Teach a man to fish

This week, we had a new graduate in the clinic. I am absolutely positive, based upon how I have seen them treat others and how they treated me, that the days before I worked they treated him without accepting him. When he learned my proclivity for being able to teach, he decided to drag me all over the clinic and teach him everything he could find for me to show him. I told my co-worker today that I haven't seen a new graduate as enthusiastic as this one yet.

It was fun to help teach a new graduate the ropes. This kid showed up with raw talent and no confidence. He had had very little clinical time in nursing school, having completed a hybrid bachelor's to RN program where they focused heavily on the didactic and passing the examination board but came up terribly short on clinical time. Yet, despite having never started an IV before this week, and totally bombing his first two days, I was able to walk him through how to start an IV earlier this week and by the second time he was getting it the first time, every time. Today, eager to get every chance for practice he could before his week was up, he started almost every IV in the clinic. He also got them the first time, each time, even on a patient that is a terrible stick for us.

The kid has a bachelor's in biology before he altered and went to nursing school. It's not as if he doesn't have the head knowledge to be a nurse. He just lacks both experience and confidence. His first two days, he was basically left to sink or swim on his own. By midday on Wednesday, he was asking me to please show him every thing. Today, he was doing it all on his own. He kept going on and on about what a terrific teacher I am and how very grateful he is that our clinic was his first stop on his year of training.

The thing is, teaching people is what I am best at doing. I stop whatever I am doing anytime a patient wants me to give them knowledge and I give them as much as they can handle, in the format that they can understand. When students or new graduates into the clinic, I have the same response with them. I spent two decades homeschooling children, multiple of those children with learning struggles or language issues. I'm very good at deciphering when someone truly understands what I said and when they are completely lost. I know how to alter my words until I find a method of explanation that makes the confusion clear for someone.

I know that others can see this talent I possess, not because they all rave about how grateful they are to find a true teacher, but because I encounter it. I see the grateful look when someone finally gets something they hadn't gotten before. I hear it from my instructors in school and my manager on my annual review. I know that I enjoy this when it comes up, whether it is at home with my children or elsewhere.

What I don't know is what I'm supposed to do with this talent. I am moving forward with my intentions to become a nurse practitioner, and I know I can teach nursing. I also know that sometimes in my own coursework I take time to teach other students instead of merely be a student myself. This week was not the first time a professor asked permission to use my work to teach other students even after I complete a class.

We don't pay teachers peanuts in this country. So, if I went into strictly teaching, I would never made money. I can do a hybrid of practice and teaching, but there is only one of me and I'm not certain that I want to work two jobs per se, especially when each is complicated in their own right. For now, I teach whenever and whomever the opportunity arises. This week's student had already learned that nurses eat their young and was so grateful to find a nurse who nurtures and teaches instead. There will be more. Whether it is a patient getting a blood transfusion, or a new graduate who made it through nursing school without starting IVs. Until I can figure out how to merge both sides of my personality, I continue to pursue nursing and teach when the need arises.

Climbing the mountain

Last month, I got some nasty malware on my computer. II is supposed to have virus protection on my computer, but something got through the firewall, something very nasty. Ultimately, he had to scrub the harddrive and completely reformat it. He always saves my files when he does it, and it's happened a surprising number of times--I'm terribly at safe web surfing, it seems. However, when he restored my favorites links, he alphabetized them. It drives me insane because I organize them by priority and they come back in a way I cannot navigate them, including finding the link to my own blog. Life has always taken priority over anything online, but especially blogging, so the blog sits silent while I live my life. Probably best that way but I started this to record my thoughts and sometimes it is best that I write and let things out.

