Then and Now…

I can’t believe it’s been 15 years since the September day when our world changed in America.  For some reason, I have been more nostalgic than usual today about it. I was not directly affected and yet my life was changed. I was sitting at a stop light when my phone rang. I don’t really remember where I was headed.  My husband was calling to tell me he had been evacuated from the tower he was having a meeting in that morning. He was next to the IRS building in Cincinnati and there were still planes in the air at that time. I drove straight to my Dad and Mom’s house, where I didn’t let my eyes off the television for hours. Crying and praying, afraid for whatever was happening. A feeling I had never known in my lifetime.

I didn’t know anyone in those towers that day. I didn’t know anyone in the Pentagon, in Shanksville, PA or on any of the flights. I was just a young mom who suddenly realized the gravity of raising children in this world. (It was, for me, the beginning of realizing that we aren’t in control of life the way we’d like to believe). The beginning of God chipping away at my self-protection. The first step toward surrendering full control to the King of the Universe. Something I’d realize I need to do day by day, moment by moment for the rest of my life.

Perhaps this was the beginning of what has been a 15 year struggle with fear and anxiety in my life. Fear about more attacks on our county. Fear about war. Fear about flying. Fear about not making memories if we didn’t travel. Fear about whether my husband would wreck and die on his way to work each day. Fear about if my children would make it out of our home if we had a fire. Lot’s of fear about drowning. Irrational fears, rational fears, it didn’t matter, I have had them all. As I have reflected, I don’t remember a day that I struggled with fear before 9/11/2001.

A lot of life has gone by since that September day. This past year, God has been dealing with my heart surrounding my fear. Deaths, health problems, and injuries have forced me to come to grips with it. It is probably something I may battle my whole life, but I am most certainly in a different place. Not because I am strong, but because I am in a relationship with the One who is the strongest of ALL.

“Be strong in the Lord and in the strength of His might.” (Ephesians 6:10).

I have visibly watched God change my heart and mind.  Perhaps I’ll never be able to live without fear in the same way that I did before that day, but I am beginning to believe that I can. I’m choosing to each day. I can also point to a couple of things I tangibly changed in my life to take control of this area. I didn’t realize at the time that this was specifically planned by God to deliver me from my paralyzing fear. (I don’t list this as a prescription, but more as a documentary of what God did in me).

1. I began to practice gratitude. Even (especially) when I felt sorry for myself. Through making a list in a journal each day of things I am thankful for as well as being intentional about praying “in thanksgiving.”

2. I took action. By a step of faith, I started a very small ministry to some local kids who are growing up in poverty. As a person who came from that place myself, I had chosen to never look back when I “got out” (I had also been ignoring the Holy Spirit leading me to do this for a while). By focusing on the needs of others I was much more able to withstand the  difficulties I was facing in my own life.

Yesterday I read the most beautiful thing about this day of remembrance from Diana Oestrich at The Preemptive Love Coalition: “On September 11, we lost nearly 3000 precious lives. Our definition of security has been forever altered. Our children are looking to us for an answer to violence. They are looking to tell them how to walk in the precarious world they live in. What are we going to tell them?  Let’s tell them how the terrorists tried to unmake us- and how, in response, we choose to love harder.”

Instead of focussing on the revenge that we as a nation promised to make on this horrible act, let’s point our children to the response of how we Americans came together and loved each other better (for a while). This has caused me to reflect upon where we are currently as a nation.  I see a lot of fear, pain, anger and insensitivity toward others. Maybe we can take this day to apply that same lesson to our current state of affairs. We can listen and console one another’s pain (racism) instead of telling our fellow Americans to “get over it.” Maybe we can get up and take action against the things that burden our hearts (poverty, addiction, abortion etc.) instead of just complaining about them and expecting others to do the actual work of change.

How has this day of remembrance affected you?

 

 

The best laid plans

Five blog posts in a year is not exactly how I recommend starting a blog. I am amazed that anyone continues to read this little thing at all but I sure do love to write. In fact, I’ve been doing a little writing on the side (yay) and I’m so excited to be working on those projects. I sent 4/5 of my children (does anyone else refer to their children in fractions?) off to school today and the littlest one starts in two more days….so I’ve spent my morning making a weekly schedule to be sure I get everything accomplished each day. If there is anything I am absolutely certain of it is that things WILL NOT go according to my plan.

The best laid plans are just that. My plans. I have accepted many changes to my plans over the years. The timing of all 5 living children (never happened in my plan), deaths of parents and babies gone to heaven too early, even our career paths have changed from our original plans. Nevertheless, God has led us sweetly, and sometimes quietly, through each change, along with all the bitter twists and turns. The hopelessness and grief turned to growth and depth of character and eventual surrender to accepting His plan over my own. In light of those things, we are choosing to trust this new twist.

The fall is pretty much a football filled season in our home. We LOVE it. We love the Buckeyes, and we love the Lebanon Warriors (Our daughter is a high school cheerleader). We have an especially fond place in our hearts though for the 6th grade Maroon Youth Football players. We have been together for 5 years and our son who is on the team, just shines during football season. It is by far his favorite sport. This year he actually cross- trained a bit in preparation for gaining some speed and better movement for him as he runs the ball. He also trained with a kicking coach to continue to work on his kicking skills. (we really want him to be a kicker and he has made some clutch extra points in his few years)! Not only do we love watching him play, but we love how the discipline of football has helped shape him into the young man he is becoming.

August 2013 269
early in youth football

After a summer with very little structure he has been longing for football season (and school for that matter) because he NEEDS structure. He doesn’t love lots of free time. He is the opposite of all of our other children on this matter…Anyway, He exploded into the new season about a month ago and was so excited to end his youth football “career” with an amazing season. As the rules go, in Ohio you must follow a strict plan for conditioning before you wear pads and then eventually light contact to full contact. Our program teaches “heads up” youth ball and is very aggressive at teaching this tackling method to prevent injuries. (I’m sure you see where I’m going with this). Unfortunately, on his first play in practice on day one of contact, he lowered his head and hit his teammate (NOT what you’re supposed to do). It is an instinctual reaction. Almost all players do it on occasion and it is the worst thing you can do when making a tackle. He felt immediate pain in his upper back and my husband (who is an assistant coach) knew the possibilities of what had just happened. Thankfully there was no numbness and otherwise seemed like he had probably pulled a muscle. They came home and rested, & iced.  This is a kid who hasn’t ever had an injury that kept him from playing, not even a sprained finger. We agreed that he should get looked at since it was his back and he was having some pain.

He was very fortunate. Not every kid is as fortunate. He fractured his t4 vertebrae and doesn’t seem to have nerve involvement at this time. Had this happened in a game, I’d be writing a very different story.   The hits are much harder in a game and he is a hard hitter. Had we not checked it out, he would’ve gone to practice that night and I’d be writing a different story. He wasn’t in a lot of pain so he was able to leave with a brace and rest for several weeks. He has found that standing or walking makes the pain worse. Otherwise he seems to be healing well. He will be following up with a Sports Medicine Doctor until he is fully released. We expect it to take 4-6 weeks best case scenario.

