Living in the Spiritual

Some of you may have read this before...I wrote it in 2004 and wanted to put it here, too.

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Living in the Spiritual:
Since we lost our son Andrew on May 26,2003 I have done a lot of thinking about dying. In fact, I guess it started before that...during his course of Mitochondrial Disease. I have realized a few things...one is that the art of grieving is not alive and well in America and two, many Christians have lost the ability to look beyond the physical and see the spiritual.

We in America have become arrogant...we think we are untouchable...we have not put our trust in God, we have put our trust in medical advances. We have this overwhelming idea that life in America is generally good. I find American Christians to be even more convinced of this. They tend to think if they live ‘the good Christian life’ and are a good person, then God will make everything in their lives smooth and easy.

Lets take a look back to the first part of the 20th century and see what it was like then. Death and dying were a part of every day life. People often died at home and were kept at home until they were buried. Death was much more common and no one was safe...young and old, sick and well, anyone was susceptible. These days death, especially an early one, is out of the ordinary. We are deluded into thinking it happens rarely and only then to the old and sick, or to those who have ‘invited it’. We also forget that in many other countries, it is still a normal part of their everyday experience. I expect that when someone was caring for a sick child or husband at the turn of the century, several things happened. I expect that people weren’t found saying “If there is anything I can do let me know”...instead they asked “If there is anything ELSE I can do, let me know.” I imagine this was after they already helped with household chores, errands and taking care of children. They didn’t wait to be asked or put the burden of asking on the bereaved...they simply knew what to do. I imagine that when that person died, everyone, particularly women (who minister only as women can), surrounded the mother or wife and enveloped her in love, making her life as easy as possible.

Also you will find that people were not rushed to grieve. I was asked just weeks after Andrew died ‘oh that? You are still having a hard time?” I mean honestly, do we as Americans expect everyone to be machines now? A Hundred years ago, you would have found mourning rituals...not just a three day ‘event’ until the funeral was over. You were expected to wear black for a certain amount of time, then grey and then mauve. For people who lost children, there was mourning jewelry, often brooches that usually contained a lock of the child's hair. Grieving was much more extravagant.

Wonder what is was like if you were a Christian? I think most people back then had some belief in God. They were expected to place their trust in God during these times, but the vastness of their loss was also acknowledged in a myriad of ways, even putting black borders on their writing paper. Sympathy was strong...compassion, the norm.
At church, we have been going through Philippians. Both messages thus far, have been mostly about life and death. Now I know this could send the grieving in the congregation out of the room, but I was inclined to stay. I am one of those that makes myself look at the hard things and try not to let my emotions come over me, but its easier said than done when it comes to losing Andrew’s daily presence. The messages have been more about evaluating your life...what is your life going to say about you? Whether you live six years or 60 or 106, your life will say something...what is it you valued most? I can proudly say that Andrew’s had several loves in his life...Jesus, people (and he loved them all) and balls...and at his Freedom Fest (what we called his funeral), his love for those things was the mark of the festivities. The preacher also went on to say...that if we as Christians know this is not our home, then how should we live? Another teacher said this week, that we have it all backwards...as extreme as it sounds, we should grieve at birth and rejoice at death! Even though that sounds harsh, it just might be the truth!

Andrew went on hospice in February, just four months before he died. During this time a lady named Jane, who is a transition nurse on the Oncology floor of a local hospital, befriended me. We talked over the phone and exchange a lot of emails, in fact, we didn't’ meet in person until a couple weeks after Andrew found his freedom. I remember when Jane reminded me to look at this in the spiritual and boy did that make a radical change in my outlook. As Andrew’s caregivers, Fred and I HAD to be thinking of the physical changes in Andrew’s body 24 hours a day...not much else was as important, during that time in our lives.

“Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven...meanwhile we groan, longing to be clothed with our heavenly dwelling. Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come. Therefore, we are always confident and know that as long as we are at home in the body, we are away from the Lord. We would prefer to be away from the body and at home with the Lord. WE DO NOT LOSE HEART; though outwardly we are wasting away, yet inwardly we are being renewed day by day. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary but what is unseen is eternal.” All from 2nd Corinthians.