Busy is a good state of being for me. It's not that I cannot address the grief of the last year. It's that if I actually stop, if I let myself fall apart, there will be no one here to pick everyone else up again. I give myself moments, permission to weep, to wail, to scream at the universe and a god I'm not sure if I believe in or not anymore. I am only allowed moments. More than that and the family falls apart. The children need me, and while I truly believe they have been instrumental in my getting through this for their sakes, there are times I get frustrated that their needs mean I must keep my own under control so tightly. E's therapist asked me last week if I have people to talk to. She said I don't have to have a formal therapist, so long as I have a way and a support when I need to talk and vent. Thankfully, I do have that. I have a good support system, a long list of friends I can reach out to, and a massage therapist whose main job is not the massage he gives me weekly but the question he asks me first--how are you doing this week? Eddie keeps me honest about my grief and my processing, and his touch on my body relieves the physical struggles I battle from both the grief and the medical conditions which escalated in this grief.

I am 1/3 of the way through this second Bachelor's in nursing and rapidly remembering WHY nursing was the one type of course I made Cs in the first time. I don't enjoy nursing courses the way I enjoy other classes. Sadly, I enjoy practicing nursing, so I must tolerate the formalized nursing classes to get there. My nurse practitioner friends assure me that nursing at the graduate level is far more my level of investment. However, for now I've taken on two very complicated nursing courses with heavy workloads. One of them challenges me and I enjoy, the other is tedious clinical work. In the fall, I get to take cultural nursing which should be much more enjoyable, as well as a basic math course that I don't really need but exempting would force me to choose another unneeded class to meet the residency requirement for this degree.

More importantly, we faced the anniversary. I really feel we're still on shaky ground, but we all seem to be settling down somewhat with it behind us instead of right before us. We went on vacation, camping as a family. We had not gone camping for four years. Our last fateful camping trip involved a trip to the beach, Micah's one and only camping trip. We took the kids to Gulf Shores for the fourth of July. Micah was not impressed. Our memories of that trip have become family lore. Until we made camp and found the remnants of that trip. There was sand still inside the tents, reminding us that when the storms came we gave up trying to manage Micah's constant raging from the change in pattern and left quickly. The hole he made his first night camping, when he howled at the moon (literally) while he busted through all of his medications given to help him sleep, was still taped with the tent tape II ran to Walmart at midnight to repair. There were rocks he had collected in the tote of supplies. A diaper that was packed for J on that trip, so tiny compared to the big preschooler he is today.

Our tears were mingled with laughter this time. Camping was tremendous fun and it was heartbinding that we gave S his very first camping trip of his life. We wanted to take Micah camping often. We found a way to manage his medical needs while camping (a flutter device and a campsite with electricity were required). We never found a way to manage his autism while camping. I know now that camping was simply far too sensory stimulating for a little one who was so sensory avoidant. After that fateful camping trip with Micah, we contained traveling with him to hotel rooms. Remembering all of that always reminds me of his last vacation trip. Labor Day 2011, we went to the Atlanta Fire Cup, as we had done every year for A's soccer adventures. That year, Micah's behaviors had suddenly escalated. I knew already what I had not told any of the siblings. I knew his CF doctor was stymied and had sent us home so he could rethink all that he knew because Micah was not responding to the treatments he was giving him. I knew he was dying already. When A asked if we could leave Micah home with the nanny, I told him there was a strong possibility that this would be Micah's last soccer tournament and that he was always such a die-hard fan of his big brother and his soccer abilities. I told A he had to bring Micah. Micah was actually on decent behavior that weekend. Hotel rooms were much easier for Micah, and hotels with pools meant I could distract him if he did get overwhelmed. A's team won the tournament and Micah was SOOO proud of his big brother that weekend. I am so glad I made sure Micah had that tournament. It was Micah's last vacation. The move to New England was not vacation and he was so terribly fragile during that trip that I worried if we could get him moved in time.

This weekend, we reaffirmed as a family that we need to go camping again. We can carry Micah in spirit and memory even though he was not so good at camping when he was alive. We hiked a mountain, literally. We followed a waterfall up the mountain and then the trail went back down the other side. J and I struggled with our asthma so we took frequent breaks, but we did it just the same. It seemed to be the epitome of the weekend and the task faced by all of us in this grieving journey.

