,even if it is not my child. I held Lincoln close and started to worry.
He is only ten days old. There are numerous shots he will need. Ari will need more,Ryker will need more,and Lincoln has barely began his life of getting shots. I don’t do shots. If Tim goes,who will do the shots with my babies? Who will convince Ari that she will make it? Or hold the boys while they get theirs? I can’t do it.
This may seem selfish,but I can’t do this alone. I just can’t. Tim promised me he would be okay. He can’t just up a leave me. That’s not fair. This wasn’t in my plan. I know I cannot be in control of everything. This is not my plan to control.
When the nurse came to take my son Lincoln to put the ring on him I started to worry. He started to cry immediately. I just let him go. It seemed like forever listening to his wails. I paced ,shuffled the magazines,and every time he stopped I would press my ear to the door hoping to hear the nurse walking him back to me. It took forever.
There has been an ongoing joke between Tim and I since he went blind in 2007. We say that his only exercise is from the bed to the couch to the bed. In all honesty he is more then that. He is the backbone to this family. Who will put the light bulbs in when they go out? Who will fix the lawn mower? Who will make sure I eat breakfast? Who will hold my children when mommy can’t?
We need this kidney/pancreas. We need Tim. I need my husband. Not just to fix things,but he is the one who shares his blanket with me when I am cold. He holds my hand when I cry. We need him,and he needs this transplant.

Unexpectations

Life tends to throw you curve balls. Like, when I got the call at work from my husband telling me to hurry and come to the hospital. He had contracted MRSA and they said he might lose his leg. Or the day he proposed I was on my way out to move back with my mom. Then there is the day he called me from a 7-11 and he said he could no longer see to drive. Our life has been filled with unexpectations.
Tim and I have always considered ourselves as little people. No,actually I am lying. Tim has always thought we are the hot shots,while I thought we were the peons. we live a very modest life. We have a nice home that is filled with more toys and love then furniture. Our walls display the hand marks of Tim and the children. Our kitchen is always full,but we tend to never have enough clean towels. We don’t have much in regards to material things, but our house is filled with what’s important.
Nothing thus far has really stuck with a plan. We tried for four years to have a second child. Tim and I counted days,took tests,and tried to the point where trying was no longer fun. We gave up. God had given us a gorgeous little girl,Ariana Skye. She is well behaved, kind,empathetic, and filled with this joy only kids seem to have. She is perfect. When we finally gave up on the idea of having a fuller house, Ryker Vincent came along.
That March we bought our home. It fit all four of us,had clean carpets, clean walls, and a very open floor plan. We couldn’t be more happy. I spent my pregnancy painting the kid’s rooms. Setting up the house with our meager furniture.It was glorious.
A few months after Ryker was born I had realized I was not satisfied. I was angry that a house ,two kids, and Blind, diabetic husband was too much it seemed for me to handle with ease.I had postpartum depression. Not in the way that I was going to hurt anyone,or I regretted having kids. In the way that with a mortgage, two children,a blind husband,and cars that seem to always need tires or an alternator was too much.
Odd since in reality my life is simple. Tim is on disability so our bills are paid,and we can afford to eat. But the little fun things never were in our budget,and children have expectations. I felt as if I couldn’t take care of my family the way I should. My insecurities got the best of me and I was mad. Lived actually. I would watch my friends and the ease they seemed to have to supply life making memories with their children and I wondered why my children had to go without. I couldn’t sleep,my anxiety got the best of me.
Then the minor OCD tendencies came into play. I had Tim smell the milk every time I poured a glass, he had to smell the meat even if I bought it that day. Everything was on my shoulders, if a bill was too high it was my fault since I do the finances. If the car broke down,it was my fault since I am the only driver. I started to have panic attacks. I would scrub potatoes until they had no peel just in case they had some germs. It was weird, I couldn’t change my own son’s diapers. I couldnt even do what every other mom in the world could do.
In August of Ryker’s first year I landed a great job. Well at the time it seemed great. I had the prospects of medical and dental in three months,and a weekly paycheck! We could go on vacations and take Ariana to cheer practice, buy the kids the things they wanted. I was living the dream. Two perfect children,a husband who literally loved everything about me, and a house that fit my little family.
Tim and I were on cloud nine. The first week of October in the midst of planning Rykers first birthday we were tossed another curve ball. I was pregnant. Not even one year after giving birth to my son I was expecting again. We were in shock. No, I am lying again. Tim was thrilled,I was scared. I had just landed a job that made it so Disneyland was attainable. Now all that “extra cash” was going to go to one more mouth, more diapers,and tiny socks.
Everyone who knew me well enough let me go through the motions of disbelief. How can I support one more? I thought God didn’t give us more then we could handle. I am in the midst of getting over my depression and we are pregnant again. How could this happen? I know what you are thinking, I know how it happens. It is just we had tried for Ryker for years and we thought he was a fluke.
We silently went through the pregnancy. I didn’t pick a theme,or buy anything for the new baby. I thought if I could just through the pregnancy everything would settle the way it should. In January they had lay offs at work. I thought I was safe. They couldn’t possibly fire the girl who was pregnant could they? They could apparently. I felt ashamed. If only I had not gotten pregnant not only could I take the two older kids to Disneyland,but I could buy them a souvenir!
Tim as always was more then supportive. It sickened me. How can he always look at life and see the possibilities? Didn’t he know that less money was not a good thing? He knew,he worried with me but instead of worrying outwardly he held my hand and let me grieve.
May was approaching, my new son Lincoln was going to born soon. I finally cracked. We were at target to look at baby clothes and I had a meltdown. I hadn’t enjoyed the pregnancy, I didn’t buy him his going home outfit. We hadn’t bought him one single thing that was just his. I had ignored him. I felt ashamed, I cried through out the store and filled our cart with things for my new son.
Lincoln was the easiest pregnancy,and delivery,and the weeks to follow after we was born were so quiet(except for the fact that Ryker found his voice and chose to scream all day). Lincoln was perfect. Big round eyes and little bald head. I love him. I am so glad to have him in our life.
June,ah June. I will never forget June 11th. We piled everyone in the car and danced all the way to Tim’s kidney doctor. We sang songs and laughed. Probably the most fun I had had in over a year. I got my groove back. I was the mom I used to be. Tim held my hand and we laughed about the silly things our wonderful children do. Ariana sang too loud, and Ryker was almost a good passenger.
At the appointment they crammed all five of us into a room. Luckily I had this app on my phone that made farting noises to entertain Ryker so we didn’t have to be that loud family everyone hates at the dr’s. When the doctor came in she was very kind. But the words were not. Terminal,kidney failure,one year,kidney and pancreas transplant. Words just seemed to rush out of her mouth. While the kids played quietly Tim and I sat silently holding hands and nodding.
On the way home we tried to keep up appearances. Ariana is very smart and if we show any signs of distress she will pick up on it. So we played the game of silly stupid happy family. She still doesn’t know. For that I am grateful. How do you tell your children that daddy might die? You don’t, you sit in silence and pray.