My Emotional Journey with my Absolutely not Terrible Two Year Old...

As if it is some sort of biologically imprinted destiny, Addie learned the art of the tantrum about a week after she turned two.  And just like that, we understood what term 'Terrible Twos' is all about.  In a way it is at times almost adorable as she has learned this new move of angrily crossing her arms and looks like a tiny little teenager.  Then there are the not so adorable parts like the tears and screaming and the arms flailing about.  And in case you were worried these meltdowns were caused by some sort of sad circumstances like getting labs drawn or medicines or anything...oh no, they are almost always caused by us not allowing her to watch her Elmo DVDs at the exact moment she wishes.  It's pure Elmo rage. And the rest of the time, she is the sweetest most adorable person in the world.  She gives kisses and laughs and reads books and is just the happiest little thing.  But oh the tantrums... wow.

I read on Facebook the other day that a friend had two 2 yr olds for a few weeks as her one yr old just turned two and his brother was not quite three.  And since it had been a day with a couple of tantrums, I was like omg, imagine TWO TWO YEARS OLDS!! The horror!! Of course as soon as I said that aloud to my dad, I realized the irony that I do of course have two 2 yr olds.  Haha.  But honestly I do not feel like I have two two year olds because Max does not have any 2 yr old tendencies.  He has never even come close to a tantrum.  He does not demand anything, he is not getting into mischief or disobeying or screaming.  He is still pure goodness.  He inhabits the big body of a two year old but for now, he is still our baby.  As innocent and perfect as cuddly 3 month old. 

A speech therapist was evaluating Max's language development and they asked me if he knew the difference between when we were scolding him or fussing at him and just talking normally.  I looked confused.  She asked if he knew when we were telling him he was being bad.  And I finally was like 'but Max has never been bad!'  He has never been scolded.  I mean unless we were going to fuss at him for vomiting...!  But yeah, he doesn't cry for things he wants, he shows nothing but love and warmth for everyone.  And his feelings for Elmo seem to be fairly neutral.  I am confident that at least one of my children loves me more than a red furry puppet.

Sometimes I think about all of that and I just feel so lucky.  That I get to be the mom of a child who is flawless and embodies the beautiful innocence of a baby.  To have a child who smiles every time I look at him and who is grateful and excited for any activity we plan.  The term 'special' in the term 'special needs' makes a lot of sense to me. Because a 2 yr old like Max is so rare and so unique and he is precious in a way for his differences.  For his disabilities.  For the ways in which his cerebral palsy has changed him.  I suspect he would be less fiesty than Addie regardless because she was clearly the boss even in my tummy... but I also know that inevitably if he was a developmentally appropriate 2 yr old, he would have done something wrong by now, he would push limits and he would demand more things and express more disappointment in not getting it.  So I know that his innocence and purity are largely caused by his condition.  Which is where the emotional part for me comes in...

More and more I have these moments of feeling grateful that Max is so gentle natured and loving.  I sometimes even find myself being thankful that he isn't running all over the house opening doors or heading upstairs.  And then as soon as I have those feelings, I immediately feel guilty and the familiar sadness creeps back in.  Because although I cherish Max's angelic qualities, I do, at the same time, feel sad for the fact that he is not developing into the mischevious little toddler his sister is.  While his immotility can make life easier, it is of course accompianed by the heartbreaking realization that he cannot explore his world and enjoy opening doors and mastering stairs like Addie can.  He doesn't demand toys or get worked up over things because he cannot really play with them and he does not seem to have the drive and motivation that Addie does to play.  Or maybe he has the drive but since he cannot, he has just learned to be happy without.  I am not sure.  But I know that his cerebral palsy has definitely changed him and contributed to some of his 'non-terrible two-ness' and so in that respect, I do feel sad that he is not crossing his little arms and pitching a massive fit at me.

I have written a lot about Max's neurological issues from the beginning.  And I have tried to be candid about it being a struggle, while at the same time wanting to represent the hope we have for Max and our tremendous love for him.  It has at times been a hard balance to strike and sometimes I feel I should err on the side of being very positive because people want to know that you are okay and I want to publically celebrate Max's journey and all the good we see God doing in his life.  So while I am sure I have acknowledged that it has been hard, I have not written a lot about the sadness that has been in my heart since finding out about Max a little over a year ago now.  A sadness that is still there.  I carry a lump in my throat and a pit in my stomach for Max.  I get distracted, I have breaks from thinking about it, I get busy at work or caught up with Addie and it goes away.  But when I think again about Max, or I spend time with him, the lump and the pit would come back.  Part of the sadness comes from all the emotional drama associated with finding out. We thought he was getting worse, we feared his time with us was limited, we doubted he would be able to be transplanted, he had discussions about DNR (do not resuscitate) orders. Although Max's delays had been apparent for some time, it seemed to become so serious so quickly.  And it broke my heart.  Everything we had imagined and hoped for Max seemed to fade away and was replaced with so much fear.