It's not that this gets better. It's just that time passes and we survive another milestone. I hate being able to say it's been a year now. I hate that every day that passes takes me further away from my baby. I just know I cannot stop time from passing. Getting past the 12th has made me less triggery. However, it now brings me into remembrances of the first month last year. That was the month that the crazy nanny decided to turn everyone's grieving into her own drama llama game. I would rather not have to remember her, but Micah loved her. It was one of the two reasons I let her stay so long even after I realized how crazy she was. The other was that we all feared what happened to her children if I sent her away. Once in awhile, I stop and remember her behaviors last year, how she was so desperate to control all of the attention, even to the point she forbad anyone from saying Micah's name around her. I only wonder if she had enough sanity and genuine feelings inside of her to stop and remember that a year ago Micah died. Did he actually mean anything to her at all, or was he just part of the scam she ran on this family to milk support from us as well as childrearing for her children? The only video I have of Micah's voice was when she was tickling him. She was a part of his life for the last year of his life. Did he matter to her, or did she take so much of his heart and his living and toss it away when she did her exit drama out of here? I would like to think that Micah did not love in vain. It was so hard for him to truly love people and I would like to think that his choice to love her made an impact on her soul just as it has ours. I just don't believe it did. I don't think she is capable of love in the way Micah loved her. So somehow I feel guilty that I let Micah give part of what little life he had to someone who squandered his gift. I also hope that with time the grieving Micah will not be mingled with the crazy that wasn't worthy of his life nor the attention she stole from all of us when he died.

It's all just so anti-climatic. We don't wake up with it gone, our memories scrubbed and our hearts strong. We just wake up again, having faced the mountain and scaled it. We simply know there will be other mountains in our path, other times to grieve. Micah's life was far too short, but his spirit was so very bright. I still hear him calling me sometimes. Sadly, I never find him actually there when I hear him. I would give so much to run my hands through his hair again, to listen to him breath and marvel at his long, piano player fingers. Man, he could himself into so much trouble with those long fingers!

I still miss my Micah-man. I guess I always will.

Temporarily solo

II had to travel out of state for a business trip this week. It's been since before Micah died that he left us for this long, and it's been really rough for both of us. He mentioned that he used to enjoy business trips. Setting aside what he did on those trips years ago, business trips were always a time to stay in a hotel, where he got it quiet and someone else cleaned up after him.

Now, it just aches to have him gone. He reports the same feeling. It's exhausting to be without him to co-parent these kids.

This week, I have had to work more hours due to situations at work. I have had to do two major projects for my current class in the midst of this. I am stressed and exhausted. More importantly, when I put down the schoolwork tonight, I realized I haven't spent nearly enough time being MOMMY in all of this.....and I have to work tomorrow.

I am determined to love on my babies on their way to school tomorrow, and tomorrow night when I get home. I wish there were more of me and I could do more. The truth is that I realized in those nine months I was solo and finishing my last degree, I am not a good single mother to this many children. These children thrive with both II and I. I am so eternally grateful that we both got our shit together so these kids have both of us still actively engaged in their lives. I would like to believe we would do that even if we hadn't made it. I'm just glad we did and they get the benefit of both of us...every day....except when one of us is out of town.

Thankfully, I turned in the last large project for this class. I finished my last paper for the month. I got chores accomplished, and have successfully fed the children. When II comes home, I am hoping to sleep. I don't really care if I do less. I just want to sleep. I will just be glad to be back to a parenting team again.

I miss my husband.

Anniversary and Mother's Day

For all of the years I have been a mother, I have boycotted Mother's Day. As a child, I was forced to endure the torturous behavior of my mother. If we failed to make her feel special "enough" then we were subjected to emotional abuse for being ungrateful children. When I finally became a mother, she stripped me of that role and that child. By the time I had children the world recognized as mine, the sour taste was so strong in my mouth, I just wanted nothing to do with the occasion.