Those are the words are still hanging above my desk and are still hanging above the spot where Andrew’s hospital bed sat. I am sure it has disturbed some people. We have many wonderful friends who love Jesus that believe in divine, miraculous healing. I believe in this too...I have not only been the recipient of this but have laid hands on others and God has healed them as a result of that time in prayer. Our whole stance about healing when Andrew was sick was we knew God COULD heal him on this earth, but we didn’t know that he WOULD...we just had to say “we trust you God, no matter what!” We knew that regardless of the length of his life, that Andrew would fulfill his destiny on this earth! However, as long as he was sick, I HAD to be about the business of that day...just as I believe the Proverbs 31 woman would be...but if Andrew was healed that day, then the business of my day would change...and happily so!
We were often criticized for not having enough faith...for losing faith...or focusing too much on a bad report. You know what? I don't’ believe that...it takes more faith to live in the spiritual than it does in the physical and God told us: “when we are faithless, he remains faithful!” Implying that our faith was not strong enough to heal Andrew does two things...it puts us in control instead of God and it implies that a lack of faith caused Andrew’s death, pain and suffering. I KNOW we live in a fallen world where sin and sickness reside, and I’m not sure how that all plays out, but I do know this...God didn’t take Andrew, he received him! He welcomed him! He had a party! So if we really want the mind of God, we should be happy that Andrew got to go early...in fact, I am almost jealous at times!
Honestly, the doctors never knew how to give Andrew a prognosis, they could only look at the decline. When he was diagnosed right before his sixth birthday, one doctor told me he thought he would live to be twelve...so as I lit those birthday candles, I thought my child was middle aged , yet part of me wondered if I would get to light another candle. By the end of that year, God told me Andrew would die in 2003...I knew it and I was at peace...it was so hard to hear and I told the Lord that I didn’t like it, but I understood. I never told anyone this...not a soul, until after he died...the criticism would have been too much! I knew when hospice suggested planning Freedom Fest (as they do with all patients), that it was okay...God‘s peace was all over it! He gave us all the right ideas to epitomize the value of Andrew’s life at that celebration and I don't regret that at all.

This business of my day not only included the physical, but the spiritual, as it should for all believing moms. Andrew loved worship music and I remember him asking me what ‘spirit’ meant. Of course, trying to explain this to a six-year-old who had lost years of cognitive skills, was a challenge. But here’s the wonderful gift the Lord gave us...spiritually, Andrew’s ability to understand was beyond explanation. I told him that a spirit was the part of us that made us wonderful (because he never knew people could be anything else) and what made him Andrew and me mommy. Then God guided me and I said that our spirits would live together forever! Andrew then said this quite often, and generally just at the right time, but he added a little phrase...he would say, “our spirits will live together forever in our hearts.”

During those last two months, Andrew and I had many talks...always started by God I think. I recall one time I told Andrew that if Jesus called his name, I wanted him to run, run, run as fast and he could to Him! Of course I said it through tears and with an aching heart, but there is NO other place in this world I would rather my child be, if not with me! A few days later, Andrew came in my room early one morning and said he wasn’t going to run to Jesus...I got all ready to reteach him, when he said...no mom, I am going to skateboard! Andrew always wanted to skateboard and never could on this earth, but that is how his heart and mind grasped getting to Jesus the fastest! This was part of taking care of Andrew in the spiritual.

About ten days before Andrew got his freedom, he told us all goodbye...even the two visitors we had at the house. He was confident that he was going to see Jesus that night...he was very excited and we of course, watched him extra close through the night. The next morning he didn’t wake up quite as fast, so I rushed to check his breathing...still fine...I was so anxious during that extra thirty minutes of sleep he took. When he woke up, he was all disappointed and said ’Jesus didn’t call my name”. I quickly covered and said I thought Jesus was still working on his skateboard...he accepted that but ever happy to see Jesus and get a new body.

Andrew got his freedom on a Monday...on Memorial Day...being that he was born on the fourth of July, it was perfect timing. However, that Saturday he had a fairly normal...if not, good day. He went outside on the porch for a few minutes...he also ate his favorite thing...a hamburger! He did start complaining of pain that night, then again, he told us all goodbye. Actually, he wouldn’t let me leave the room that night until I gave him permission to miss me, even though I tried to talk him out of it.
The next day he was out of it but since he was on a lot of meds, we thought he was drugged. The weekend nurse didn’t know him well enough to realize these were his final hours with us on earth. Around nine that evening, even though he was pretty much in a coma, he started clapping wildly and speaking inaudibly...yes, he was cheering. We are quite certain this is the moment he saw his Jesus and skateboarded into heaven...the moment he was truly free and given the new body he so desired! Its amazing to think back on it and it brings me joy to know that Heaven is not a solemn place and my boy who thought any occasion with cake was a party, is enjoying himself now. He probably has the privilege of being one of the greeters, cheering as others enter Heaven, since he was always our family cheerleader.

