Friday, December 20, 2013

The Christmas gifts I never knew I wanted

Three years ago my twins arrived completely unexpectedly nine weeks before their due date just three days before Christmas. I was under general anesthesia when they were born by C section and they were whisked away to the NICU to get breathing support.

When I posted that they were born the next morning, I got a lot of messages and comments about what a wonderful Christmas present I had received. The comment struck me as strange. Max and Addie were extremely wanted and so definitely they were a desired present. Having said that, all I wanted for Christmas 3 years ago was for my babies to stay put and for them to be born healthy. It's what all pregnant mommas wish for babies- hence the saying it doesn't matter if it is a boy or a girl, 'just as long as they are healthy'. We want our babies to stay in us growing and then come out all pink and perfect.

So when I gave birth to these little preemies, in a way completely not how I would have planned... well, it really did not feel like a gift. The children, yes OF COURSE. But their arrival just before Christmas, definitely not.

I can tell you now that although it was not on my Christmas list and not what I thought I wanted three years ago, my little Christmas babies are the greatest gift I have received. And their early arrival brought many blessings as well, allowing them to be in a NICU when their kidney disorder was discovered. I can look at it now and say Thank you God for my Christmas presents, my precious gifts. Thank you for when and how they came. You knew better than me what they and I needed.

Three years ago, God also blessed me with another gift I never asked for. He chose me to be a special needs mom, a mom to kids with chronic health issues and developmental delays. Three years ago my life, my role and my purpose radically changed and I am a very different- and BETTER and STRONGER- person for it. The gift of parenting complex children, children with perfect souls in imperfect bodies- has truly been a blessing and a gift to me. But I'll tell you, it was not a gift I asked for. It was not a gift I thought I wanted. And although I honestly thank God for the ways it has changed me and the opportunity, it's also not a gift I would wish on someone else. It's the most important and rewarding role I will ever have in my life, and it is a role I accepted very reluctantly.

There is this saying of sorts that God chooses special parents for special children. It's a nice wonderful idea that special needs children would be born only into the most wonderful and worthy of families. It is truly a lovely concept- if only it were true!! Don't get me wrong- I know some truly phenomenal special needs families. But sadly I also have spent far too much time in hospitals not to know that there are special wonderful fragile children born into families that cannot handle their needs. That abandon them, completely or emotionally. It's horribly sad but it a reality that special needs kids are born into all types of families. I don't think their families are distinctively special before, although I do certainly believe each of those families now has the chance to become an incredibly unique, blessed, special wonderful family because of that addition.

There are some heroic inspiring people out there who will foster or adopt a special needs child because they feel called and led to provide a better life for that/those children. I have the privilege of knowing such an amazing family. My friend Lauren adopted her son who has congenital nephrotic syndrome (Max and Addie's kidney condition), knowing he was sick, desiring to provide him a wonderful chance at a full blessed life. She has gone on to foster another boy on dialysis so that he could live outside the hospital and his life has completely turned around. Lauren is my hero. The world would truly be a better place if there were more people like Lauren. I think she is the most exceptional person I have ever met.

And I know that my calling has been completely different. I did not choose this, it was not out of my noblest intentions that I wanted to take care of these fragile little people. I was just a normal pregnant lady praying for healthy kids. Dreaming of a normal typical future for them. Confident they would be brilliant and advanced and just debating what sports they would play and which medical profession they would enter. I'm not trying to be self deprecating when I say I don't believe I was inherently special. I just mean that I was like every other person I knew getting ready to have kids.

And as I started to find out, in stages, that in fact I was going to be a totally different type of mom, with a different and special calling, I'll admit I did not exactly leap for joy!! I prayed at every step that their medical diagnoses would be wrong, for healing. (And I still pray for healing. Not because I don't embrace my role but because my children do suffer and I will never stop praying for healing for them). The day I found out about their hearing loss I wept for the loss of the 'normal' future I had dreamed up for them. Finding out about Max's brain sent us through all the phases of grief from denial to anger to great sadness. To be where we are now, truly in a state of acceptance, and even more appreciation, has been a long and challenging journey.