I walked across the field on 6th grade parent night with tears. I think the three of us were collectively holding our breath wondering if this was it for football for him.  On one hand I’m thinking  “it’s just sports, thank goodness he is alive and not paralyzed, Kelli get a grip.” on the other hand I’m thinking, “man, I am so sad for him. He may have to give up the thing he loves the most.”

I could go 100 different ways with this blog post: Why are sports this important in our culture? Why can’t I just be thankful that he is healthy and should make a full recovery? Should youth contact sports be banned? Is football an idol (something I place before God) in my life? But the thing weighing most heavily on me is how hard it is to watch my child experience the loss of something he loves.

He has handled this all with grace. He hasn’t really complained, he has mostly been sad. He has had to start the school year by sitting in the classroom or office during recess. He has to miss gym, and he has to constantly walk carefully without even a jog or a jump. Anyone who knows him knows this is a nearly impossible task. He has sat or stood on the sideline of two games and countless practices in rain and in heat to cheer his team on wishing so badly he was out there playing.

I know why he is sad and I know why I’m secretly sad. I’m afraid he will never be released to play again.  Anything can happen at any time, but shouldn’t we be grateful and move on?  He is a little lost without a sport for a physical outlet. I am fighting back tears when I watch the team play on without him. (I know it is ridiculous). The question I keep hearing in my head is this: What would be so bad if football is lost? And the answer I keep hearing is: “Kelli, this is the stuff in life that makes us who we are.”

This is the stuff that God uses from our broken world to transform lives and ultimately bring deeper satisfaction and joy to us if we lean into it. Our son may grow from this and continue to play for years, or he may not. I have no idea. (pray for wisdom please). But either way, this will no doubt be part of his story. The “near serious” injury that makes you rethink what you’re doing. The time you begin to be aware that our lives aren’t always safe from harm. The very thing I pray for my kids to experience. The moments when the faith our family shares becomes their own faith.

Garrett has planned since he was one year old that he would one day play for The Ohio State Buckeyes, he is a big kid and has pretty much craved tackling people since he was born.  He has worked hard to use his natural born athletic abilities and we would love nothing more than to help him chase that dream (even if it is far fetched). At the very least, he has looked forward to many Friday night lights on the turf as a high school player. This injury was not part of the plan. I didn’t see it coming and I’m kinda stunned at the twist. I’m shocked at my heart’s response to it. (I probably need to deal with how important it is to me)…and I once again need to open my grip and allow my kid’s lives to be lived. To allow God to work and move and grow them into the people he wants them to be.

Do you have any plans you are holding too tightly? Do you have a great story of how God used a challenging, surprising change to work for the good in your life? I’d love to hear it. Hearing stories of God’s faithfulness to others can be very inspiring for me to trust in these uncertain moments.

 

 

 

 

 

Speaking of Trust…

This last few weeks have been a whirlwind. My emotions have been all over the place. The decisions made about my lung tumor, were emotionally exhausting, and for the first time, my oldest daughter expressed a bit of fear about my health. (The kids are pretty used to crazy health problems in our home, and they usually don’t bat an eye when something new is discovered).

I also, FINALLY had a procedure for chronic lower back pain that produced the first results I have had in three years. I can’t express the joy I felt that I may become totally pain free once again. I have had many days over the past few years where I was so overwhelmed at the idea of living in chronic pain forever….it was a mental and physical relief that I can’t adequately put into words. I can definitely see how chronic pain leads to depression and despair. It took many doctor’s visits, scans, and blood draws to find the problem (which is apparently a specific type of arthritis in my SI joints and spine and “normal” degenerative disks for my age).

We arrived home from the hospital to find our huge, beautiful, favorite, only, tree had fallen from a wind storm. While it was so sad, we immediately realized that because of my procedure, our van was not smashed (nor any of the people who normally get in and out around that time of day). It was a great reminder that life is fragile and we were spared that day. *I have since heard two different friends on Facebook share about tree accidents killing their loved ones. It could’ve easily been us.

The cleanup of the tree was a lot of work, and friends and family pulled together to help us out. We appreciate how we live in a community and are part of a church that really supports each other. During the process of cleaning up, my husband’s back pain became excruciating. (Because of the type of Cerebral Palsy he has, he is at a high risk for herniated disks in his spine. The right side of his body is spastic and very tight, pushing the spine left, creating curvature, and protruding disks. He has dealt with this as long as he can remember. The pain comes and goes and he knows exactly how to persevere through it).

This time was different. The severe pain has lasted several weeks, and he decided to look further into it. His latest MRI was significantly changed since his last one. We have been learning that while his CP doesn’t progress throughout life, the changes to his body progress much faster than an average aging adult. We met with doctors recently to discuss a plan for his treatment. His long term options are most likely going to be a little different due to his CP.

Some things I have learned from him:

1.He is so optimistic that he never looks at the (realistic) prognosis of his condition. He truly lives for each day and is very thankful.

2.He trusts God’s plan for his life without question.

3.He never considers giving up and letting his disability define him.

A good friend reminded me this past week that most likely his optimistic outlook (rather than being realistic like me) is probably what has allowed him to live such a fulfilling life instead of deciding 25 years ago that he had too many limitations to follow his dreams. I am so glad he is my partner in life. He is so good for me. I am challenged by him and how he lives inspires so many people, even outside of our family.

I’m not exactly sure why our family has the health challenges that we do, and why they seem to always be chronic in nature (as opposed to temporary). I can be very fearful of how to take care of everyone when my own health faces uncertainty because of all my tumors and autoimmune conditions, then there is Justin’s CP & spine issues, and Cooper’s immune deficiency. I like structure, beginnings and endings (closure)…NONE of these problems have closure in this lifetime. I am in a daily struggle to trust God with the “open ended” life he has called me to. We never really have a plan, and things are always changing, but his mercy for me is new each day. He doesn’t really give the grace to handle the whole next 50 years, it’s just to handle today, and then more to handle tomorrow.

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” -2 Corinthians 12:9

** update on this post: Justin ended up getting some lumbar epidural injections in his disks and then emergency back surgery not long ago.More on that soon. He is in the rehab phase and doing much better. The Peyton’s are keeping the Pain Clinics and Neurosurgeons in business!

And So we Wait…..

The phone call came last Monday (for anyone who is curious) that the lung cancer center’s  “tumor board” decided to wait six months and re-scan my lungs.  At the current moment, I am so relieved after learning about that surgery, but I am CERTAIN that over the next six months, I will freak out at some point. Wondering if it is growing or staying the same. Malignant or benign, if it grows the surgery will happen.