Now while we know the clapping was a physical manifestation of what was going on in the spirit, his body, had not yet given up. When I went to bed that night, there was still no change and I really didn’t know what to expect. Fred was sleeping on a small bed in Andrews’s room and woke up in the wee hours to discover that Andrew’s body was, in fact, in the process of dying. We called the hospice team and they told us based on what we saw in the physical, that it would be over very soon.

For the next two and half hours, what we saw his body go through, was frankly, gruesome. No one prepared me for that...the human body doesn’t want to die and the struggle to stay alive is quite amazing. However, in those moments, when I was able to get beyond what my eyes were seeing, there was a real beauty there. Its much like being a labor coach...you maintain the focus so the other one can let the body do what it needs to do. I felt like I was urging...ushering...the last bit of his life into what was going to be the most amazing part of his life, it was his true spiritual birth. There was a quietness...a perfect holiness about it that doesn’t bring me to tears because of what I lost in that moment, but brings me to tears because of what I gained. The healing had come...my job of preparing Andrew for the next part of his life, was done...he was away from his body, but with the LORD. So I choose to fix my eyes on what is unseen...because that is what is eternal!

deb wells
May not be reprinted without permission from the author 01.21.04
in memory of Andrew Pierce Wells 07.04.96-05.26.03

Grief and Personality

Grief has made me, many times, a better person than I ever thought I could be. Yet sometimes, it makes me much less of a person than I want to be. However, that's better than the times it makes me not recognize myself at all.

The person I used to be is left in part...good parts are magnified, bad parts are more intense. I'm still, five years after losing our son, Andrew and two years after losing my whole extended family, unaware of who I will eventually become.

The journey is difficult at times...surprising, in a good way, at others. Its not a journey I asked to be on, but I'll try to let it take me somewhere...hopefully landing on the better side of my person, than the alternative.

What I know for sure, v.2007

Seasons Greetings!

Well its that time again for my annual 10 things I know for sure letter! (Okay, so I had 12 this year). I started this traditoin the Christmas before we lost our sweet Andrew when I needed to find a way to focus on all the gifts of the everyday. This is the fifth edition for us to take time to focus on the 'everday' miracles in our life! Its been quite a year, with another big move, and if you have been reading my blog, you know God had to knock us over the head to get us here. However, God has confirmed several times that this is where we are supposed to be! In many ways, a hard transition and in others an easier one.

This is such a therapeutic activity for me, and I encourage you to either make a list of your own or take a few minutes to reflect on the things that we skip right over, that truly are small miracles for us. We'd love to hear from you, whether you make your own list or not.

Merry Christmas~

What I know for sure...

I know that living with a gaggle of spirited children, keeps you acutely aware that you are extremely alive (okay, and tired, too)!

I know there is something so sweet and special about your other children continuing to learn from the legacy their biggest brother left behind.

I know there is nothing more exciting than seeing your nearly nine-year-old who has a hard time relating, start making a point to connect with people by trying to understand football.

I know that its a blessing to finally have answers to long-lasting questions, even though the answers sometimes give you another more precise questions in its place.

I know that while navigating snow can be a pain, there is not just true beauty in what the eyes see, but in what you do not hear, because of the quietness it brings.

I know that you can find the most outgoing, helpful and friendly people while getting your hair cut or having a mishap at the spa!

I know that having an almost three year old who lives on a diet most of could not even fathom, somehow makes you the happiest and most grateful kid most people have ever met!

I know that there is nothing more important as parents, than making every day special and filled with memories because life changes too quickly.

I know there truly is a "Giver's high" and it is a 'high' we should all become addicted to!

I know that living with the tremendous loss of having more family members in heaven than on earth, can make you hold everyone in your life a little closer and hug them a little tighter.