We've long run away from Mother's Day even in the days we were consistent with our church atttendance. I actually think it's been nineteen years since I was in church for Mother's Day, by my personal and deliberate choice. For those same reasons, even when children came into my life, I refused to make it a day about me, something that I forced into being for my family. It was never meant as a passive aggressive thing. I merely felt that my family knew it was Mother's Day and if they opted to remember it, then that was their decision but not one I would make for them. If we've had any sort of family tradition, it's that we almost always go hiking. That was merely a result of hiking being the most isolated way to escape the commemoration of the day without staying in bed for the day. Since I homeschooled for most of their lives, I did tell them it was Mother's Day, but I never played it up.

What has never been as easy for me to accept is that our anniversary falls within the same period of time as Mother's Day, sometimes even falling on the actual day. Until last year, the biggest celebration I can ever remember in all of the years we've been together was the year I decided to buy a Wii for the family, instead of an actual anniversary celebration for us. When the fall happened, I didn't want to celebrate being married to him. It took me at least two celebrations to see anything joyful about the date instead of a time of mourning for me.

Last year was perhaps the first time I was willing and ready to truly celebrate being married to this man....and Micah was dying. We did an overnight stay at a major attraction and then headed home. It was absolutely beautiful, understated, and the first time we had been alone overnight since we traveled to India years ago to pick up Ch. Let me just say, a $10/night hostel where they spend an hour at midnight trying to sell you tourist packages and then hand you a skeleton key for your door is just NOT romantic, especially when it comes after a long day of international travel and just before an early start to a second day of domestic travel. How I actually slept knowing the small bar of metal was the only thing between myself and any intruder came only from the belief that if I died that night, losing sleep was not going to make the situation any better. I also made II find a better hotel for our return to New Delhi with Ch. The rest of that trip we were not alone, and I was fully focused on Ch's medical situation that was clearly unstable when we picked him up. So, last year truly counts as the first time in nearly a decade that both of us went away overnight together. He's sent me away, or I've traveled on a rare occassion. He's traveled for business, and lived alone until we moved to New England last spring. We have not been together.

Last year's trip was mostly my initiation. There were no additional gifts, since Micah was dying and S had just been dropped on our doorstep. S came with a long list of expensive needs and immediately sucked up a good portion of our trip budget. I am grateful that I was able to check something big off my bucket list, but it wasn't exactly a long, nor decedant trip.

II has a long, long history of bing a lousy celebrator for birthdays, anniversaries, Valentine's Day, and Christmas. I have taught him a standard that I want the children to never know what it is like to not be celebrated. My entire childhood was able not being allowed to draw attention away from my mother and onto myself. The only people who celebrated me on any holidays or birthdays was my grandparents, who made things magical to the best of their ability to work around her and from a long-distance. I wanted more for my children. Thus, we do celebrations big for the kids. It's not about dollars, because sometimes there have been far too few of those. It's about making sure they have a day where THEY get to shine and be special, and holidays about focusing on making them magical for them. Until I struggled to even like him, I did the same for II for celebrations--muted compared to the kids but still as much love and heart as I could pour into celebrating, even if all I had in my purse to spend was $20.

Only one year did I do my own celebration and I was so upset and sad that I swore I would never do so again. I had spent my lifetime in the shadows. I would rather stay in the shadows than have to force people to see me and acknowledge me when they did not care. Since II has never bothered in the past, and I won't promote myself, the children have done very little most of their lives to celebrate me. I would rather be the steady strength they know is always there than force the issue. I accept that from the children. From II, it was devestating. However, I could not force him to behave differently either.