This is the whole…”day by day,” “hour by hour,” “moment by moment” trust thing that I am learning.  Here is my chance to live that out. Again.  I’m pretty sure it won’t be the last either. I do it pretty easily each day, when I send my kids to school, or my husband drives off to work…I have no idea what is around the corner. (Now, to be fair, sometimes I get anxious about these things too). None of us can know our future or what unexpected thing will happen that day. Learning to live (with a tumor in my lung) needs to be like going about my regular day.

I’m not there yet. But that is the goal. Total trust.

Learning to become good at waiting…

Rest, Patience, peace, lack of control, uncertainty…these are not words that describe me. I am anxious by (sinful) nature, I like lots of information, and I like to be in control. I’ve written before on how Cooper’s illness has taught me to loosen my grip a little bit each year realizing how little control I really have. Apparently I like the illusion of control anyway.

When my mom learned that her cancer had metastasized to her lymph nodes, she was quite peaceful. I was a wreck. She and I would talk about how calm she was and she kept saying that there wasn’t anything she could do about it. I was in awe of her ability to trust God and her medical team through it all. She really was strong. My grandmother had been exactly the same. Only once did I ever see her cry over her cancer. During her first bout, she drove herself to appointments and maintained composure through terrible reactions to the chemotherapy. The only time I saw her cry was in the last week of her battle, she was telling us she was finished fighting. I did not inherit their ability to be strong. I am a mess. I freak out and think of all the most awful outcomes. I am a wimp to the pain, and I complain so much. Do I need to go on?

I shared six months ago here about all my “tumors” and the future monitoring of said tumors. I can not fully explain how these past six months have passed and I have had a supernatural peace that is NOT from me. I guess it’s a little bit of the idea that I can’t personally do anything to change the situation, but also a time of growth for me with my battle with anxiety. As the time came for my scans a few weeks ago, I was more freaked out that I’d like to admit. I made it through the breast MRI (with good drugs and lots of prayer) and received good news of “no change in the concerning area” but we will continue to scan every 6 months. My liver mass was also no change! (YAY!)

My lung was a little different. My CT showed a little bit of growth in the nodule so I saw a surgeon on Monday about a biopsy. I was kind of relieved to get some answers, however the appointment didn’t go how I planned. There were no definitive answers and maybe not for a while still. The surgeon was nice and compassionate, and very honest about how difficult the surgery would be. A thoracic surgery is NO JOKE people. ICU, long hospital stay and chest tubes….6-12 week recovery… There is no way to differentiate a benign and malignant tumor (in my particular case) without surgery, BUT, because it is small and because it only grew 2 mm in six months, she thinks she wants to wait and re-scan it in six more months. Whatever it is, it is slow growing, and small. The “tumor board” (thoracic oncology surgeons and radiologists) will meet tomorrow to decide if I have surgery or wait six months.

I left the appointment upset. I am not sure what I wanted. It definitely could’ve gone way worse. They could’ve said they knew for sure it was cancer and surgery was imminent, but instead I’m pretty sure I’m going to wait longer for answers. I have to say, I have continued to have a great experience at the UC Hospital, and I do really trust this surgeon….it wasn’t that. It’s the unknown and living without answers in so many areas of life that is SO HARD for me. The idea is so mentally exhausting that I will have to continue to not be anxious. I cried. I lost it a bit on the way home. I was mad about how hard life is, and then the anxiety hit me again. Thankfully throughout the evening I learned more about the situation (because I read the big bad internet) and I talked through how awful the surgery would be with a nurse friend. I realized that waiting in this situation (if that is the decision) will be ok. I went to bed praying.

I was pleasantly surprised to wake up this morning at peace. Immediately the verse from lamentations 3 came to my mind. “The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning; great is your faithfulness.” (verses 22-23).  Something that has become evident to me over the past six months is that anxiety is not just my “nature” it is really sin. It is in fact, choosing NOT to trust God with whatever he has allowed for my life. I say that from a place of total understanding, not judgement. I know some people may disagree with me but the Bible (which is my authority as a Christ follower) is pretty clear on this one:

“Be anxious for nothing” – Philippians 4:6

“Which of you by being anxious, can add a single hour to his span of life?”-Luke 12:25.

“Trust in the Lord with all of your heart, lean not on your own understanding. In all of your ways, acknowledge Him and He will make your path straight.”

– Proverbs 3:5-6

For me, this has been an area of growth opportunity, throughout my life, but especially in these past 6 months. I never really called “anxiety” a sin, therefore, I kept carrying it around with me. Worry, panic attacks, etc. Instead of confessing it to the Lord, I justified it as just “who I am”…I didn’t really do this on purpose, I just never really thought of it as a sin. But do we allow that with any other sin? “Oh, I’m just a liar by nature”…”I just love to gossip, it’s who I am!” I don’t think so.

I am just learning that there is also a spiritual element when it comes to many facets of mental health. I am not an expert, a psychiatrist, a psychologist, a counselor, or a pastor of any kind, I am just giving my opinion based on my personal experience. If you are a follower of Jesus, then “we can confess our sins and He is faithful and just to forgive us of all unrighteousness.” (1 John 1:9). I have genuinely found this to lead me to freedom.  Not free from ever worrying, or being tempted to worry (obviously- as noted by my total freak out yesterday), but freedom in being honest about my struggle and having peace that I can trust God’s plan, even if it is not what I want to happen. Even if it includes the most awful things I can think of. Peace that quite honestly I can’t explain.

Do you struggle with anxiety? I challenge you to join me and confess it to God. Ask him for help in trusting His plan.

*I AM NOT SAYING…that anxiety is only a spiritual problem. I firmly believe it is physical, mental, (and a real medical concern). I am an advocate for mental health to be recognized the same as physical health. There is definitely a time and place for medical treatment, for me and for anyone else struggling, if it becomes necessary. I would never recommend a diabetic to refuse medication and pray harder to treat their medical condition, or a person to refuse to cast a broken leg. I am so incredibly thankful for the many medical advancements God has provided in our society.

Finding the Blessings…

Last fall, I was reeling in my mom’s cancer diagnosis, taking life one day at a time, feeling stretched way beyond my “capacity.” Before that it had been years grieving babies lost and dealing with my son’s medical diagnosis. Before that it had been infertility, and before that it had been losing my husband’s mom so young… I kept telling myself that “this (trial) is just a phase.”  A friend put it nicely to me recently by saying, “at some point you realize that this isn’t a phase, it’s my life.” For some reason, this IS my adult life. God has a plan higher than mine, and it has involved things not always going smoothly or comfortably for us.

A couple of years ago, I thought I was at the end of that “phase.” Like for some reason, my life was going to just be uneventful from there on out…not so much. Life has continued to surprise me. My mom’s battle with breast cancer last year was just a new chapter. Then there was my own unfortunate discovery of (benign- praise God) tumors in my breast, lung, liver and bones, and the follow up that has gone with that.