I know that it can make a mom's eyes filled with tears to hear her six year old advocate for her big brother's social inadequacies, her little brother's food allergies and walk in memory of her brother in heaven.

I know that there is something incredibly special about this being the year your child is old enough to enjoy Christmas...and I know he does, because he says "I LUUUUUB KISSTMAS!!!!" every chance he gets.

Merry "Kisstmas" to you and yours...May you find some everyday treasures that you "know for sure" this season.

love
deb for the gang

My turn?

There have been lots of "my turn's" lately. I have to brag on my husband, who always makes sure I can have some me-time when I need or really, just when I want it.



My birthday is in October...Fred's not a great gift-buyer so he usually gets me a mini spa day, which of course, suits me just fine! I LOVE facials...there is just nothing better. If you are in Memphis, Goulds day spa on Ridgeway...ask for Mandy...she's the best! But I digress.



I went the weekend after my birthday for a facial, pedicure and manicure. I was SO looking forward to it and have been SO stressed lately! So, I went and there were a few kinks I was willing to overlook. Then they left me in the back waiting after my facial...for 45 minutes! Usually I will just overlook this stuff, but not today! So I went up front, paid for what I had and went home and wrote an ugly email to the owner.



The owner, as it turns out, is a busy mom of three and we actually have had some fun conversations. She agreed to do everything over, with upgrades and gave me a reflexology session on top! So, I've had my turn quite a bit. I love my family and being with them, but there are a few places outside of that, there are a few places I like to be.



One is Sephora...its the happiest place for me (although given I have issues with chemical smells, I wish they'd tone down the perfume stuff)! Its just suits my creative side with the makeup to play with...the ladies are all nice and fun and helpful! And now, I'm a beauty insider so I get free stuff...I mean, who could beat that?



Second would be the day spa...getting a facial. Seriously, if you haven't had one...you should do it just once! Stress shows in our faces right...we tighten up...we frown...we purse and you get the picture. Its not about the wrinkles (although now that I am getting some, it might be), but about the facial massage. And, if you didn't know it, they massage your hands, neck and shoulders, too! Its divine!



Third would be the mall...or just shopping...or HomeGoods store or Target or a really cute kids boutique. But if I am really trying to unwind...I love to go to the bookstore and spend a couple of hours...don't even have to buy anything! All mommies should know about this FREE trick! (Oh and I love to go to the movies by myself and see a good chic-flick...its great therapy!)



My best friend from college was supposed to come this weekend...we were going to shop on the famous Newbury street! I was SO excited...Tammy and shop-til-you-drop-marathon for three days! But she didn't get to come...her boss gave her an ultimatum. I was really sad...because I just needed that and its a little lonely here in Mass. But, Fred let me go by myself.

I have shopped on the Michigan mile a bunch of times, with Tam in fact. Fred and I have shopped Haight-Ashbury in San Francisco. Newbury Street was a cross between the two and it was great! It was freezing and windy and I learned a few things about taking the T in rather than parking ($30 later), but it was great. The South, has the most amazingly cute gift shoppes...Maine didnt have those and I have so missed them. I found a couple on Newbury street...so exciting to me, because I hate giving gifts that you can find just anywhere...so, yeah, it was pretty fun!

Then last night...another 'my turn' but not the fun kind. I was at the ER. I haven't even been to a doctor in over 18 months! However, I got the worst and oddest headache of my life last night. I have had migrains...since...forever...maybe since I was a teenager. I had them worked up at the time...probably didn't find the meds helpful and just learned to deal with them on my own.

This was so much worse though. I couldn't see properly at first and then wham! I was sick instantly and vomited so much in those few hours that I was dehydrated. The car ride to the ER...that was torture really. But enough about vomit. Anyway, they said it was an 'atypical migraine'...I'll say! They gave me IV fluids, a shot of extra strong ibuprofen type thing, some nausea meds and I my pain went from a 12 to a 3! They did a cat scan so that's all clear and want me to see a neurologist. So when will I be able to do that exactly? Who knows.

I'm a hard stick to get the IV line in...so they dig for a vein after they get in...it doesn't feel pretty! But, I just kept remember poor little True who had to get stuck six times recently and thought I have no reason to complain! Also, Andrew's words are repeated by his brothers and sister every time they have to get a blood test "Its just a little pinch!" He was so brave...his strength (and True's, too) is mine!