When he moved to New England, he apparently made a vow to be a better husband. Yet, Micah was dying, and that changed everything about our lives. It wasn't that I didn't believe his effort to change was dishonest. I just didn't believe he was capable of follow-through, nor of my ability to appreciate any efforts at that point of time. I don't even remember my birthday last year, coming so close after Micah's death. II and I spoke just yesterday of my desire to not try to remember that birthday. I recall what II was planning, and that the planning fell through when Micah died. I don't remember what we did, if we did anything. I don't want to remember. That birthday is too tied into grief for me to want to be apart of it. So, I cannot tell you if II did change how he has treated any celebration that was about me. I know he was trying and then our lives fell completely apart

What I do know is that II did an effort at Christmas, not to merely put something under the tree, but for it to be about meaning and connection. I was deeply touched by his efforts at Christmas, but did not honestly believe it would happen again, not with his history. When Valentine's Day rolled around, two of our teens destroyed any ability for us to do anything by their insistence that they go to a Valentine's Dance at their school...as 8th graders who cannot date, mind you. We both gave up on the idea of Valentine's Day.

A month ago, II came home with a box for no occassion, and no reason. He gave me a necklace, a beautiful one. He never gave me an explanation as to why. Having not recieved even small gifts from him since before his cheating days, and certainly not without a very specific reason, I was nervous. This month, for the first time as an adult and as a married woman, early May was not a time when I was forgotten and trying to run away from the cultural attention.

II went way beyond my comfort zone in shining attention on me. It wasn't about the money, though he did spend some. Perhaps the most precious thing he did was send hourly love notes via text when I worked on our actual anniversary. For fifteen years love notes are the one thing I have asked from him, which he never even attempted. The attention he shone on me for the first two weeks of this month have been nearly uncomfortable to bear. Yet, the heart I see behind these choices is something so very precious to me.

In addition, now that most of the children are in public school, they have been fully indoctrinated at school regarding the holiday of Mother's Day and the expectation to honor your mother on that day. Instead of the usual lack of even recognizing the day, my children behaved differently. Having long focused on the value of handmade gifts, my children presented me with a large stack of that very type of gift. The oldest two teens gave no gift, not surprising for those two, but they did remember the day and hug me, telling me they love me. One of my children spent meticulous hours in secret burning a love letter into a board of wood for my gift. As soon as II figures out how to mount it, it will go on my walls--likely for enternity.

To culminate my tradition of escaping the day, we loaded up as a family and went to help a friend in need. Her family bought a fixer-upper and were in desperate need of manual labor to finish getting the house habitable so they can move out of their rental and work at the rest of the fix-up work as they live in their home. In a month, they made frustratngly slow progress. Thus, we loaded our crew up and headed over to lend a hand. My children gave cheerful effort, and serious labor to the day. Our friends are now looking at moving in as soon as they can now pack up their belongings, hopefully as soon as this upcoming weekend.

This was truly the best May of my adult life.

So long, my friend

They warned me when I started this job that there are certain patients you will become more attached to. They warned me to make sure and take care of myself because sometimes these losses will hurt more than others and will stay with you. I've been in the shadow of death before, just not as I fully embraced this path as a professional, dedicated to walk this journey with those who are dying.

I met you while I was on orientation, though I don't think you realized it yet. You had only visited us a few times at that point, so it was all new and overwhelming to you. You were just one of many until that day you were cold. You were so cold that your entire body shook, and your fever climbed, and it was rapidly clear to all of us that you were not cold but reacting, badly. Trying to help you get stable that day pulled at my heart. Telling you that you were not driving home, whether you wanted to or not made your strength and determination shine through. The look of love, devotion and terror on your wife's face when she came to pick you up endeared you to me, to see her love and her heart breaking as you struggled.

Quickly, you became a regular, coming to see us three times a week for life sustaining blood products. Most days your visits were short. Sometomes you spent all day with us. Each time, you wanted tomato juice because nothing else tasted at all to you anymore. On New Year's Eve, you remained in good spirits, but made it very clear that you had to leave in time to cook surf and turf for you beloved. Those lobsters weren't going to cook themselves, you insisted.