God surprisingly, has opened my eyes to something interesting lately. Something that has happened in my life between all those events. It seems like on the outside that one event flows right into the next, but when I go back and really think about it, I am amazed at just how much God goes out of His way to show us His plan and bless us.

When Justin’s mom died suddenly and we had a 4 week old newborn baby, we jumped on a plane with our firstborn baby and flew straight to Oklahoma. We had to wrap up her whole life, go through her belongings, plan and preach (Justin) her funeral in one week. Then we hopped on a plane and flew to her home in Southern California to scatter her ashes with her brother and his family. Back home in Columbus, Ohio, our church, and young married friends were busy raising money for us to pay for all this crazy unexpected stuff that our young newly married/newly “one income” family was not prepared for. We were so surprised and felt incredibly loved. A small thing that still ministers to me 18 years later when I begin to doubt God’s provision.

About a year later when I was struggling through secondary infertility, I met a friend who was also going through infertility. She had no children yet and we were introduced at church by a mutual friend. Angela and I were able to encourage one another, and pray for one another through such a tough time.  Having a friend who really understood my circumstance was priceless.  Through a divine blessing we both got pregnant within two months and had boys.  Thirteen years later even though now separated by a 9 hour drive, she is still one of my very best friends.  My stay at home years were shaped and influenced incredibly by our conversations, advice and encouragement over these 13 years. I wouldn’t trade those years of infertility for anything because it brought me her friendship.

During the years where we lost five babies, I’m not going to lie, it was rough. There were not a lot of those moments of provision or blessing. It was often that I felt like God was being silent. Since then I have been blessed with many friends who I met through the ordeal, as well as the blessing of sharing in that grief with friends who are going through it. One thing that stands out to me is the God allowed us to “re-meet” someone who had been my nurse during the surgery I had with one of my first miscarriages. She was later a nurse at children’s hospital, she recalled Justin sharing Christ with her and giving her hope for her son who was very far from God. God didn’t have to let us know that. I believe we will all hear many stories like that in Heaven. Not too often this side of Heaven will we get to have a glimpse into the “Big Picture”.

When Cooper got sick, one friend in particular encouraged me to get re-connected to other women in Bible Study. I had let this go during those few years frankly because I was mad at God. I promised her I would pray about it, and within two days I had been “randomly”invited to join a women’s group. I was sort of terrified to join this group and be real about where I was at spiritually, but it has been more than a blessing to me. I’ve never been involved in a group quite like this. We pray for things – and God seems to respond quickly. We come alongside each other in acts of service and spur one another on with truth and love.  It has helped to drag me out of the pit of depression and anger I was in. Now that I am in a healthier place, Cooper’s medical condition hasn’t changed, my perspective has though.  When I am struggling with trusting God (which is often), I am surrounded with friends who will remind me of the truth. The other interesting thing about community is that I see what my friends are going through. It is ridiculous to add up all the difficult circumstances that make up our group. I think when you’re in the “pit of despair” it is so easy to be completely self absorbed (and quite understandable), but personally I think that is why the Bible is loaded with examples of community (Acts 2:45-47). We can’t thrive well when we are so focused on ourselves.

It has been a wonderful journey lately to remember these “in-between” blessings. I have had months and years when I didn’t think another blessing would ever come our way, but they always do. Maybe to shower me with grace to comfort what we have just passed through? Maybe to prepare me for what is coming up ahead? I’m not really sure.  I’m guessing we all have these “trials” in our lives, however different they may be. I am also guessing we all have the showers of blessing that come between those downpours reminding us that our Heavenly Father hasn’t left us. I am finding as the Lord brings to mind the blessings he has poured out on us over the years, the trials seem to fade to the background. They are part of us, they won’t ever be gone, and that is okay. They are less though as He becomes more in my life.

If you are at one of those places in life right now where you are feeling like your life is consumed with hardship, I challenge you to go back and recall the blessings. They may have taken place without you even realizing it in the midst of all the pain…

Time to Re-Focus

Oh, how silly I was to think I would have more free time once school got started back…that is always the case.  Leaves are falling, the air is cooler, and report cards came home. The first quarter is over already! Life continues to move right along….sometimes I am so busy with the everyday things like laundry, cleaning, cooking, planning, paying bills, that I want a moment to come up for air. Re-group, take a deep breath, and start over, but I’m constantly just trying to get through the day’s agenda.

This fall has been a journey for me to remember that I can do that. I can stop the day, re-focus my eyes on Christ, and get back at it.  I have been reading the book One Thousand Gifts, by Ann Voskamp and trying to practice gratitude in an effort to get my joy back! I have been reading it with a girlfriend who has been through her fair share of “joy stealing” life circumstances. It has been so good for me to honestly take some ownership of my attitude and return my focus back to what God is doing in the world around me and less on my own tiny corner of it all. I have been very surprised how much my perspective plays into my joy, or rather, how I can control my perspective. Perhaps the most impacting is how my attitude sets the tone for my family each morning. We still have our moments for sure but it has been a really good start to the school year.

I am trying to do a few things:

  1. Slow down- I don’t have to be at everything or involved in everything.
  2. Enjoy the moment with my kids and husband – maybe even playing catch, riding bikes, coffee with my daughter, or doing a craft,  most importantly BE DEVICE FREE when we are all together.
  3.  Do not neglect spending time with God- whether in His Word or Prayer, nothing I do is more important and yet pretty much everything can take a priority over this. I need it. I am not in tune with what God wants me to do each day without it. (Sometimes that means my Bible study goes with me to work on in the carpool line while we wait for school to start).
  4. Per the book, I am recording my “1000 gifts” – things I am grateful for each day until I get to 1000. It really is an interesting concept, even being thankful for the smallest things gets you on the lookout for things to appreciate rather than things that aren’t going well.
  5. Focus on others more, even though my world is crazy busy – It is very refreshing to look to the needs of others and serve…it helps to give a tremendous perspective.

Thanks for continuing to read here even though my posts are few and far between lately. Feel free to tell me, What are some ways you “Re-focus?”

To the Mothers at the end of the School Year

I was parked at preschool pick-up this past week and noticed some younger pregnant moms walking by to get to their cars with their preschoolers.  I remember those day so well. It seemed so hard and exhausting. Changing diapers, living on very little sleep, and meeting up with friends for play dates at the park every chance I could get.  Throwing baby showers every couple months, while my friends and I had baby after baby was the way of life.  Juggling work and family.  Making homemade baby food. Ensuring there was enough “tummy time” for the baby. Sometimes these little things overwhelmed me. Let’s just get it out there, my kids didn’t do very well at the library story time, so I needed to find ways to make sure I was doing crafts and reading to my kiddos every chance we could get.  Everyone told me how this stage was “easy,” they missed it, and that I should soak it up, because the days were fleeting. While I couldn’t believe them then, they were right.