So I took it like a big girl...digging and all. I am so blessed to have a husband who lets me have 'my turns' and to come home to these children who teach me so much...even when I feel at my worst.

So, I have this brother...

Yeah, so that doesn't sound as witty as I thought it would. Actually, my brother, Ben, he's far wittier than I and I'm sure he would have come up with something better! This pic is of Ben and I from a couple of weeks ago, celebrating our birthdays together, for the first time. Ben and I are ten years and one day apart, but we've never seen each other ON our birthdays.

So, here's the story of Ben and I. I often elude to it in our monthly family email updates but never have the time to explain. So I figured I'd take the time here and can just tell people to read about it if they want to know more.

I have to start with my mom, I suppose. My mom met Steve on New Years Eve...he's the man I consider my 'dad' but he's not the guy who contributed to my DNA...that would be Stan. Steve, was the love of my mothers life. (In fact, he died when I was 18, she was remarried for 14 years and yet, Steve remained the love of her life until she died in March 2006).

Anyway, I was born in 1969 and Steve, unfortunately, was called to serve in Vietnam in 1968. My mom was crushed. She, famously one time, wrote him a 96-page letter, she missed him so much! However, her parents were very strict and my mom was looking to get out from under their jurisdiction, so she met Stan and started dating him.

Even though my mom, still to this day from people who knew her then, say she was the most innocent, naive girl they knew...somehow, ended up pregnant before she married. So, Stan is the contributor of our DNA. Back in those days, you had two options...marry the father or go away until the baby is born and give it up for adoption. My mom's biggest aspiration in life was to be a mom (and a great one she was too!), so she took option one.

My grandfather was a different person before I was born...everyone says his whole personality changed the moment he saw me...so I have a hard time understanding how he was before. But, he was a Lieutenant Commander in the Navy and had someone acquire Stan's files (who was also in the Navy) and tried to convince my mom that Stan was psychologically unstable. But my mom was too afraid to not marry him and went on with the wedding. My grandparents were supportive after but they were not happy about the whole deal.

My mom says that Stan changed into this horrible person in the elevator on the way up to their Honeymoon Suite the night of their wedding! Shortly after this, he got heavily involved in drugs...it was the heigth of the hippie movement...he even left her with a newborn and went to California to experience all of that life he could. He was verbally abusive to my mom, strung out on drugs and eventually, my mom realized she needed out.

Actually, she had a little help in the convincing...not from her parents, but from Steve. She had kept in contact with him and he told her he would take care of us financially if she would just get away from Stan. I can't imagine how my mom must have felt...knowing she was so traditional and I'm sure she felt quite embarrassed about being divorced.

I was born in October of 1969 and I think the Marriage ended the following Spring or early Summer. Steve got to come home from Vietnam shortly thereafter. As soon as he was on American Soil...actually, at JFK airport in New York, he called my mom and asked her to marry him. My mom was over the moon!

They set the date for August 21st...and they were sweating bullets when the divorce finally came through on August 14th, which as it turns out, was my dad's birthday! Shortly after they married, my parents called Stan and asked him if he would sign papers so Steve could adopt me. They always said that Stan's reply was "Wow...I can say it backwards, Wow!" But he quickly agreed...not owning up to responsibility fit in perfect with his new lifestyle...and I'm super glad he signed those papers! I can't imagine how different my life would have been if he hadn't.

So, yes, my mom was part of a whirlwind, romantic tale...with a kid. But I have always loved the story. Hopefully, I got the details right...but there really isn't anyone to ask (except my mom's best friend Madonna...is this right?)

My mom never hid the fact I was adopted...she could have. God is funny because I have the exact same birthmark as Steve's mother and my dad and I shared the same shade of blue eyes. Even though my mom was open with me about my DNA, we did keep it a secret from friends and no one really spoke of it at family functions.

When I was 16, I was looking for something and came across a photo of my mom and Stan. I had never seen his picture before. Although I do look like my mom...the pictures of a young Stan, was undeniably full of my features, too. I stole the picture. I put it in my purse and carried it around for a couple of weeks...and told a couple of my friends who looked at it with me.

I'm not exactly sure how my mom came to notice the picture was missing from the box, but she came UP TO SCHOOL and demanded it! I didn't see it again for a couple of years.

