I'm Back

It's been almost 9 years since my last blog post.  I am still here and I am still Catholic. 

On October 15, 2016,  we came home from my youngest son's last high school football game and thought we had been robbed. Chris said he had to stay home to work on my car, the better of the two cars we had at the time. He lied. He had friends come over to move furniture out.

At the time, I thought my life was over. After 24 years of marriage and being a devout Catholic, I wasn't sure what the future held for me. As silly as it sounds, I kept saying to myself, "You can't be Catholic and divorced."  I took my faith and my vows seriously.  Once he filed for divorce, I petitioned for an annulment and it was granted.

It was a long, hard road to get back on my feet, but I am happy to say that my life was just beginning.  I just didn't know it. I stopped crafting and writing- too busy with work. I was purely in survival mode. Looking back, I am not quite sure how I made it. God's grace and mercy are the only explanation. 

I focused on healing and remembering who it is that God says I am. The legal battle went on for almost two years. I went to therapy regularly, joined divorce care and started doing all sorts of outside activities--cycling, kayaking, camping and hiking. After the annulment was granted I started dating again. Boy do I wish I had blooded through that period. I met some crazies. 

Five years ago February 8th, I met Marty. I can honestly say that I never knew what it felt like to to be loved until he came into my life. I tell a little about how I met Marty on this post on my adventure blog here.  I had big dreams about writing these fantastic posts about all the places we adventured. Sadly, I work too much and between that and adventuring never find time to write. 

Why an adventure blog? My Catholic faith has never left me-- it is who I am. I think for the last 8 1/2 years I have been struggling to find my balance again. Marty and I did get married in the Church.  I think until recently, I have been stuck on being a divorced Catholic, though the annulment means Marty is my first marriage because the first was not a sacramental marriage.  I wrote this the other day: Ramblings of a Newlywed Mother on my adventure blog.  

Night before last, I was going through some old videos and realized this blog still existed, so I am going to try. to keep My Little Red Bike for Adventures and this for more faith related things and daily ramblings. I also still have my political blog, Catholic Tea Party Hippie. -- I haven't blogged a lot of the latter. It has been many years. 

I think I'm ready to start writing again.....

It is Finished

It's Good Friday and this is what I did in my journaling Bible today:

Faith to Not be Healed

A friend (in real life) and fellow rare disease mom wrote a blog post yesterday titled "Faith to Not be Healed". You can read her blog entry here. It was such a timely blog post about her reaction to a clip she'd heard and her daughter's recent diagnosis. This week, I have been asking God why He has chosen to allow our family to deal with three rare diseases (Shwachman-Diamond Syndrome, Mitochondrial Disease and Eosinophilic Esophagitis) and asked Him why He would give my boys these diseases and also allow some of the treatments not to work for them.  We found out Monday that my son's scope looks to be unchanged from his previous two. Meaning the new medication he started back in December isn't working.

So, reading Kathy's post really hit home today. Do we have the faith to not be healed? We know that God doesn't heal everyone. Even when Jesus walked this earth, He did not heal everyone, so why would we expect everyone to be healed now?  So often over the years, people have said to us, "If you have faith, they will be healed," and we even had one lady say, "You don't need to bring them to the doctor, it is God's will that they be healed." It's amazing what people say.

How do we react when it just isn't God's will that we or our children are healed? I believe God uses healing just as much as He uses suffering in the absence of His healing. Do we see God suffering? This week being Holy Week, I have been meditating on the Lord's Passion. A lot.

We've been dealing with rare, chronic illnesses for almost twenty years. While we pray for healing daily, we are confronted with reality when tests reveal that healing hasn't taken place. Or has it?  I think healing comes in many forms. Maybe God has chosen to heal us spiritually instead of healing our children (or us) physically. I think over the course of twenty years, God HAS healed us spiritually. His grace gets us through the rough times and the crazy illnesses that pop up due to the rare diseases my children battle daily. God uses our suffering to encourage others. Paul says the following:

2 Cor 1:5-7- "For as Christ's sufferings overflow to us, so through Christ does our encouragement also overflow. If we are afflicted, it is for your encouragement and salvation; if we are encouraged, it is for your encouragement, which enables you to endure the same sufferings that we suffer. Our hope for you is firm, for we know that as you share in the sufferings, you also share in the encouragement."

Sometimes, I can easily accept God's will. Other times, I am tired, cranky and fight acceptance. I'm human! Prayer helps, but I can't say that I always accept His will, if I am being honest with myself.  I understand redemptive suffering and scripture is replete with examples of suffering with Christ and accepting our sufferings patiently.  1 Peter 4:13 reminds us, "But rejoice to the extent that you share in the sufferings of Christ; so that when his glory is revealed you may also rejoice exultantly."

It's just not always easy to rejoice in our sufferings, is it?  My middle son was hospitalized the week before Christmas last year because his uvula was nicked during a routine upper GI scope and it became infected. Who has ever heard of an infected uvula? I'm here to tell you that it happens. It was difficult to say, "Wow, Jesus, I'm sure glad you allowed this odd infection to set in after we've already spent the week at the hospital, I'm going to rejoice in this." It doesn't come naturally for anyone. Many a saint has worked a lifetime to gain acceptance of his suffering. While I hope to one day be counted among the saints in heaven, I've got a long way to go.