I’m glad I didn’t know what was to come though.  I don’t think you can fully be prepared for the gut-wrenching days ahead when you begin to realize how quickly these years will go. I honestly, can hardly remember what if felt like to be pregnant. (It seems like a long time ago, even though my youngest is only 4 1/2). I could never dream of that phase really ending. I really dragged it out with 9 pregnancies over 10 years too…so I made sure I was really ready to move on! I loved those years, but I looked ahead quite a bit, looking forward to sleeping more, and getting back in shape again maybe.

The elementary years added a whole new meaning to time management.  Days, weeks, and years sometimes go by before we realized we were barely treading water as parents. The homework, the school performances, conferences, worrying about their education and making hard decisions. Oh the hard decisions.  Will they take music lessons? Which instrument? Should we make them, or let them choose? Then there is the introduction to youth sports (which kinda needs it’s own post). Will they play soccer, baseball, flag football, cheerleading, tackle football, dance, lacrosse, or basketball…will they join a “select” team?  Yikes. I think you see where I am going with this. Multiply that selection by how many kids you have, in our case five and you have entered CRAZY TOWN! (It is so hard to juggle life and teach your kids to make priorities, without getting sucked into this current standard of letting them do everything. We have not mastered this in any possible way. Our best efforts have been to limit each child to one activity per “season” and so far only two activities per child). Teams these days play a ridiculous number of games, so each season rolls right into the next and before you know it a whole year has passed.  I am begging you moms in the elementary years (and totally talking to myself still here with my younger kids) PLEASE make the most of every day because the time is fleeting.

I would tell you about the junior high days but, I blinked and they were over. No, seriously, all I remember about those days was the class trip to Washington DC, without cell phones. (Those were the rules here). We couldn’t talk or check in, it was just a week without my baby girl teenager, and I think that is when it set in.  Reality that these “moments of letting go” were just about to get real.

High school began for us this past year. Now our oldest is finishing up freshman year. Like that.  The little moments of letting go have suddenly started happening almost daily.  Dating dilemmas, riding in cars with other teenagers, taking driver’s Ed….little moments of letting go. So many great memories being built and yet so many days I wish I could do-over because I didn’t like the outcome. I LOVE having a teenager honestly, it has been an awesome experience for us so far, however the words “college visit” and “driver’s license” make my stomach hurt.

I am so proud of my kids, but I can’t help but admit that sometimes I go to bed at night wondering if we have really prepared them for the real world. Will they remember to work hard, and never give up?  Will they give 100% to their studies or will they waste their time in college?  Will they fully embrace the faith we have taught them, and run with it, or will they let it go stagnant and fade away? Will they come home and visit, or move on and forget how much I long to see them. We do still have a few more years together, but as you can see, they’ll be gone in a flash as well.

Mothers, as this school year winds down,please make the most of every day because the days are fleeting!  They are seriously flying by! It seems like we were just heading back to school and now we’re opening up all the swimming pools and planning summer vacation again.  As they always say, the days are long and the years are short. I promise you’ll be reflecting on this very thing before you know it.

To the rest of us who are already whisked away in this downward momentum that won’t stop, we can take this day captive too! It is never too late to grab some quality time with your kids. To make the most of every day.  Ask some open ended questions in the car ride home.  Try to make a couple dinners where you can sit around the table together. Go around and share your high and low of the day. Most importantly, we try to do family devotions before bed every night no matter how late they are getting in bed (which has been very late the last few nights). I know it’s so hard to do, but you can never regret spending time together as a family.

When my husband used to work managing a bank, he often with elderly customers. They would sometimes be closing accounts or making changes because their spouse had just passed away. He would almost always ask for words of wisdom and advice. Every single time, they would tell him things like:

“….spend more time with your family.”

” …Don’t work too much.”

” …You can never get the time back.”

They never said to spend more time away, be busier, do more, or make your career your top priority. It is so hard to keep this focus as a parent in our current society. I’m guessing each society has had it’s challenges and parents have always had choices to make every time that would either unite or divide their family.

For us, we have had a particularly rough 12 months. A lot of travel, a lot of stress, a couple of health crisis, a lot of change, and a lot of …BUSY!  I am beginning my summer home with my kids in a few days. I usually try to plan some strategies for making the most of our time together. (Last year we did not make any plan and it was chaos). This year I am thinking about a few ideas that are different. Maybe it’ll be a total bust, but maybe it’ll be awesome!

1. Cooking together. My kids are eager to learn to cook and bake. Maybe I should actually let them instead of micromanaging the kitchen? Maybe we could take turns making the family dinner each night? For some reason, my older kids are very excited about this, which surprised me.  I am hoping it will help them realize what goes into the meal we eat and maybe they’ll be a little more willing to try new things.

2. Chores together. They need them! I want them to learn to do laundry and clean up after themselves. I want them to be prepared for independence. They are well on their way, but they have a lot to learn still.  Quite honestly, I have micromanaged this area too much as well, not liking how they load the dishwasher or sweep the floor. (I sometimes catch a little guilt from friends who think I ask too much of my children, but I am convinced it is necessary. Not because I can’t do it all, but because I want them to know how. I try to convey that message to them, lest they get frustrated with me when many of their friends don’t have the same philosophy in their homes).

3. Learning together. I always give my kids an incentive to read books of my selection each summer, but this year I also want to go back to reading aloud together. A couple of things. One book about church history, and one book about God’s heart for racial reconciliation. Things that are very relevant today in our culture. Things they won’t be learning in public school (which I am okay with, because it’s my job as a parent not the school’s job to teach them).

I’d love to hear your ideas for making the most of every day together!

“Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away.”

– James 4:14

The Merry Go Round

We had this really amazing home nurse named Terri a few years ago when our son Cooper was first sick.  She came once a week to change his PICC dressing, check vitals and make sure he was doing ok at home.  (Eventually she taught me to do this myself).  I was so overwhelmed with a newborn and a newly diagnosed (Primary Immune Deficiency)  son who was fighting an EBV infection. Life had been a whirlwind for a few weeks between hospital stays and learning to flush IV lines.  Friends were bringing us meals, sending cards and calling to check in, and then suddenly life went back to normal… for everyone else.  And I was so isolated and lonely.

I told Terri about it one day.  You see, Nurse Terri’s daughter was a college student in the middle of battling lymphoma at the same time that she was being our nurse.  (Can you imagine?) She was so good for me.  I needed someone in my life who understood the terrifying moment I was in.  She more than understood.  She told me how life was like a “Merry Go Round.”  We are all on it going around and around until a tragedy strikes, then we get off.  A few friends may get off with us for a while but there comes a day when they have to get back on…back to their own lives.  But you have to stay off until you’re ready to get back on.  It is unrealistic to expect everyone to stay off with you.  But one day you are ready to jump back on…and get back into your new “normal.”