My mom was always worried about my dad's feelings in it all. They had tried to have children together but never could get pregnant. Back then, you really did have to have a level of wealth in order to adopt, so they never had their own biological or adopted children. I think my dad totally accepted me but I'm sure he was sad there was not another boy to carry on his family name.

When I was 18, I still lived at home. Stan, suddenly called out of the blue. Apparently he had been waiting until I was 18 to make ammends for what he had done to us. Stan had been 'clean' over 10 years and still very active in a 12-step program. One of the steps suggest you apologize to anyone you have hurt in your addiction. Stan wanted to complete this step. He did apologize to my mom and then asked if he could to me. She told him that her and my dad would need to think about it all.

They told me that he had called...and I have to admit, my whole life I had been very curious! I had always said "If I could just have lunch with him, one time..." that would answer all my questions and fill that missing piece I felt for so long. I was never angry at him...I had a great life because he got out of the way...but I just wanted to know what he was like.

But...they decided NOT to let him contact me directly. I think he had my mother apologize for him...don't really remember because I didn't really care about it.

Not too long after this, my dad's heart problems got significantly worse. He died a month after having a heart attack and needing a transplant. He was only 39 and I was almost 19.

I could go into what being an only child in this situation is like...but that's another blog. About a year after my dad was gone, I sat my mom down and told her I was going to find Stan with or without her. I had already found her divorce papers and she had written his address down on the back from when he had contacted her. By the way, when I found the papers, I counted the months and saw that I was "illegitimate", which I had never known before. I didn't care...just found it funny since everyone I had ever met that knew my mom then told me how bad they teased her because she was so innocent.

I really AM getting to the story of Ben and I...but in order to understand it, people always want to know the back story.

My mom agreed to help me...in fact for a couple of months, only she talked on the phone to Stan. I think I wrote him a couple of letters but she talked to him. I was a little freaked out about it because they were a little TOO friendly I thought, but after meeting Stan, no worries at all!

I think they first talked around September and he came at Christmas to meet me. I have always been independant...so I arranged to meet him at a Coffee Shop, alone at first.

Okay, I'm not being ugly here, but let me just say, Stan is not the sort of person I would choose to spend time with. He's seriously kinda like a lounge lizard...even dresses like one. He as a little too touchy-feely for me, which immediately freaked me out. He was very clear that he wasn't going to be a father because he really wasn't into that...I told him that was fine, I had a great one and wasn't looking for this from him. We did drink our coffee the exact same way...which I thought was cool at the time.

Stan's visit went 'fine' except I was totally put off the touchiness...there's a long story about some stuff that had recently gone on in my life at this time that made this definitely more of an issue...but that's another blog too.

The best thing, in my opinion even then, about the whole deal with meeting Stan was I found out I had a little brother. Being an only child has many benefits, as any child from a family with siblings, will tell you! I am grateful for the experiences I had because of it...even being spoiled by being the only grand child. However, outside of finding Jesus, finding out I had a brother was probably the coolest thing that had happened to me at that point in my life. I was elated!

However, Stan had only been married to Ben's mom less than he had been married to mine...I think about 16-17 months. Stan lived in South Carolina and Ben lived in Maine with his mom. So, they didn't see each other all that often. Stan wasn't sure Elaine would go for the idea of letting Ben meet me, so I assumed I would have to wait until Ben was 18 before I could pursue it.

But actually, Elaine agreed! (I'll never stop thanking you, Elaine!) So that following Summer, when I was 20 and Ben was just 10, Stan brought Benjamin to Gatlingburg, Tn and my grandmother, Bo, and I drove up there to meet him. I was just thrilled!

I can remember clearly Bo and Stan talking and Stan being surprised at how great Ben and I got along! I think both of us were thrilled to find each other...and I bought him lots of stuff for good measure...ha ha...and there began a cool new relationship.

I can't recall how long we were there...must have been a long weekend. Ben went back to Maine and he and I would talk on the phone. Talking on the phone to a 10 year old boy was sometimes a challenge, but it was always such an amazing concept that I had a brother out there TO CALL.

For many years, I would fly Ben down to Memphis for a couple of weeks in the summer time. I'm not sure he always found it thrilling but it was always a joy to have him around and try to build our relationship.