I used to go to BSF, a Bible Study that would offer 'principles' which were short applicable truths. One I think about all the time is "God doesn't call the equipped, he equips the called." I don't think I was chosen for Max and Addie because I was able to be an awesome parent for them, because I was special and strong and uniquely qualified for this journey. But I do believe that since blessing with me with Max and Addie, God has been molding me and empowering me to become that special mother. I have become far stronger than I ever thought I could be. I have learned more about medicine than I ever wanted to know and been able to remember things and advocate for my kids. I may have been just a normal pregnant girl but for the last three years I have been on an amazing journey to become a special mom for my special kids.

I do not miss who I used to be, and I do not long to not be a special needs mom. Granted, I may be less carefree and funny and I know I'm more neurotic and well crazy... but at the same time, I am stronger, I am more compassionate, I am more grateful and I am more confident in my purpose in life. I am a better person for this journey God has placed me on.

So this Christmas as I wrap presents for my little 3 year old unexpected Christmas miracles, I thank God that He gives us what he need and not just what we think we want. That he equips us and gives us strength for the adventures he chooses for us and that he works in our hearts when at first we aren't sure we like our Christmas present.

Monday, December 9, 2013

Max's Kidneyversary

One year ago today I spent the day pacing the halls at Stanford Hospital in California. My husband and my son were both in surgery for most of the day. I had gotten very little sleep, and had developed a bad sinus infection and was running a fever. And the several hours I waited to see my boys truly felt like weeks. Definitely not one of the more fun days in my life but certainly one of the more important and exciting.

December 11th was the start of a new chapter for our family. Neither of our children have required dialysis since and our two year quest to get both of our babies transplanted had been achieved. We felt great relief and pride and joy that night as Max came back from his surgery peeing and stable. Our happily ever after had been reached. I will always smile thinking about December 11th, at Max’s chance at a whole new life and at his closure on dialysis.

And now here we are one year later and Max is still peeing, his kidney is going well and we celebrate a full year of post transplant life for Max! And a full year free of dialysis for our family!

I never actually posted here for Addie’s first kidneyversary. I had posted for 6 months post transplant and I did not have much more to say on top of that post. You can see that post here... . And I put wonderful happy joyful photos on Facebook. One reason I never wrote a proper blog post was because I felt so overwhelmed with emotion at that milestone. It was like trying to write my wedding vows- how could I ever find the words to write about one of the most significant moments of my life, about giving Addie the gift of my kidney and then seeing a true miraculous healing. And still, when I think about May 8, I get a lump of joy in my throat. I still struggle to find the right words to thank God sufficiently enough, to explain to Addie its significance enough.

For very different reasons, it has been a struggle to write a suitable reflection for Max’s one year kidneyversary as well. This last year for Max has been incredibly difficult. While Addie’s transplant was followed by a year of health and development and amazing stress free joy for her, Max’s has been entirely different. Following a reasonably stable 18 months on dialysis with minimal hospitalizations, Max has had so many infections and ailments and we have sat at his bedside wondering whether we were losing him. He has suffered. Not all the time, by any means. But far more than any precious boy should have to in his life.

And it’s not his kidney’s fault. Granted, the immunosuppression medications to prevent rejection may have made some of his illnesses worst. But mainly, it’s just been a rough year. As he gets bigger and older, some of the symptoms of his cerebral palsy have become more pronounced. And to some degree it has just been bad luck for Max, like getting RSV five days after transplant. We do not for one second regret transplanting Max nor feel it made him overall less healthy or happy. We will always know that it was the right choice for Max. But looking back on this last year, it’s hard to see past the scares and tears. It’s hard to see the miracle for all the difficult memories.

But as I was beginning to write this post, I felt God really reminding me that Max’s story is not about what all he has suffered, but rather what all he has SURVIVED. Max’s transplant story is not less of a miracle because he endured more, it is more of a miracle because he overcame more. For all he has been through, today we have Max here with us. And his kidney is still doing well. It is undeniably a miracle and we are so incredibly thankful.

In the last year since his transplant, Max has 
  • A deadly RSV infection that resulted in 6 days on a ventilator and 4 weeks in the pediatric ICU
  • A staph infection increasing his post transplant admission to 7 weeks
  • A UTI that traveled to his kidney and led to an 8 day hospitalization
  • A stomach bug that led to dehydration that impact his kidney and led to 15 days in the hospital
  • A kidney biopsy that revealed active rejection and required IV steroids
  • Three long weeks with dramatic seizure like spells following going on the steroids
  • A week long hospitalization for his spells (diagnosed as dystonia) causing him to miss his uncle’s wedding
  • A particularly bad g-tube infection that led to a 6 day hospitalization
  • A respiratory infection that led to a 3 day hospitalization
  • And finally, a completely unexpected near death crisis due to carbon dioxide accumulating in his body while at home which led to 3 days on a ventilator and 14 days in the hospital

