I do but I don't, I will but I won't

We had an amazing trip to the beach!!  Michael and Abby (due to the generosity of some very kind people) got to take surf lessons while we were down there.  The salt air is so good for them because it replaces some of the salt they are lacking.  In fact, one of the medicines they are on was discovered by surfers in Australia.  It is a 7% salt solution called hypertonic saline and being at the beach is just like getting a treatment of it.  One of Michael's dreams was to learn how to surf so it was wonderful to see it come true.  I can't even explain how I felt seeing him on that surfboard.  I admit it, I cried.  When we were done with surfing at Wrightsville Beach, we went back to my parent's home at a different beach and were just in time to see some baby loggerhead turtles being born!  It was moving to see them start out on their journey.  While we were standing there watching them be swept into the ocean, Michael took my hand, looked up at me and said "This is a day in my life I won't ever forget."  I'm sure I won't EVER forget it either.  When you are living day to day and moment by moment, it means so much to be able to give your children a memorable day.

I can't even describe how difficult this journey has been for us.  I personally struggle a great deal with Michael's prognosis.  This is the most contradictory set of emotions I have ever had.  I want to move forward to know what is going to happen and yet I want time to stand still.  I want to know how much time we have and yet I don't want to know. I know in my heart that I should just enjoy the time we have with him but I have this endless loop of questions and "what ifs" that run through my mind.  I am strong one day and overwhelmed, paralyzed with fear the next. It feels like we are just spinning our wheels and it is maddening.  I want to move forward and I don't because moving forward means transplant.  It means putting Michael through a huge, risky procedure.  It means trading this life for a completely new one.  It means not knowing what is on the other side.  It means no cure will help him.  It means a long, drawn out hospital stay away from home.  It means a risk of lymphoma.  It means switching to hospice and changing his full code status to a DNR if lungs don't come in time.  It means losing my child and I can't face that. Yet it's something I face every day.  Most parents don't question it to hear their child talk about what they want to be when they grow up because they just assume that their child WILL grow up.  Michael talks about what he wants to be when he grows up and I don't care what he wants to be, I just want him to have the opportunity TO grow up.  Some days I feel strong and some days I don't.  Maybe tomorrow I will feel stronger and maybe I won't.

Hurry up and wait...

Michael continues to do well.  He has been running intermittent fevers lately but they seem to go away on their own.  I am finding this the hardest time for me.  After his prognosis, there was always something to get done, something to get through and now all I have to do is think and think and then think some more.  After the doctors told us two years was what he has left, we went to Pittsburgh for the transplant evaluation and I was busy planning that, then he was in and out of the hospital, then we went back to Pittsburgh for a follow up, then he was in the hospital again.  I didn't have time to sit and process this all.  It has hit me like a ton of bricks lately and I am finding myself unable to sleep some nights because my mind won't shut off.  There are so many scenarios and I try to picture them all so I feel somewhat prepared but the many variables make it hard.  Sometimes I feel paralyzed with fear because I don't know what is going to happen with Michael.  It's like being told you are going on a trip.  You pack your bags, head to the airport, and are told your flight has been delayed AND rerouted.  So now you have no idea where you are going, when you are leaving,  and what time you will get there.  The only thing you know for sure is that you are going on a trip.  You have no idea what the journey will be like.  You have no idea what your destination will be like.  You don't know if you will be happy in the place you end up.  Will this trip be the best decision you ever made or the biggest regret? 

We did it!!