By the way, neither one of us have much contact with Stan...I think its been over three years since either of us heard from him. It's more Stan's choice than ours and that's fine. Like I said before, I had a great father and a super grandfather so I don't have that need in my life. In reality, it is Stan who is missing out, not Ben and I.

Since we met, Ben and I have grown up a lot. Its much easier to talk to him as an adult now than it was back then. None of the sibling greeting cards work for us because we can't say "remember that time..." but truly, now that we live in New England, that is changing.

When we decided to leave Memphis, and eventually decided on Maine, we had never been there. We always brought Ben to us, so it was a little of a gamble...but its beautiful Maine...what's not to like. OKay, well if you have kept up with this blog, you know what I didn't like. However, he moved to New Hampshire with his job, a few months after we moved to Maine.

If I am honest, I kept telling people we weren't moving to Maine to be near Ben, that he was 'just a bonus'. That sort of statement probably seemed odd...I mean, so what if we did move here to be near him...but I was just trying to protect myself. When you lose so many family members, you are kinda afraid to have expectations and trust, and its not like Ben and I ever lived in the same place before. Truly, I was hanging my hat on finding "family" with him. Of course, I wouldn't have chosen for him to move to NH right after we got here, but he has become my "family" in the way I had hoped.

Last year, Ben and I got to spend our first Christmas together...he actually spent the night and everything...it was just so amazing to me. This year, I had the privilege of watching him become a father...which is just the most amazing honor! He's expanded our family, not just by baby Liam, but Kim and Nicolas, too. Kim is such a sweet gal and one of the loves of my True's life!

Then, this summer, shortly before we moved to Mass, I got to FINALLY meet his mother, Elaine! I was as nervous as meeting my mother-in-law the first time, but she is the most easy-going, down-to-earth gal and love being around her! Elaine and I talked about if she had still been married to Stan, she would have been my step-mother. So we decided, to our kids, she will be "Aunt Grammy" and they already love her!

Many of you will know that when I lost my mom (and the last living member of my 'root' family) that I was just heartbroken that my kids wont have grandparents. I guess now, they have been given a new grandma-type in their lives, even though she wouldn't try to replace my mom, God gives us new things.

It's funny how God works...I am sure my mom felt bad about some of her mistakes, although she would never equate my being here with one. I am sure if she had her way, she would have married Steve in the first place and had me with him. But we all know how God sees the plans way ahead of when we do. I now see my mom's decisions from her youth, as God's provision for me and my family now.

Within those mistakes, she has given me a new family. I believe that in any grieving, if you allow yourself to try, God gives you new dreams. Life isn't perfect and honestly, it rarely turns out the way we would have chosen for it to, but God gives us new dreams and provisions. It could be the death of a family member, as it has been for me many times or even the death of a dream job, a marriage, a picket fence...but God will give you new desires and he will fulfill those dreams.

I'm so thankful for the provision of Ben, Kim, Nicolas, Liam and Aunt Grammy! I'm even thankful that Stan is out there somewhere, even if he didn't parent us, he gave us each other and for that, I'm thankful.

To walk where he walked...

This weekend, our family had the privilege to walk in the UMDF (United Mitochondrial Disease Foundation) Fundraiser in Plymouth, Massachusetts. If for some reason, you do not know, our son Andrew died from "Mito" in 2003, just before he turned 7 years old.

Evidence of Andrew's disease didn't show up until he was five and a half...our diagnosis officially came five days before his 6th birthday. He never got to celebrate another one. It used to be thought that most every kid with Mito died. For years, doctors who understood Mitochondrial Diseases felt it was underdiagnosed. Now doctors know its linked to many things and are even calling Diabetes type II a Mitochondrial Disorder. Now that it is being identified better, its not always terminal, which is nice to see. Its not that there is a cure, there still isn't, but it means kids with milder presentations are being identified and they get better medical management, earlier.

We were one of the few families there who was participating in the walk without our "mito kid". He should have been there...he should always be with us. We had matching tshirts with his picture, people asked about them and him. It was nice to get to talk about him, but I always felt bad telling other people who were there to represent a mito kid they loved (who was still living) that ours didn't make it. We even met two families that adopt special needs children...which was great!

The most special thing about Plymouth is not that its where the Mayflower resides...or Plymouth Rock (which by the way, should be called Plymouth stone...its really quite small).