We could look at this list as a sad list- a representation of all that Max has suffered through.  But we are choosing not to see it that way.  Instead we are seeing at Max's victory list, his badges of honor.  A list of all the miracles God has done in his life.  Through each of these trials, God has been with Max and protected him and preserved both his precious life and his valuable kidney.  And today Max's kidney function is great with no indications of rejection.  We have no idea of what the future holds for Max but we pray that no matter what storms the future holds, that God would continue to protect him and give us wisdom to care for him.  We would love smoother seas and easier years but we don't need that to be thankful and to recognize the miracles.  We just praise God for a miraculous year of survival.  We are simply overwhelmed with gratitude that Max is alive and not needing dialysis and warming our hearts with his famous smiles.

And for that reason, even though it has been a turbulent year and an entirely different experience to Addie's transplant, Today we celebrate.  We recognize that sometimes miracles are dramatic turnarounds. Sometimes miracles restore health completely and take our breath away.  But sometimes miracles are the victory of surviving day to day.  Perhaps less spectacular and exciting to witness but absolutely no less miraculous.  Therefore we will celebrate Max's kidneyversary with equally grateful hearts and will continue to pray for more and more miraculous days ahead for sweet Max!!!

Max's Transplant Journey in Photos: 
December 10th, 2012- Daddy and Max heading to the hospital,, after his last ever dialysis treatment!
December 12, 2012- Daddy gets to see Max for the first time after surgery.  Daddy is doing great, Max is still pretty out of it and recovering. Check our all the pumps, he was on some serious meds!!

December 14, 2012- Max seems to be recovering from surgery.  The breathing tube is out, he is awake and peeing and doing well

December 17, 2012- A unexpected and frightening turn.  Max developed an RSV infection and was unable to breathe sufficiently on his own and had to be placed back on the ventilator.  His kidney began to shut down in response and he was one day away from needing to go back on dialysis when he did start peeing again. 
December 22, 2012- I will always think this is the saddes photo ever.  It was Max and Addie's second birthday and we had order banners and wrapped presents.  Max was on the ventilator and completely sedated and given medication to prevent any movement, basically in a medically induced coma.  His vitals were all over the place and I was so worried.  We tried so hard to still celebrate but it was so sad and trying so hard to be happy was difficult.  This picture reminds me so vividly of the emotions of that day. 

December 25, 2012- Christmas Day in the PICU.  Max had been extubated so was no longer on the ventilator or completely sedated which was great but he still felt terrible and spent the day either asleep or coughing.  Thankful for nurses and doctors who work holidays taking care of our sweet babies. 

December 26, 2012- During his hospital stay, Max was covered in love by his parents, both sets of his grandparents, his Uncle Adam, Aunt Emily and Uncle Lachlan, as well as many of my aunts and uncles.  We know he felt his love encouraging him to keep fighting and stay strong!

December 27-29, 2012- Max is feeling better and gives us his first smile in 16 very long days of missing those precious smiles!

December 30, 2012- it is two steps forward and one step back recovering from RSV.  After a week of breathing without the ventilator, Max tires out and needs more support again.  Avoids the vent again but requires BiPap for 5 days, which is no fun at all for him. 

January 3, 2013- Max is breathing better and is able to come off Bipap and back on just a canula.  He is very excited to lose the big mask!  He is still pretty puffy from his kidney's sluggish recovery.

January 5, 2013- Mommy has to leave Max still in the ICU to go home to Texas.  Very hard day for Mommy. 

January 25, 2013- After nearly 7 weeks in the hospital and another complication (a staph infection), Max is finally released from the hospital to finish recovering in California at the apartment with his Daddy and grandparents and aunt and uncle

February 23, 2013- After 11 weeks apart, Max and Daddy return to Texas!!! Our family is reunited!!!

November 8, 2013- A year filled with many ups and many downs.   One month ago Max was as sick as he was at his worst with RSV.  He was again on a ventilator fighting for his life.  Thankfully he is a fighter!!! Another thing for him to survive and conquer! 
December 7, 2013- For all he has endured this year, Max is still the happiest boy I know! His smiles melt hearts and he is a great joy in our lives.  We feel so blessed to celebrate his victories!