God also gives us the grace to laugh at some of these odd trials we manage to overcome with His help. In my opinion, laughter IS grace.

Name the appendage and my people have had an infection on it. I could do a stand up comedy routine just on the unusual and rare infections. If I had a penny for every time I'd heard, "We've never seen anything like this."  Sometimes, people who haven't faced the medical trials that we have faced look in horror because we are laughing.  We can laugh or cry. We choose to laugh. With the help of God's grace, of course. Sometimes we can't even begin to laugh until we cried.

It's Holy Thursday and I'm doing what I've done many a Holy Week in the past.....waiting on the final biopsy reports and test results. Slowly, we are accepting that the scope on Monday doesn't look any better than the previous scopes in December and October. It's difficult to accept that medications don't  knock the disease out. The biopsy results will tells us if the medications are working AT ALL.  We pray for healing, we pray for a cure and we keep working at accepting God's will in all of this. We pray for the grace to patiently accept the suffering we encountered for the grace to be able to unite our sufferings to His.

Tomorrow is Good Friday and I am always reminded that every Good Friday brings an Easter Sunday, a  Resurrection Sunday. This week, as I have pondered Christ's passion, I've also been reminded of what Paul says in 1 Colossians 1:24, "Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in the afflictions of Christ on behalf of His body, which is the church."

Somewhere in all of this, we find the faith to not be healed. God is good.

Life Along SDS Highway 101 with Frequent Vacations in Egypt

I just got a new computer and found this in my files!

Life Along SDS Highway 101 with Frequent Vacations in Egypt

   Finding support from those who travel the same road

We’ve been on a journey along what I like to call “SDS Highway 101” for almost twelve years now.  I have two boys who have Shwachman-Diamond Syndrome (SDS) and I can tell you that nothing can ever prepare a parent to hear that their child has a life-threatening, potentially fatal illness.   Finding support along the way has been a valuable tool in helping our family cope with the twists and turns of life along SDS Highway 101.

had neurosurgery (they cut the base of his spinal cord) and in December 2006, we learned that there was a possibility that Joseph may need a bone marrow transplant.   We later found out that he did not have a match in the National Marrow Donor Program Registry and were devastated.  Both of my boys are about to have their fourth bone marrow biopsy in just over a year  because they have had abnormal findings of del 20q and del 7q.   The SDS Highway 101 has many exits along the way.  Sometimes we are able to choose where we get off and other times we are forced off the highway.    While we often experience traffic jams and construction,  we also experience driving smoothly along the scenic portion of the highway from time to time, too.   Of course, there are bumps in the road, dangerous curves, and narrow sections along the way.  We’ve even experienced breakdowns.   The families we have met through the SDS support group have helped us tremendously.  They have been our tow-trucks and snow plows during some pretty scary times (breakdowns and snow storms!).   It helps knowing we are not on this journey alone.   

Sean and Joseph were both diagnosed at the age of two.  Their journey to diagnosis was a long one, one where we did not have experienced families to talk to.  Not long after Sean was diagnosed in 1998, a friend and I started an SDS email list on what was then called One List (now Yahoo Groups).   This daily contact with other SDS families became a life saver for me.    These families helped us through many a road block and trial.  Over the years, I have been blessed to meet these parents at various conferences, camps and in Cincinnati where my boys are seen at the Bone Marrow Failure Clinic at CCHMC.  It has been wonderful being able to meet and connect with these families – especially when we are at the hospital in Cincinnati.  It has helped my two boys cope with their hospital visits and the long trip to Cincinnati.   One time, Joseph forgot he was going to CCHMC to have a bone marrow biopsy done!  He thought we were going up there just to visit his SDS friends.   

One of the coping mechanisms I have adopted over the years, is to take virtual vacations to Egypt.   It started off because I would tell people I was in denial about the boys having SDS and would tell them that I was, “Cleopatra, Queen of Denial.”     I would talk about floating down Denial River and how I was so far up Denial River that I could see up Marc Antony’s skirt.    One day, another SDS mom mentioned vacationing in Egypt and sitting on top of the Great Pyramid and so it began…..our entire support group began taking regular virtual vacations to Egypt.   I am the one who always brings the umbrellas for our virtual adult beverages as we float along the river.  I like the brightly colored paper umbrellas, they are important to me.  

As you can see, life along SDS Highway 101 can even have its entertaining moments.   I have leaned on these friends a lot in the past year and a half.  In October of 2006, Joseph These curves in the road have been scary, but I am not alone.  I have faith that God is always with me, but I also have the wonderful friends I have met along SDS Highway 101.  I do not know what I would have done without the support of these wonderful friends.   

Life is a highway.  It has been a blessing to have people with me who have already been to the exits I am approaching.  As we face the possibility of transplant, the families who have experienced transplant have reached out and shared their experiences with me.   I cannot thank them enough for their love, encouragement and support.  I hope that I have been able to help other families through the sharing of my experiences, too.

You are not weak because you reach out for support from others.  We all have the need to be understood.  If you are battling a chronic illness, find others who are on the same highway.  Sharing your experiences can make you a stronger person and better able to deal with your child’s illness (or your own).  If you have a family member with Shwachman-Diamond Syndrome, I encourage you to find support.  Those of us with SDS children travel down the same SDS Highway 101 and through the Shwachman Syndrome Friends and Family list, we have helped one another cope with the twists and turns of SDS Highway 101.