I have thought about this analogy so many times.  Maybe it isn’t really that earth shattering for you, but for me it was very true.  It was true when Cooper was sick, it was true when my Grandma was dying. It was true when my mom was battling cancer last year….and it is true today.  When we are grief -stricken or terrified for the future, whatever the cause I know I kinda want time to stand still for everyone else too…I don’t want to miss anything and I don’t want to feel isolated. I have learned first hand, however, and observed in others that we are really the only ones who can walk the path before us.  Does that make any sense?  We all have our own personal journey.  Don’t get me wrong, I am so thankful that God made us relational beings who need each other, because I don’t know what I’d do without my friends and family. But, we all experience things in life differently.  God has used all of these twists and turns in my life to make me who I am today.

Throughout this past month I know hundreds of friends and acquaintances have been praying for me.  You’ve been sending me messages and notes, texts and phone calls and flowers. I feel so loved and cared for.  Those closest to me have endured hours of rambling about all my fears and have watched my kids for countless hours.  My parents have picked my kids up from school for me so many times because of all the appointments.  I am so thankful.  Our world has briefly stood still around here as we held our breath and waited for test results.

My lung and liver tumors both showed signs of being benign.  Combined with the fact that I have no apparent symptoms to these tumors they will be re-scanned in 3 months.  My breast biopsy Monday came back benign thankfully.  I have some atypical cells and was asked to consider a “chemo-prevention” pill I’d take for some amount of years (sounds too scary).  And of course I am also considering prophylactic surgery since I keep having these problems,  (this was my 6th breast biopsy). All of these things are full of risks and I’m not sure what I’ll do honestly. Lastly, I am having a bone scan this coming week to look at the tumors in my bones.  This is the only thing that has actually been causing me pain.  I have had chronic pain in my hips for the last year.  I was sure I had arthritis or a herniated disk.  I do have disk degeneration but the tumors are a bit more worrisome.  The doctor said a bone biopsy is probably in the works. Either way, it appears that the tumors are causing me the pain. I am ready to get answers, but I’m not sure I really want to know any more…

So, while we hang out off the “Merry Go Round” for a while, I am so thankful for how God has prepared us for this moment.  We have been through other circumstances that have prepared us for this one.  I’m thankful that we are not crushed, by this current affliction. We are not driven to despair.  This reminds me of 2 Corinthians 4:7-18… (take some time to read the whole thing if you can, but keep in mind, Paul is referencing being persecuted for your faith. It just reminds me of how our bodies are temporary and yet we are living for eternity).

“… Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison. as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” -v. 16-18

Waiting well or not?

I have waited a lot in the past.  I waited for summer break as a kid, waited for an acceptance letter to college, waited for Mr. right (totally worth the wait, by the way!) and I have waited many times to have a positive pregnancy test, and I mean many times if you consider that I have actually been pregnant 9 times. It is not something I am good at. Don’t get me wrong, I consider myself a patient person. Traffic doesn’t bother me, my kids can get pretty crazy before they bother me, waiting in long lines doesn’t bother me, even Christmas at the mall doesn’t bother me. Unexplained scary medical stuff is where I draw the line.  It bothers me.

Right now I am waiting impatiently.  I have had several health problems acting up in recent months and now I am waiting for some test results.  Mostly I have had pain in my back, and hips, and also a crazy eye dryness problem that seems to be autoimmune.  I finally broke down and went to the rheumatologist this past week, and he ran every possible blood test I believe.  He was looking for any cause for the widespread pain and eye problems.  He ordered 12 x-rays to look at my joints more closely.  I will officially meet with him to go over results next week.  His office called and changed my appointment a few days ago to a longer time slot, because he needs “more time” with me.  I got the report for my x-rays and I can already tell they will order a bone scan to look at some abnormal spots in my femur and pelvis. If only that were the only scan that has revealed unsettling news lately.

Because of my strong family history of breast cancer and my personal history of having 4 breast biopsies in the past, I now “qualify” to get breast MRI’s every 6 months.  Lucky me! This current madness started in September, when I had my first MRI and a “non-Mass enhancement” was found. I was assured that worst case this is some type of a carcinoma in-situ (not infiltrating yet).  They attempted a biopsy in December and were not successful in finding the area.  It is on my chest wall.  They wanted to re-scan me in March.  In March, I did another MRI and the area was still there as well as another non-mass enhancement in the same breast.  Incidentally, they saw a nodule in my lung that wasn’t found on previous scans.  They requested a more detailed CT of my lungs.  That scan confirmed the lung nodule and also found a 3 cm lesion on my liver.  I can’t believe this. *On a note of good news, the lung nodule had some features that make them believe it is benign.  But they can’t say for sure without follow up scans.

So, to summarize, I have 2 non-mass enhancements in my breast,  several “spots on my bones,” a 3 cm. lesion on my liver, and a 1 cm. nodule on my lung. BUT all four areas of concern could be benign or they could be cancer. They are all marked “suspicious” on my various reports. Personally, I am deeply regretting getting the breast MRI in the first place.  Sort of.  It is really hard to balance being a wife and mother of five and taking care of myself.  All of these tests are very time consuming and they seem to lead to more tests and no answers. Yet, is it responsible of me as a wife and mother to not take care of myself?  I want to be around for them. I want to be able to detect breast cancer earlier than my mother and grandmother did.  They went for regular mammograms and yet it was too late.  Their cancer had already spread to lymph nodes.  My grandmothers primary doctor brushed her leg pain off and it was actually metastatic cancer and it has spread everywhere before they realized it.

My breast surgeon is concerned, while my primary doctor seems very laid back. Maybe he is just trying to calm me down since the process takes SO LONG to figure out.  He says radiologists are really conservative, so they say everything is suspicious.  He thinks they may all be benign and I may just be a person who makes adenomas (a type benign tumor, so far I have had 6 removed from my breast, leg, and mouth so it’s a pretty good theory)…and they’ll just remove these new ones if they become symptomatic.  If they continue to grow they’ll have to be removed at some point.  He says people live with partial livers and partial lungs all the time. Until then we will keep re-scanning them every 3 months. Seriously?  I am stuck.  I now know about all of these tumors and will have to learn how to once again go about daily life with uncertainty looming in the future. I am a person who likes concrete answers. This is not the kind of adventure I imagined for my life.

This is also very time consuming.  I already go to the dermatologist every 6 months, and the breast surgeon every 3.  I will now add three new specialists to follow up with and scans of my bones, liver, and lungs everything every 3 months???  I just don’t know how that is possible.  There has to be a solution to this that is responsible and yet will not consume our lives.

Pending the results of the liver MRI tonight (which is also looking at my lung again) and the Breast biopsy on Monday, I will just continue to wait. Continue to live life and not worry about these things.  Trusting God has been the theme of the last ten years of my life (and really isn’t that the case for all of us?).  Clearly God is teaching me about waiting, and the growth of my character. Trusting him with ALL things including scary medical things, cancer and death.  From the first day back in March when I got the results from the breast MRI, I have had a very supernatural peace.  (This is not like me). A friend reminded me the other day that it is the “peace that passes understanding.” I can’t describe it any other way.  This is beyond me and my control.  I can’t explain it other than lots of people are praying and I have peace.  I have moments of fear for sure, but mostly I have peace in my heart.