You spoke of hope, of your wife, of your children, of vitality and overocming. Only in whispers did you ever give credence to what lurked underneath. Once you told me that the doctors had told you the cancer had stopped responding to any medications. You still took them, but you continued to come to see us as well. You talked of your two children, of the joy that day so long ago that you were called to drive to Ohio and pick up your baby son, after years of longing to be a father. In your words and your devotion, love shown through.

You talked of your youth and how you played basketball on a community team. When you saw an old basketball competitor, you took time after your own visit to sit with him, to comfort him as cancer wracked his body so horribly but not his mind. You saw beyond what life had given him and were simply an old friend until he too was ready to go that day. When he died, you were the one to tell us, having read it faster in the paper than we did.

All of that time, I knew what your chart said. I never let your records guide me, but I knew what the end would be. I knew that all of that vitatlity would not battle this disease tearing down your body. I knew eventually I would have to say good-bye, no matter how much you brightened my day when you came. Knowing you would come, and we would laugh, and when I showed concern you would repsond by standing up and trying to dance helped pass my days. Knowing that I could give you something precious, compassion, support, comfort was enough. I knew when it was your season it would hurt. I knew you were my first patient to be atached to. I wasn't the only one attached to you. It was hard to not when you light up our clinic with your smile and your gentle ways.

The lesions came and I knew goodbye was getting closer. I knew those lesions came from a complete shut down of an immune system. You sought a second opinion and they told you what I already knew, there was no hope for something more. Still, you continued to come, to act as if this was temporary and it would be over soon. Then, the lesions grew and more come. You often came with bruises covering your body and I cringed to know that to give you life sustaining blood, I also had to hurt you.

There was a day our assistant walked into the office and commented that she could no wait until you were better and didn't have to come so often anymore. I pointed out that your ending was not going to be with getting better but passing from this life and she recoiled. I knew from the very beginning that you were one who would not get better. I knew, as I told her that day, that our job is not always to get you better. Sometimes we simply make sure we make your life better every moment we are called upon to support you. Sometimes that has to be enough.

You made an appointment for a third opinion, and I knew in my heart that it would not be any better than the other choices. So, it was no surprise this week to be told you have moved to hospice. Hospice will not pay for the palliative treatments of blood products. Blood is not merely palliative but life-sustaining. It just doens't cure but it prolongs. Hospice will not pay for you to return to us, so you pass from the season where our paths cross to your last journey without the chance to say good-bye and to give you one hug.

Thus, I carry your memorty with me, my friend. So long, my friend. It has been a pleasure and privilege to hold your hand. It has been a blessing to stand with you, to make these months of your life more comfortable and attainable. My prayer for you is that your passing will be without suffering and surrounded by those who love you as much as you have shown that you love them. With them, your memory will be eternal. I will open my clinic doors tomorrow and another soul will greet me in your place. They will require the minstration and attention that I poured into you, and I will soothe their suffering as I did yours. May your memory be eternal, my friend. You will be missed by so many, mine is but a small voice that says good-bye.

Reclaiming what the locusts have stolen

Every one of our children has had a big celebration when they hit 10. When they were all little, there was something so monumental to me that they hit double digits on their age, and I decided since we don't observe a lot of other traditions, we would create one of our own. For A's 10th, we took all of the kids to Medieval Times, which was quite the experience with our crew of kids in tow. For E's 10th, I took her to American Girl's store and let her spend a ridiculous amount of money to accesorize her beloved dolls she was obsessed with. For C and Ch, they turned 10 within a few months of each other and agreed to share their celebration. Thus, we took the entire family to Ringling Bros circus and they each got a big dollar amount for spending there. Micah was not able to celebrate his 10th and last birthday with fanfare. Instead, we did something very low key, and we did an over the top vacation this year when he would have been 11. However, my poor, precious R turned 10 just two months after her brother died.

