Friday, October 8, 2010

Lead By Example

This week, I'm really trying to focus on being open to change, and accepting circumstances I can't do anything about.  That being said, I also know that I can pray about things, but that God also gave me an able, capable body, and putting effort, hard work, and prayerful thought into action for causes that are on my heart, could lead to great things that can help a lot of people. 

I am so thankful that Wyatt has been accepted into this study at Stanford.  Next week, he and his Daddy will fly over to meet with the specialists, finish the formal paperwork, and we will begin this journey of learning how to manage blood sugars with the help of a continuous glucose monitor.  The constant support and feedback with the doctors and nurse practitioners will be a huge blessing and we are excited to learn new ways with new technology to help our son.

Since mentioning Wyatt's involvement with the study and letting people know about the expenses to get him back and forth to California, there has been an overwhelming outpouring of love, support and prayers.  We are doing everything we can to earn extra money for these expenses, but one of my friends told me, "Sometimes it takes a village to raise a child."  I wish this was a one time fix, but this is a long term care issue and while we are adjusting and making changes as fast as we can to accommodate this new path we've been given, Wyatt's organs don't have that gift of time. 

God bless our family for helping with the initial expenses of getting Wyatt and Jon over to Stanford.  We will have 6 weeks until the next two visits and continue to work toward getting help to get him over there throughout the year.  We are just putting our trust in the love and the hearts of others who want to help our son. 

We are also working to start a non-profit organization for families in this situation, as we've found quite a gap.  There are many hard working families, that have long term medical issues that slowly destroy their family.  We are trying to share how, although it tears at your heart and is stressful every hour of every day managing your child's care with Type 1 Diabetes, it doesn't have to tear your marriage and your family apart.  You have to cling even closer to each other during these times, and keep God at the center of your marriage.  When things get hard, remember to pull out those vows and read what you really signed up for in that sacred bond of marriage.  In sickness and in health, for better or worse, for rich or for poor....All of those aspects of marriage aren't always fun, but they can actually bring your family closer together, if you have the courage and strength to stay together. 

I am thankful every day for my precious children, and the love and support of my family and friends.  When my heart is broken and heavy with responsibilities and worry, you are a constant source of encouragement and joy to me.  God loves us and is carrying us through the hard times, not abandoning us.  I know this is true, and it encourages my efforts to work to "thrive, not just survive" with this autoimmune disease that has mysteriously affected my son, and has changed our lives as a family.

Remember as you are giving to others and taking care of them, to take time for yourself too.  I am guilty of not doing that enough, but understand and recognize the need for it.  Leading by example, I'm off to play dress up for a Halloween Costume game of BUNCO with some of my friends, while my hubby and I trade off with our kiddos. 

Keep up the good fight!  If we give up, we'll never get to see the finish line!  I'm praying for whatever is on your heart and know that God is guiding all of our decisions.

Wednesday, October 6, 2010

First Day of The Rest of Our Lives

Have you ever had a problem that you can't fix?  No matter how smart you are, how hard you try, or how much you pray, there's just nothing you can do to change the situation and make it whole again?  You drive yourself crazy trying to find an answer to "why?"  Then, you finally come to a point of acceptance and realize, some things just happen in life.  Sometimes, no matter how hard we pray, the answer is just a quiet, "no."  I'm still working through that, but really trying to "thrive, not just survive" with this life I've been given.

Since my son was diagnosed with Type 1 Diabetes two years ago next month, my family has been living in this haze of existence that honestly, has resulted in a pretty depressing outlook on life.  By trying to live like nothing had changed and just "dealing" every day with the struggle of managing meals,  having him cry and fight us at every blood sugar check and insulin shot, and trying to live like it's no big deal; life effectively left us completely physically, emotionally, and financially drained.  It's really difficult to live surrounded by people that just do not understand what you're going through.  Especially, when you and your spouse are two of the leaders in your family who are use to taking care of everyone else with their physical, mental, emotional, and financial issues.  We don't want to be in a position of not having all the answers or having to depend on help from others, especially as first kids ourselves, it's just so out of character and has left us really out of sorts.

Our six year old son, Wyatt, is the vision of health.  He is a beautiful, intelligent boy with the best sense of humor.  I can't explain it, but everywhere he goes, people are drawn to him because he is so articulate and just has a way about him that makes people smile.  It kills me, as his mother, to see him struggle every day, and not be able to just eat, go to school, and play like a normal child.  We are constantly juggling his blood sugar levels and every number outside the good range, means his organs are being damaged.  An awesome doctor at a family camp for Type 1 Diabetics recently shared with us, "If their numbers were good all the time, they wouldn't have diabetes."  That makes total sense.  It is unrealistic to play the role of a perfect artificial pancreas all the time.  No matter how hard I try, I will never be a perfect external pancreas for my son.  That just drives my little "perfectionist" self crazy!  Please, Lord, help me to accept this and still strive to be able to do the best I can with what I've got, for my son!
Presently, we are working toward being able to get him an insulin pump and a continuous glucose monitor.  He had a severe low this summer that caused him to go into a paralyzing seizure for 6 hours, and it rocked our confidence of caring for him, and has us questioning everything we are doing. 

Please pray that we will have some answers to our prayers and some guidance for this road ahead.  We are a strong, hard working couple that loves our children and would do anything for him.  Right now, we are trying to sell our house and have sold almost everything we have to provide for our son's medical expenses.  I know there are people in this world that want to sponsor children and help worthy causes, and my son is one of them.  I know that every day we can't keep his numbers in a normal range, means he has less of a chance at a full and healthy life.  If having to get a costly insulin pump for him, having him in research studies to find a cure, and getting better medical care will help do that for him, we will gladly lay down everything we have to make that happen.

My heart goes out to any families in this situation and to all of you who are trying to find ways to "thrive, not just survive" in your current situation.  Weather it's a health issue, financial issue, or emotional, or physical burden you are struggling with, you are in my prayers and on my heart.  I'm not giving up believing that there is a bigger plan that will make best use of our skills and talents, and that although we can't see it right now, our struggles are going to help others not lose hope or give up faith.

Every day with my son is a miracle and I am so thankful for organizations like the Diabetic Youth Foundation and the Juvenile Diabetes Research Foundation.  If it's on your heart to contribute to organizations that help children who are dealing with this daily struggle find ways to live NOW and also strive to find a cure, these are very worthy causes.  I have found a hole in the system though, for children like our son, whose family works hard, but just cannot afford the additional medical expenses.  I'm trying to research starting a foundation to help meet these needs, but need help connecting with some others who would like to make a difference in the lives of families like ours.

I'm not sure about you, but I'm going to go make my list of 10 things that bring me pure joy tonight.  I'm not sure if I can come up with 100, because it's late and I'm tired from working so much, but I will cross off 3 by kissing my two munchkins and my hubby goodnight.  You keep your chin up out there and don't give up.  There is more to this life than just surviving it!  :)  This is officially the First Day of the Rest of Our Lives, and I'm not going to waste it!