“And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” – Philippians 4:7

The stranger I cried with at Walmart today….

Today at Walmart, I was scanning my few items in the self checkout and noticed a young mama behind me trying to scan her stuff and hold a screaming baby. Her little guy looked to be about two years old and was doing his best to get out of her arms while kicking and screaming “Down” at the top of his little lungs.

In my heart I felt her despair and stopped scanning my own stuff, turned around and asked if I could scan her cart so she could hold her baby.  I noticed tears streaming down her face and rather than holding it together and being strong…I broke down and cried with her….for her…for me…not exactly sure why I couldn’t stop crying.  I just kept telling her the things I always wanted to hear:

1. Your child’s tantrum isn’t bothering anyone else. (Most of the other people around you are parents too and they all understand).

2. He is not as loud as you think he is. (When you are the mom whose kid is screaming, it seems like everyone in the whole store is annoyed with you).

3. It’s hard to go to the store with kids whether you have 1 or 5 with you.  (Not every single time, but I think every mom has at least one terrible experience).

4. It’s okay to cry about it in the middle of the store (this was also for my benefit as I was full on tears at this point also).

I also shared with her that this has happened to me many, many times and I really wished someone had helped me instead of the many other responses I have received over the years. Often our “kid meltdowns” are met with unsolicited advice, eye rolling, laughter, or comments usually pertaining to how I have too many kids. She seemed very thankful.  I am not sure if I freaked her out or really made her day, but I know I did what I was supposed to do.  I felt compelled to help her and instead of giving in to the little voice of fear in my own head, I chose to take a risk and perhaps be a blessing to someone.  I seriously went to my van and cried for 10 more minutes over the whole situation.  It solidified to me that I really want to be a mom who empowers other moms and doesn’t hold them back. If this is one little baby step toward ending a “mommy war” mentality that has crept into our culture, then I am happy to take it.

Handing Him Over

It’s April, and in between two of my kid’s birthdays it’s sort of a somber background noise of remembering one of the greatest losses our family has experienced. I have an interesting time in April every year taking time to remember our son we lost, while trying to celebrate our children whose birthdays happen at the same time who are very much alive.  We make sure to remember and talk about him and visit his grave. My mom always does a great job decorating it with beautiful “baby” flowers. It’s hard to believe he would have been 8 years old this year.  I wrote about the whole thing here last year, but today, for some reason, I have been thinking about the moment we had to hand our little Riley’s body over to the nurses when it was time for us to leave the hospital.

I had three miscarriages before I had Riley (two with D & C’s) and had definitely experienced the horrific feeling of loss when you know that when you wake up your baby will not be with you anymore and these are your last few minutes with your baby.  The whole idea is so uncomfortable for me.  Because miscarriage is so common, there is a lot of pressure to take it all in stride.  To not be too emotional.  I didn’t even know for a few years that two of my tiniest babies are buried in a mass grave that the hospital provides at the local cemetery. I believe it is written inside a thin pamphlet they give you when you leave.

On a side note, I think hospitals are just so unsure of how to handle the loss of  early miscarriages.  Many mothers are not interested in hearing the burial information.  Many are not sure what they are feeling at the time of loss.  Some are conflicted because the pain of knowing and really experiencing the grief may just be too much to handle.  So they just say nothing. It is quiet, it is pretty fast.  It is never hardly spoken of again. I believe many women suffer this type of loss in silence because they can’t wrap their brain around why they are grieving the loss of a child that they never held or knew.  They feel ridiculous for mourning when so many other women have suffered the same outcome.  I know I did.  Like with many other circumstances in life, we wrongly look around and compare how someone else dealt with it and we believe we should be like them.  We also belittle our suffering by comparing ourselves to people who lost a baby later and think “at least it wasn’t that bad” and the whole cycle of suffering in silence continues.  Sometimes sadly, you voice your pain to someone and they share how easy it was for them which only makes you feel worse.  I am so thankful that I was able to mourn those losses without too much shame. I knew from my family members and many friends that an early loss is still a loss and in the end I would heal better for really embracing it. I will say that I have known many other women who seem to genuinely not be as emotionally affected by their miscarriage, I don’t fault them. We are all so different in how we grieve.  Some people accept the idea of death in general more easily than others.  

When I got to my second trimester with Riley, delivered him early, and held him as he died, it was an oppressing feeling of grief.  I had grieved the previous losses, but this was so real.  Laying in my arms real.  In many ways more painful, and in many ways more wonderful because we really got to feel and process those hard emotions and no one expected anything different.

It was more wonderful because of his name.  He was a boy and we named him Riley Alexander!  I never named the other babies I lost real early.  We were never able to get the pathology testing on them due to lab errors both times.  I never even had a feeling if they were a boy or girl, so I didn’t name them.  I have a hard time with that and it’s been 10 years.  I didn’t know how to name them, and it feels strange to do it now especially since there are so many.  His birth was also wonderful because of what he looked like.  It is a miracle to see a baby who is 15 weeks old and looks so perfect.  Seeing his tiny fingers and toes and his adorable nose!  I was in awe and I was in love with him.  He was so TINY.  I wish I would’ve had a good digital phone camera 8 years ago, the few we took with our blackberries were so dark and the one the hospital took was so formal looking with him lying on a white satin pillow with a blue bow that practically screamed death. I don’t ever want to show that to anyone.  I want to remember him wrapped up in the pink and blue striped hospital baby blanket that all my other kids were wrapped up in at their birth.  While I was admitted on the maternity floor, I just didn’t have a camera with me at the time to get good pictures.  If I had those pictures, you better believe I would share them.  I was only in my second trimester and yet he was a very real baby.

We spent the whole day holding him.   They hung a special bear on our door alerting the incoming nurses that our baby hadn’t lived.  We were allowed to leave after about 12 hours, but I did not want to leave him at all.  How could I walk away and leave him there?  With the other babies, I was asleep, I obviously didn’t get to see them and I was very ready to leave. But with Riley, I wanted to remember everything about him, what he looked like, what he smelled like and never forget anything .  I got to raise my other children and this was the only day we had with Riley. But, we had to leave.  It was in fact, our 7 year old daughter’s birthday that day and we needed to get back to her since we were now able to.  We weren’t allowed to stay any longer anyway.  Walking away leaving him laying in the bassinet was nearly impossible. Driving home in silence, with tears that wouldn’t stop was awful.  But, I would do it all over again since I had at least one day with him.  It was unbelievably hard, but his life was validated.  Not by a real birth certificate, even though he was born alive, but in my heart, with our own eyes.