The finances were insanely tight right after Micah died. The combination of funeral expenses, the money the crazy non-nanny cost me for her behaviors and lack of money sense, adding S and having to buy him even the most basic things such as clothes and medication immediately, then S's hospitalization in the middle of Micah dying, money was simply awful last fall. If it were just about the money, we would have figured out something to still give her the celebration. She did have a birthday. Right after Micah died, when I saw what the finances were doing, I bought Waldorf doll kits and I made Waldorf dolls for R and L for their birthdays, beautiful dolls for pennies on the dollar of what it would have cost to buy them, and something well cherished and much longed for by both girls since I once made the same for E when she was little.

However, the reality is that the lack of finances was the least of the hurdles to overcome for having a celebration for R. The non-nanny went off the deep end and stressed all of us out so badly that we were all prone to crying without a lot of notice in that time. The stress of her behavior in the month after Micah died flared my psoraisis to the point that I couldn't even think around the pain. Then, my thyroid crashed and crashed hard. Keeping the kids functioning and cared for was all I had the wherewith all to accomplish in those months. Pulling off a subdued celebration for R was a major accomplishment for her 10th birthday.

Even so, I promised her then that once the dark clouds passed from our lives, she would get her celebration. This weekend, I delivered on that promise to my beautiful little girl. She could not decide what she wanted for her celebration, so I finally simply did it for her. I booked a suite at a local resort for the night. It is an historic resort and the suite we got was one of only two with porches on them. This porch was absolutely massive. There was also a jucuzzi tub. She wanted a robe as a keepsake. I knew the resort would not let her keep their robes, so we bought one for her that I gave to her there--purple, like everything else she loves. I took her to the store and she bought groceries, snacks, and some cool gadgets for her. Her absolute favorite was the cupcake with a butterfly on it.

Saturday night, II got the other kids settled with their dinner and a movie, then picked us up to take us to Cracker Barrel. R got undivided attention of her mommy and her daddy and she absolutely thrived in the moment. She was also given a sum of money for her to spend on herself over the weekend. She started at Cracker Barrel. However, we have discovered that R is much like her big brother, A. If you give her money and tell her to spend it, she is very tight with her money. She checked every price tag, rejected much of her choices as too expensive or a waste of her funds and finally settled on just a few things. She bought a stuffed cat, baby bottles for her dolls and stick candies she bought for her siblings. I did ask her to not worry about buying for them, but she insisted the candies were only 8 for $1 so she bought those for them anyway.

After dinner, R and I sat in our robes on the verandah at the suite. She played webkinz and nattered at me until we both grew tired. Then, we piled most of the king bed full of pillows between us and crashed on the massive bed together. For reasons I don't quite grasp, she twice in the night tunneled under the pillows and started kicking me. One I quickly corrected by asking her to please stop. I'm not sure she even remebers doing it. She had a great night, but I was a bit more tired afterward than she was.

Today, we got up, ate breakfast, she played and danced and talked and we got ready to go. She then took the rest of her funds to the mall where R learned the literal meaning of the phrase "shop til you drop." She bought everything she set out to get for herself,--DS games, sunglasses, and a belt. Then, she bought quite a bit more. I bought her a few things, and got one small thing for each child left at home so they wouldn't feel left out. Of course, she required me to carry all of her bags and bags and bags. She simply glowed.

We finished our day with massages. Massage therapy is the one thing I consented to allowing the wrap-around services provide for me. Our case worker first talked me into trying a massage a year ago now. I left that first massage with my entire balance off kilter, having never had any stress relieved from the grip it holds on my body since I had become Micah's mother. She begged me to accept the massages from the services and I agreed only because I was falling apart physically. This spring, R had begged and begged to be allowed to have an occasional massage and the wrap around services set her up with once a month massages. She's been through grief therapy but she always feels she is lost in the shuffle of this family. She saw others getting massages and this is what she wanted to help her little heart with it's heavy burden. So, I set up this month's massage to be the perfect ending to her celebration.