The most special thing is Andrew was here. Our sweet friends, the Tobins, who have two girls with mito live in Plymouth. The mom, Kerry and I met online and then at a UMDF convention in 2002. Kerry told me how great their specialist was...even though, at the time we were still waiting to find out if Andrew really had Mito. (Muscle biopsies take at least three months to get back.)

After we found out that Andrew truly did have it, we decided to see Dr Korson in Boston and Kerry offered to let us stay with her. So I have pictures of Andrew and Kerry's girls walking around the Plymouth waterfront. I have memories of this place we ate ice cream and where we stopped to look at boats and so forth. So Plymouth will always be special to me.

Our first trip to Boston was in August 2002. Our second was in January 2003. One of Kerry's girls was in the hospital that trip, so I stayed in a Hotel next to the hospital. But my connection to Plymouth continued. As you know, Andrew died in May of 2003.

This didn't end my attachment to Plymouth. After that UMDF conference, I formed a small web group of eight other mito moms. We called ourselves the MitoSisterhood! Between us, we have 20 children, 10 of which, have Mito. I'm sad to say that only four of those kids are still with us on earth...and with that, our group sorta faded away but we still have special connections.

In June of 2004, there was a fundraiser for Dr Korson's clinic and I was able to fly to Boston to participate. Again, Kerry hosted me and also five of the MitoSisterhood gals were able to get together for the fundraiser. We had a great time at Kerry's hanging out, all staying in Plymouth.

You may not know that we had Andrew cremated. I have only spread some of his ashes one time...it was that trip to Plymouth that I did this. I brought them to the tree on the Plymouth waterfront that I have Andrew's picture in front of and spread some there. Because Plymouth will always have a little Andrew for me in my heart, now it will in both the physical and the spiritual. The tree, is a physical marker of Andrew for me.

I finally got to bring Fred to Plymouth in 2006 when we brought True to see Dr Korson and were on our way to Maine to find a place to live. We stayed in Plymouth and I took a picture of Gaige, Bliss and True in front of that same tree...but Andrew should have been there too! He's always missing in every picture and I will never feel like I have a complete family picture because either True is missing (because he came after Andrew died) or Andrew is missing. But that tree, is like something that binds us together.

So being at the walk, in Plymouth, I had to take a look at the Tree when we went by...it really is unchanging and that brings me some peace. Walking for Mito in the place where Andrew was brought me peace and also a lot of reflective thoughts.

It wont be surprising that Fred and I have intended since this move to Mass to find a place as close to the Ocean as we possibly can! We love the peace of just being near the water and we want that daily if we can have it. When we moved here, there wasn't time to be picky about which town we ended up in, and we had tried to get near Fred's job, which didn't pan out. We are in an okay town but it doesn't have long-term potential in my mind. So, this weekend, our goal became to move to Plymouth.

The housing market is so steep here but we are going to try and find out how to make it happen. If not, I suppose we'll continue to rent, but I actually could buy a house in Plymouth. Leaving Memphis, where all of Andrew's life had been lived was hard in that my memories of him were almost exclusively there. So being in Plymouth gives me a little of that back.

Of course, Andrew is everywhere for us. A couple months before he died, once we knew he would, he asked me what a spirit was, hearing the word in a song on our radio. I explained it was the BEST part of who we are and you couldn't see it...but it was what made Andrew Andrew and Mommy Mommy. I told him no matter what, our spirits live forever. Being such a spiritually profound six year old, he said "Our spirits will live together forever, in our hearts". He said that many times thereafter. He does...and we do.

(the pics above are of my little ones in front of the tree in 2006 and then our trip to the same ice cream store with the Tobin girls that week...my picture of Andrew there must be in a box, but I will post it when I find it)

okay...so I got distracted...

well, I do that a lot...but it was for good reason! All the doctors, therapy and psychiatric appointments are starting.

So, I'm just going to sum up the rest of the story in quick statements...

God is good...he is faithful....he has to hit me over the head more than once a week to remind me of these things. In my stubborness he has provided beyond what we could ask or think...despite the fact that Fred's job fell through...see, not even having anxiety over that one!

Its nice to keep in mind that God is our provider and not a job or anything else. God is teaching me so much right now and I'm going to move on to more creative writing and ponderings now.

thanks for reading this and I hope you stay hooked!