And it coincided with a really unhappy stage in Max's life due to a hernia and reflux and lots of dialysis. He was miserable and we felt so sorry for him, for what he was enduring now and for what his future was going to be.  We still tried to find the good, we still tried to be positive, we still adored Max and loved him and our time with him... but everything was tainted with sadness.  For a long time really. Even after the initial fears and terrible concerns began to fade and we found new hope with transplant and he got happier after his surgeries for his reflux and hernia, there was still sadness.  It was less constant and less gut-wrenching but it did not totally go away.  And Addie started doing more things, specifically walking and really understanding us and playing with her toys in new smart ways.  And as we rejoiced in these new steps for her, our hearts were sad for Max not doing any of those things.  I would hold him and just feel so heavy hearted and sad for my sweet baby boy.  It was and is a sadness I do not feel for Addie.  I have moments of feeling sad or sorry for Addie.  When I think about everything she has been through or about her future challenges, I can certainly cause myself to get melancholy. I certainly worry about Addie.  But there is no lump in my throat for Addie.  Sadness is fleeting with Addie, it does not settle in down in my stomach like it does for Max.

With the sadness comes its own guilt and philosophical pondering.  I wonder if I am feeling sad for myself and for my future that now looks so different.  Which definitely makes me feel bad because that seems selfish.  But I do think there is an element of it that is grieving for myself or for my family more generally. For the milestones that I used to look forward to- like the kids going off to school- which now seem daunting. For the fantasies and daydreams that I have long held that no longer look the same.  For the added stresses, financially and in my relationships.  Right or wrong, I think that sadness is there.  But it is getting better.  I think Al and I have both reached a point of really accepting a new normal and a new future.  I know that if I could trade Max for a healthy different baby, I definitely would not.  I love Max so much and want him in our lives for as long as possible.  Even if that means different dreams and different plans.  And Max is a huge blessing.  If the 'worst' is true and he does not really develop much then that would mean I will always have my angel snuggle bug baby and instead of dealing with all the teenage histrionics that I know we will have with Addie, I will keep my innocent precious boy as perfect as he is now.  Looking at it that way, it seems foolish to feel sad for myself.

Where the sadness still is strong is feeling sad FOR Max. Not because of him, because no doubt he is making me a stronger and better mom, but for the difficulties and limitations he faces.  I want him to be able to explore his world and I want him to be able to discover the silly joy of getting into things you are not supposed to, like Addie's face when she finds a bathroom unlocked and she can throw Cookie Monster in the potty and laugh her crazy happy laugh.  I want him to be able to talk and tell me about how he feels and what he likes.  I want him to be able to eat junk food and demand McDonalds' for dinner.  I want him to have friends his age (because he already has more nurse girlfriends than anyone I know!) that he can play hide and seek with and dig in dirt with.  I want him to someday be a teenager who gets in trouble for texting his girlfriend from class or gets disappointed when he doesn't make a sporting team he tried out for.  I want him to live independently and get married and act as excited and adorable about it as his Uncle is at the moment.  I long for those things for Max because they are the wonderful joyful things in life.  They are what make me happy, what makes Addie happy, what makes other people I love happy.  And so because I want happiness for Max, I want those things for Max.  And so faced with the reality that most of those things are very unlikely to happen for Max, my heart hurts for him.  I feel sad because I want more for Max than his body may limit him to.  And that is the sadness that gives me my lump and my pit.  That is the sadness that sometimes hits me unexpectedly while watching Addie play or while teaching healthy happy teenagers. 

In my head, I have a lot of reassurances for myself.  I know that for many people happiness does involve running around, exploring independently and talking freely and eating easily.  Because those contribute to my happiness it is easy to think that they are necessary for happiness.  But that is not true.  Max is so happy.  He does not seem to be frustrated by his disabilities.  Maybe if he does develop more cognitively, he will become frustrated which could be a blessing and a curse. Maybe he will never really develop a true understanding of his limitations and this naivety could end up being God's greatest blessing to him.  Either way, right now we have a happy boy. And I know Al and I will do everything we can to ensure he has a life full of love and laughter and every bit of happiness we can provide. So if he is happy, why do I need to be sad for him?