I told our massage therapist about her weekend and how determined I am that she not lose her 10th year to this grief and he decided to pitch in his own effort to make the end of her day extra special. So, not only did she get a monthly massage, but R got a free, extra special facial to end her day. When she came home, she was able to go over her special day and her treasures from her day. I believe that when she remembers her 10th year, and her traditional celebration, that she will remember her grief, but she will also remember being treasured and her over the top celebration too.

I cannot take away the grieving. It is part of who we are as a family now. I cannot get us to a stable place and be out of this journey. This is as much a part of who we are now as the color of our hair and eyes. I can only help R, and all of us, remember that this grief is part of us but does not define us by itself. We are still who we were, and yet we are also a family missing one who was precious to us. This dichotomy will follow us for the rest of our lives. We have to celebrate and treasure our lives just as they are even as we grieve. This is who we are now. We grieve, but this weekend, we celebrated as well.

I miss the laughter

For fifteen years, my marriage and relationship with II has been characterized by laughter. We have an odd, sacarcastic, sometimes biting humor, but we always spoke each other's language. We passed this sense of humor onto our children. In fact, it was the first thing I knew S noticed about our family that made him feel safe and welcomed here. We laugh together. We tease, gentle and stop immediately if someone is offended instead of tickled. There are times we simply break out into a spontaneous food fight (no one is allowed to throw the first handful of food except mom cause she'll only throw it if she's willing to manage the mess that will ensure).

Three years ago, we lost the laughter for awhile. It took longer than I wanted to find that laughter again. There were so many days that I was just numb and not able to push through the pain of betrayal to be the laughing wife and mother I always was. Yet, we found that laughter again just the same. Micah was so much a part of helping me find that laughter again. Micah was Austitic. He laughed constantly, loudly, and rarely appropriately. However, when you saw that big toothed (or back when the dentist was only able to fix his second round of bottle rot by pulling all his teeth it was completely toothless) grin, you had to laugh. Micah never understood the world. He tried, oh how he tried. But, this world escaped his understanding. So, the craziest things would bust out of Micah's mouth and the only response you could give him was to laugh.

When he first came home, I meant to record these Micah-isms. Even then, I knew one day he would stop providing them. I thought I had so many years left to hold him, and I got so lost in the daily struggles of his behaviors that weren't nearly so endearing and cute. When he landed in the PICU, I remembered that I never wrote down all of those silly, crazy things that used to pop out of him and leave you shaking your head, or busting out laughing.

I miss the laughter. I wanted to buy a video camera and I just never did. It wasn't until after he was gone that I realized...I bought an iphone this year. It has a video camera. I have precisely one 60 second video of Micah. It's all I have to remember his voice, most moreso his laughter.

I try to laugh now. I try to play with the kids and to live our lives as if all of our hearts are not broken and bleeding. I still cannot bring myself to eat at the table as a family. The kids have actually asked that we do so. Years of the every mealtime battle to keep Micah growing, every day where I coaxed and cajoled him and when he would finally eat, he would choke and I would have to try to teach him what it meant to chew and swallow. I look at the dining room table and it's like a knife to my gut that he's not there. So, we eat in the living instead now.

I try to read bedtime stories and I miss as much as I hit. I read to them at other times during the day, but at night I remember that Micah's favorite was Susan Boyton, that he loved Barnyard Dance SO much that he used to sit and recite it to J as if he were reading it. I miss even his screams. Mostly, I miss the laughter.

Instead I rejoice that I have finally passed the threshold that I can answer the stupid question of how many children I have without falling apart into tears. I'm not still sure when the roller coaster ride of grief instends to let me off. I just know that walking back through spring has been excruciatingly triggery to me, and I miss the laughter SO MUCH.