I am happy to report, we have reached so many milestones this past few months.  Michael turned 8 in May and I was so happy to see it!   When he was so sick with his liver and his heart, I was scared he wouldn't make it to 8 but here we are!  The only thing he wanted for his birthday was a green butterfly net.  Simple, right?  I looked ALL over town for months for one and finally found one at Toys R Us.  They had JUST gotten a shipment in and only had one green one left by the time I got there.  His face lit up when he unwrapped it and that moment will stay with me always.  I'm so glad I could make him so happy! 
Michael just got home from a 3 week admission.  It was a planned admit but the day he was to be admitted, his sats dropped, his heart rate increased. he needed his oxygen and he spiked a fever.  It turned out to be viral but I'm glad he was going to be admitted anyway.  It always scares me when he gets that sick that fast.  The admission went well..  They switched his tube feed formula from one that has 1.5 calories per ounce to one that has 2 calories per ounce and he put on 4 pounds.  I weighed him when he came home so I could get a baseline on our scale and he weighed 49.4 pounds. It has been my goal for the past year and a half to get him to 50 pounds (those of you with CF kids know how difficult this can be).  I even made a deal with him:  If he started eating well and doing his tube feeds (he sometimes unhooks himself so he can play), once he passed the 50 pound mark, I would pay him $15.  Well, I weighed him tonight before bed and he now weighs 51 pounds!!  I am going to (gladly) pay him his $15 tomorrow or we may just go to Walmart and buy him the Beyblade thing he's been wanting.  Abby is currently in the hospital for a tune up and we are hoping to get her out on the third of July even though her 21 days aren't up until the fourth.  They are not going to gain or lose anything with 24 hours so we are fighting to get her home on the third so she can be with us to celebrate on the fourth.  That's all there is to report.  Things are going well here.  I hope and pray that they stay that way!

Leap of faith

As many of you know, we went to Pittsburgh to have Michael evaluated for a double lung transplant. It was a lot of information and emotions to process. I feel I am now ready to give the details of the evaluation so here goes; First and foremost, the doctors at Pittsburgh do not feel that Michael is sick enough to need a transplant right now but they do agree with our doctors here that it won't be long. The thing that stuck out in my mind with that information is that we will have to watch him get sicker before we can do anything for him and as a mother, that thought breaks my heart. I am glad that we have the option of a transplant but I do not want to watch my child get sicker and struggle even more. There were so many things that we (or maybe just me) were naive about. I knew that transplant is a HUGE risk and is by no means a cure but I had no idea how many pros and cons we would have to weigh. Here are some interesting things we learned: If Michael gets a transplant and a cure for CF comes later, it won't do him any good. Basically, once lungs are transplanted, they will start to degrade at some point. It's just not knowing when. Lungs are complicated because they have access to the outside world. So once he goes through the transplant we have essentially started a ticking time bomb and won't know when it will go off. That is why we are not listing him now. The longer a person can go with the lungs they were born with, the better. His chances are 50/50 seven years post transplant. We know he has a 0% chance if we do nothing so that 50% is looking pretty good. Also, we found out that there is a 10% chance that he could develop Lymphoma due to the T cells being supressed for transplant. That is a type of cancer that responds well to chemo but I had no idea that was a risk. We also asked the best case/worst case scenario question and were told that the best case scenario is that he does well and lives another 10-20 years. The worst case scenario is that he goes into instant rejection and doesn't make it out of the hospital. The good news is there is nothing stopping him from getting a transplant. He doesn't have B. Cepacia or any other bacterias that will keep a transplant from happening, his heart tests came back looking good and all the other test results were well within what would be normal for a person needing transplant. We also found out that Michael would be in-patient for about 2 weeks post transplant (assuming all goes well) and we would have to stay in Pittsburgh for 4 weeks following that so he can be followed closely and checked for rejection. At the 6 week mark, they would take a tissue sample from the new lungs via bronchoscopy and check for rejection. If there are no problems, we could then bring him home. They would follow up with taking tissue samples at 6 months, 9 months, 12 months, 18 months and 24 months post transplant. Pittsburgh did give us a few recommendations of things we could change around for Michael and he seems to be responding well to the changes. He is holding steady with Pfts around 40%, he is no longer receiving TPN due to the damage it was causing his liver and the risk of sepsis from having an open line but we are now having to do tube feeds around the clock. Michael is tethered to a pole for 20 hours a day so he can get his daily recommended 3000 calories. He does eat but there is just no way he can consume enough calories for him to gain weight when his body is burning them working so hard just to breathe. When we got home, Mike and I had a discussion about whether we wanted to go forward with transplant when the need arises and luckily, we both agreed that we want to pursue it. We both feel that we need to give Michael every possible chance. I'm so glad that we were in agreement. It made things at least a little easier. I think the scariest part is not knowing what is going to happen. Obviously, no one can see into the future and tell us exactly what Michael's outcome is going to be but sometimes you just have to take a leap of faith and believe that things will work out as they are meant to be.