Then there is my fundamental but somewhat conflicting belief that God makes no mistakes in making us and that therefore Max is perfect.  Just as he is.  He is exactly who he was meant to me.  If I start to think about this a lot, my head starts to hurt.  And I start to question if I can separate how God made Max and the event that caused the brain damage.  Can I think that Max is perfect as is and yet still hate that he experienced that trauma?  I tend to think so but I certainly do not have all the answers... I just keep asking God my questions and returning to my core fundamental belief that Max is not a mistake and he has a tremendous purpose... just as he is... bad kidneys and CP included.  So again the question- why do I need to feel sad if I KNOW he is who he is meant to be?

Finally on top of all of that, I also know in my head that MIRACLES HAPPEN.  I have witnessed many.  And Max's story is far from done.  So while I accept that he may very well never walk or talk and have significant cognitive disabilities and I am in no way in denial, I also know that forever is a long time away and that things could change.  Dramatic sudden miracles could happen, or more likely some gradual slow but significant miracles can happen.  I remind myself all the time that I really do not know what Max's future has in store.  So... really I shouldn't be sad about it.

Some days it is like a little mantra in my head:  Max is happy, Max is perfect as he is, Miracles happen.  And I tell myself these things over and over.  And it helps.  I am glad I have that logical grounding.  But honestly I will tell you, the sadness is still there.  All the knowing this in my head hasn't managed to evict the pain from my heart.  Mantra and all.  It still hits me.  Something he does, something Addie does, something another parent says, a teenager (or even worse an adult) using the word retarded... in so many different ways and despite my best intentions to BE POSITIVE, the sadness still hits me.  And I still spend a lot of time with that lump in my throat and that pit in my stomach.

And you know, I have just decided that is okay.  I have a friend who is going through something similar with her son.  And I told her the other day in a text that I am learning that heartache and hope are not mutually exclusive and that joy and sadness can co-exist in the same second.  My journey as Max's mom is changing me every day.  It is making me stronger, it is making me braver, it is teaching me priorities, it is teaching me the depths of my love.  It is a source of great joy.  And it is a source of great pain and sadness.  It is both.  Simultaneously all the time.  And that is just how it is right now.  I will say that it is much better than it was a year ago.  The joy and hope are stronger, the despair gone and the sadness less suffocating.  I am happier, more at peace and stronger for this last year as Max's mom.  I have come a long way through time and prayer and love from family and friends.  I came a long way in one month in December when God showed me in a huge way just how much I need Max in my life.  He reminded me of something I always know but sometimes forget... that at the end of the day, I just want my babies alive.  The rest I can figure out.  And so I am giving myself a 'get out of guilt free card'... allowing myself the freedom to feel sad for my own future sometimes, to feel sad for Max, even when logic tells me not to.  But also the freedom to enjoy those moments when his disabilities make him that extra bit more lovable or our home that extra bit more peaceful. I'm trying to not second guess my feelings all the time or feel bad for them and overanalyze them.  I'm on a crazy difficult journey and I am hanging in there and getting stronger every day and all the feelings that come with that are okay. 

This is more than I have ever really shared on my blog before.  But I wanted to share it.  Because it is real and honest and where I am at.  Because I have started realizing that people with sick kiddos read this blog and I want to say that the sadness is real but doesn't mean that there isn't joy and hope.  And because I wanted those of you reading and following our journey to keep praying for us.  For Max, of course.   But also for me, for the joy to outweigh the sadness and for the grace and strength to keep smiling on the days when that lump is there and everything does feel sensitive and sad.  And I will keep sharing our wonderful journey with our terrible two princess and our terrific two angel!

Our New Normal

As most of you probably know, Max and Al returned home last Friday afternoon.  We had been holding our breath and hoping but not wanting to 'get our hopes up' at the same time for about a week.  We knew it was possible, then it started looking likely but I will tell you that it was not until I got the text that they had boarded the plane where I really believed it was happening!!  They came home, and Al's sister Emily came as well to help get everyone adjusted to our new normal.  It was a wonderful weekend, Max was so smiley, he was talking and cooing away at Addie (who basically ignored him) and we had fun just all being together again.  I was sitting around the table on Saturday morning eating hot Shipley's donuts with Addie in her high chair and Max in his wheelchair and everyone smiling and I just kept thinking, this is what we have been dreaming of, this is what we have been working towards and it is here, and it is wonderful!