We buried him later that week in his own grave. That was an entirely different difficult experience.   We had to hand him over again.  Forever.  I will never forget the smell of the dirt that rainy spring day.  When I smell dirt, it is immediately what I think about.  Not in a “bring me to tears immediately way” like it did at first, but in a “remembering” way.  It felt so cold and wrong to leave him there alone.  (And that is because it is wrong.  Death is wrong.  It is not what God desired for us to experience when he created us.  It is exactly why we just celebrated Easter!  Thankfully Jesus died for us and conquered death for us all so that we can live forever together again some day in Heaven – Praise Him!)

I hope women will read my story and the many others shared online, and their grief will feel validated.  I hope they will not continue to suffer in silence. I hope they will name their babies, and mourn their babies so that they can freely remember them without shame. I hope women will read my story and reconsider when a life begins, and how easily we believe the lie that this tiny human is not his own entity.  I know stories like mine have existed for years.  I have several women in my life who have shared their awful experiences with me.  I hope that the accessibility of the internet will allow everyone to hear those stories and not wait until you are in this secret sad sorority of mothers who have buried their babies.

my new goals for my blog 2015

Okay, I know New Year’s Resolutions are a little past tense, It is March so that is to be expected.   However, I have made a few and still not “started” them…oops.   One is to mail my Christmas cards.  They are unaddressed in my office still and I am not finding the motivation.  Secondly, it was to write more on my blog.  January marked ONE whole year I have been writing here.  It has been so good for me to use writing to process some of the changes and life experiences I have had.  As I quickly was realizing that I am running out of things to write, I started brainstorming.  Quite frankly, I started my blog with no vision for what I wanted it to be about.  Just as a way to journal mostly.  Lately, I’ve been considering what else I can write about. I have decided that I will branch out and write about more of a variety.  I guess it’s still a typical mom-blog.   It is a little out of my comfort zone to write my opinions or post about my crafty ideas, food, or money saving tips for large families.

I am most excited to write a little more from the heart.  My favorite people are REAL people and I generally wear my thoughts and feelings on my sleeve.  So, why not share them here.  I want to write about parenting, being a mom, being a woman, having a large family, etc.  I want to share about my struggles and not just my successes.  I want my writing ultimately to liberate any woman or mother that feels like she is not good enough. Who feels like she doesn’t measure up.  I struggle with that on a daily basis and it is just crippling and NOT true.

I have enjoyed running into people or getting Facebook messages from people who tell me that my writing has impacted you in some way.  I started this blog because I felt like God wanted me to share my story and I am hoping it will continue to be a place where I do that. I love reading other blogs that are about everyday life and I learn so much from other families.  It blesses me to get to do the same.

Most of all thanks for reading!  It has been surprising to me that so many people would like what I have to say and take time to read it, pin it and even share it on Facebook so many times. It is so humbling. I have mostly loved hearing from readers about their stories and how they could relate. That is why I want to write. I love hearing how other people have been on a similar journey, it makes me feel like I’m “normal.” I hope others will feel that way from hearing my stories too!

Advocating

I have spent several days of this past school year advocating for my children. Learning situations, behavior situations, absences over the limit. I am pretty exhausted. These are fairly normal for most parents, and I expected these times. I have also spent countless hours on the phone with our insurance company to resolve a denied claim and loss of coverage for my son’s medication. It has taken SEVEN months friends, and several people helping to get this medication reinstated. Thanks to a wonderful Nurse Care Manager and so much phone time.  Quite honestly I am still in unbelief until his iv is placed and the medication is being infused.

I have decided to become a Washington Healthcare reform lobbyist…(very much kidding) but seriously something needs to change in our system. Some “paperwork” error was the initial hold up last January in denying the first infusion of the year, which led to the home health agency stopping treatment until the (large) bill was paid. Then we appealed and got denied FOUR times. Meanwhile, my son who has an unspecified genetic immune deficiency (which is fancy for “they don’t know exactly what it is”), got sick, was hospitalized with a resistant ear infection that required IV antibiotics, & emergency IVIG which then caused aseptic meningitis, then he developed an acute bacterial sinus infection that required SIX weeks of strong oral antibiotics, two CT scans and a surgery. He has also had many tummy bugs, and tonsillitis He hasn’t felt well in months. Can you imagine sending your kid to school like this as much as possible? He has missed a ridiculous number of school days requiring a chronic health waiver to be filed. All of this because of a paperwork glitch last January. If he has his medication, that doctors have determined he needs, he is usually very healthy.  Finally, after months of following the protocol,  my husband’s company HR rep made a decision to override the insurance decision and pay for it. Now we will wait and see if they do the same for each month going forward.

Honestly it is a long shot. The odds are not looking great. The treatment is expensive. He needs an official diagnosis that will show WHY this IG therapy helps him. We just know it does. There are treatments in Europe that are not available in the US that we could try in a clinical trial. Having a child with a rare disease is so heavy and heartbreaking. Add in the educational set backs…I am constantly wondering if I am making the right decisions for him, or helping him enough. We recently completed genetic exome testing, and he was referred to the NIH. The NIH (National Institutes of Health….government medical research facility in Washington DC  – it is a big deal in the world of rare diseases). It is so much to digest. I went home numb. I never anticipated making these kinds of decisions as a parent. Life changing decisions….like if we get the results of the genetic testing that will help his doctors treat him, we ruin his chances of getting life insurance in the future??? The counselor reminded us that his odds are already slim. It was a new grieving.

My heart just exists on the outside of my body for him (Is that a thing?). I look at him and wonder how his life will be, will it be filled with insurance battles, sickness and complications? Or will he be able to live a normal life that includes a few glitches along the way? I am thankful for every day with him. But when I watch people in my support group lose their little kids to a virus like the flu, I am jolted into reality. As he gets older he is asking more questions about why he is sick, if he will die, etc…(some have been prompted by his well-meaning brothers). It had never occurred to me that this process would get harder with an older child. When he was a baby and toddler he was so brave….but now he is starting to understand the seriousness an he is scared. I don’t blame him for being afraid, but I want to just take it away.

I write this not for sympathy, just at the slim chance that another (rare disease) parent will read it and know they are not alone. I have at many times felt like no one understands. I have found great support in online groups (highly recommend). I was so excited to see Glennon Doyle Melton at Momastery’s Facebook Page write a post about medically fragile children and so many signed their names in brokenness wanting to be seen. It moved me to tears. I know that is what we all want for the battles we are fighting. Battles we didn’t choose, but that chose us. I’ve spent the past 5 years accepting and working my way through these waters. I’m fighting for joy and faith that God’s plan in my son’s life is absolutely no mistake.

I also write to remind us all that we can keep advocating for the very best for our kids. Sometimes it takes a lot of work, and sometimes it’s as easy as a phone call. They deserve our very best work. Some kids require several hours a week of our advocating and some only require a few minutes. Keep on doing it. It is making a difference.

love you all, and thanks for reading even when posts are several months apart….yikes.

*** This post was written a couple months ago and I apparently never published it.My blog skills are lacking.