Special needs, Special Moms

I will post about Michael's transplant evaluation as soon as I can put my thoughts and emotions into words. It was a hard 3 days and I am just not quite ready to talk about it as I am still processing all the information we received. So for now, here is an observation I made while in Pittsburgh that made me proud to hold the title "Mom".


WOW. I learned so much in Pittsburgh at the Children's hospital. I saw so many children in so many different levels of disability/special needs and I was in awe. It amazes me that God has made so many special children but that is not what I was in awe of. I was in awe of all those mothers tending to their disabled/special needs children and not thinking a thing about it. Whether it was a mother pushing her bald daughter's IV pole that held chemo drugs, a mom carrying a little girl with leg braces, cotton candy pink glasses, pig tails and the brightest smile on her face or the mom who was pushing her son in a wheelchair. It made me realize that we, as mothers, are some pretty resilient people. We expect, hope, pray, and assume we will have a healthy, "normal" child when we are pregnant but life doesn't always work out that way. We pick ourselves up, dust ourselves off, and carry on with the new life we have been handed. I am not putting dads down, I am only speaking to motherhood because that is all I can personally attest to. I think every child has "special needs" whether it be extra help learning something new or just someone to love them. I don't really agree with the term special needs. I don't think my childrens needs are any more special than your childrens but I do know one thing, children with needs require special mothers! So if you are a mother (in any form) give yourself a pat on the back and know that you are doing a good job even if it's just doing the best you can at that moment. In closing, I will leave you with a verse that has hit home with me these past few days..."Even youths grow tired and weary...but those who hope in the Lord will renew their strength." Isaiah 40:30-31

A letter to my son

Dearest Michael,

When I met you for the first time, I thought about all the things I would teach you. Never did I imagine that I would be the student, and you, the teacher. You've taught me that true strength is so much more than stamina. You have every right to feel sorry for yourself, and yet you never take the opportunity to do so. You have days where you are coughing until you are blue and vomitting and you want to know how my day is going. You were sitting in a hospital bed worried about the tornado victims and felt compelled to raise money to help them. You said "I just want the world to be a better place and I want people to have a happy life." You constantly amaze me with your loving disposition, passionate spirit and gentle soul. That soul that has always been stronger than your body. You have wisdom way beyond your 7 years. There is not a day that goes by that you don't make me laugh, smile and sometimes cry with your sweet words. The day you told me that you love me all the way to God and back is still one of the days I cherish the most. Those beautiful words still echo in my heart. I have so many hopes and dreams for you. I hope that you can get new lungs, that you get to fall in love, that you get to experience the joy of having children of your own some day, I hope that you are happy but most of all, I hope that you always know how much you are loved. It is an honor and a privilege to have you call me Mommy. Thank you for all you have taught me about the world, life, love,being gracious, and giving of yourself.

Love Always,
Your Mom

P.S. I love you all the way to God and back too.

Thankful

I am doing the Facebook thing and posting what I am thankful for every day in November. It is SO hard. Not because I am not thankful for anything. The truth is, I am thankful for EVERYTHING. I spend most of my day being thankful. About a month ago, we were told that Michael's disease is progressing faster than they thought, the bacteria in his lungs is slowly taking over and it isn't resistant to anything anymore. Meaning, the only thing that is going to save him is a double lung transplant and we need to think about doing it NOW. His life expectancy has gone from 4-5 years to 2. As you can imagine, we were devastated. Why am I putting this all in a blog about being thankful? When you hear those words, "You're child has 2 years to live," all of a sudden, life is put into perspective and trivial things don't matter so much anymore. So, I am thankful for EVERY LITTLE THING. I am thankful that we have the hope of a transplant, the advancements in medical technology that may save his life, good insurance, and the fact that we are moving forward towards a cure. But what am I most thankful for? Cystic Fibrosis. Yes, you read that right. I am thankful for Cystic Fibrosis. If my kids didn't have it, I might take things for granted. I might not take EVERY opportunity to show them how much they are loved, I might get a little more angry when they make mistakes, I might not be as patient with them, I might not think about how much time I have with them, I may not ever realize how truly blessed I am. My children have taught me how fragile life really is and how important it is to live in the moment and love without reserve. For that, I am beyond thankful.