We have spent the last two years looking to transplant as our goal and our hope and it such a bizarre and wonderful feeling to be there, to have arrived as this long awaited for end point finally be here.  This is a poor analogy and I would hesitate to use it had Al himself not used it many times... but it is kinda like preparing for a wedding.  It is so much preparation, something you have been planning and dreaming of and organizing for such a long time and then it happens and your life changes and you come home from your honeymoon and you think 'ok we are married! wow, now what?' and you start figuring out the reality of what exactly will daily life look like now and what do you spend all your time thinking about and planning and obsessing over now that the big event has passed.  Now I would like to put a disclaimer on this comparison that my wedding day was the happiest day of my life and the most beautiful memoral wonderful experience and in no ways really similar to the terrifying, stressful, sad experience we had watching Max suffer on the ventilator for days in December with his transplant.  You walk away from a wedding with precious memories and images you try to hold on to and we walk away from this transplant with a fair amount of post traumatic stress disorder and a lot of images we long to forget.  BUT, both were life changing and wonderful important changes and the comparison is just to say that we are in that place of figuring out a new wonderful normal and not knowing exactly what to 'plan' next.  And just like a newly wed couple quickly relaxes into the calm of not having anything to plan, we are adjusting to this novel exciting idea that there are no big surgeries, no crises awaiting and that we can just live in the moment and enjoy our time together and just live each day without the need to work towards something.

There are so many wonderful things about having no one on dialysis.  It feels so freeing to be able to plan things without considering how it will impact dialysis.  We have freed our house of so many medical supplies that it almost looks like a home and not a hospital again!  There are just less things that can go wrong, less problems to watch for.  And much more time together, and more smiles and happiness.  Transplanting Max and Addie was the best decision we have ever made.  We said going in 'No Regrets' and Al and I reminded each other of this when the days were hard either with Max being sick or with us just missing being together.  We were committed to not regreting our choice and to not blaming ourselves if the outcome was not everything we had ever dreamed it to be.  So we were determined not to live with regrets no matter what but I can tell you that it was been totally wonderful, worth the efforts and the expenses and the separation and the losing of organs.  Worth it all.  The babies are happier, our family is happier and it was the best decision we could have made. 

I will say that our normal still does not resemble any one else's normal.  In part because as a transplant recipient, the babies do still have some medical concerns.  So they have to be watched more carefully and get labs and have their blood pressure monitored daily.  So while they are 'healthy', to some degree they do still have a medical concern so that is still part of our life.  Take today for instance... I wake up to Max coughing, sounding like he wants to throw up and generally seeming miserable.  I sit with him for a while trying to comfort him and pretending to be a doctor trying to diagnose him.  Once Emily gets up to hold him, I then go to check on Addie who is still asleep.  I realize when I check on her that her bed and PJs have blood on them.  I panic, check her diaper which seems to be full of bloody poop.  Addie has been dealing with either pink eye or an ear infection for weeks and just yesterday went on a new antibiotic so I am wondering if it is a reaction to that or you know some new medical issue just waiting to enter our lives.  I clean her up and take pictures of the diaper and store it in a Ziploc, feeling sufficiently disgusting.  I text her nephrologist and then head off to work leaving Al and Emily with this handful.  I get there and touch base with our dr and my mom comes to get Addie and take her into the hospital.  A few hours of worrying later and it is determined that it is not blood but rather a very rare strange side effect to the antibiotic whereby it turned her poop red. A benign side effect, other than the heart attack it nearly gave me this morning!  So my mom brings Addie back home while Emily and Al try and soothe Max, checking his temperature with neurotic frequencies.  Around 2pm someone from Medicaid is due to arrive to assess Max for help with daily living based on his disabilities so they are preparing for that interview.

And that is today's drama.  More dramatic than most but not completely out of the ordinary either.  It's a busy dance with hearing aids, patches, feeding tubes, wheelchairs and all kinds of things I never imagined in our daily life.  But we are getting the hang of things, some more quickly than others.  Addie's hearing aids are surprisingly easy now... But she still isn't talking.  We are excited to move Max out of the living room since he is no longer on his machine... But realizing that as he is so heavy now and still unable to support his head and therefore most difficult to carry, that upstairs is not really an option so we are trying to figure out where to settle Max in.  I won't say they are small challenges because they are not.  In some ways dealing with their disabilities is more challenging than dealing with kidney stuff.  Less terrifying but more upsetting. But at the end of the day, although these issues can make us worried or sad, they are not life or death issues.  The babies are healthy and for the most part happy!  They have overcome tremendous obstacles and we stand amazed at where they are at.  And we feel lots of hope!  I have meant to write a post one day about what Dr Google has to say about Congenital Nephrotic Syndrome... but to make a long post short, the odds were stacked against Max and Addie still being here with us today.  Much less being so happy and incredibly cute :)  So while our life is not and never will be easy or normal and while we still deal with things that to others may seem incredibly difficult, we are happy to be here and are genuinely enjoying our new normal life, even on the days when it includes red poop and drama galore!