The Start of Something New

The beginning was quite a blur.  I remember many doctors coming and speaking with us.  Sometimes it would be good news and sometimes it was terrible news.  At first we weren’t even able to try to feed him because they weren’t sure if he would be able to take or process food safely, even breast milk.  Seth and I spent a great deal of time sitting together in tears with the full range of emotions cycling through us.  During it all we were there for each other and I am so grateful to have had him with me through it all.  He truly was the only person who was going through exactly what I was as well.  I am amazed that we managed to get through those first few days and somehow still care for Reyna.  I can’t imagine what the very beginning was like for her.  Despite all the upheaval in our lives she amazingly remained flexible and cheerful. 

During the first few days they ran multiple tests in the first two days and we learned a huge volume of information.  The obvious was confirmed, Logan had a severe and atypical cleft lip and palate.  It was wider than normal and parts of his nose did not develop that normally do even with a typical cleft.  An MRI confirmed that he was born without his right eye and his left eye was so severely underdeveloped that it would also have no sight whatsoever.  The MRI also revealed that he had some brain differences.  A large part of his corpus callosum, the pathway between the two hemispheres, did not develop.  He also had some other more minor differences in his brain such as fatty deposits called lipomas.  More frightening they found that part of his brain was protruding through his skull in the forehead area and he would need brain surgery in the next day or so.  As it turns out, this part was an initial misreading of the MRI and Logan thankfully did not need brain surgery at all.  We also got the wonderful news that his heart, lungs, and kidneys all looked great.  In addition, despite differences that often indicate spinal cord defects he had none found. 

As more and more positive news came back they allowed us to begin to very cautiously feed him.  Due to the cleft Logan was unable to naturally breast feed, but I was able to pump milk for him.  It felt so good to be able to do something for him as he lay there so vulnerable in his hospital bed.  At first he ate by drops from a syringe but eventually we began using a special cleft lip and palate bottle with him as he ate more. 

As Logan’s tests were completed one last big question loomed.  Would Logan be able to hear?  Now that we knew he was stable and likely going to survive this question became vital.  It seemed like the last thing, at least at this point in time, that could greatly impact his quality of life.  The first test came back inconclusive and they needed to do a retest.  Then in his bed we found most wonderful card we had ever received.  On a small square of colored cardstock Logan was awarded a shiny star for a passed hearing test.  It was without a doubt the best Christmas present ever.

Logan's Arrival

My labor with Logan progressed steadily and things seemed to be going smoothly.  Yet when they broke my water they noted that I had Polyhydramnios which is too much amniotic fluid.  Despite all my specialized sonograms this had not been previously noted and of course added to my worry.  Almost immediately after breaking my water I was pushing.  Suddenly many people joined the room since Logan was at high risk and would likely need to go to the NICU.  The pain was excruciating and notably different from that of Reyna’s labor.  I, who was determined she’d never be that lady screaming at the top of her lungs, was likely scaring every expectant mother in the entire state hospital.  The whole room seemed a whirl and I remember Reyna, for whom we had no one to watch, being taken in and out by kind nurses and Seth turning sheet white and nearly passing out.  Thankfully the nurses had him sit and drink some juice and he was okay.  He later shared he thought he was going to lose me or the baby or maybe even both.  With the level of pain in that moment I would have agreed with him.  At the time I thought the reason it was so bad was because of the prediction that Logan would be around ten pounds.  As it turned out Logan was only seven pounds two ounces.  The pushing was so difficult because his soft spots, which normally help the head mold during birth, were fused.  We didn’t know this until later but other differences were immediately noted. 

Logan cried a nice loud cry immediately and it was the best sound in the world.  He was bright and pink and had Apgar scores that rivaled his clearly healthy sister.  Due to this immediate positive look they allowed me to hold Logan.  As I embraced him I took him in and despite his obvious large cleft he was precious to me instantly.  As I began to look at the details of his features I started to be washed with worry.  I noticed his ears had skin tags all around them and then immediately after noticed this I saw he was not opening his eyes.  This realization was one of the most defining moments in my life.  Everything seemed to stop for a moment in time and then I was filled with panic.  I alerted the nurse to this realization and Logan was immediately swept from my arms. 

Seth and Reyna were able to go with Logan, but I was left overcome with anxiety for my little baby.  As they completed my extensive stitches all I could think about was the possibility I may not see Logan alive again.  I wanted to jump up out of the bed and run to the NICU.  Seth soon came back to let me know Logan continued to be stable.  Just a bit later I was able to join them in the NICU where I saw my sweet baby hooked up to various devices.  As we had done research on the possible outcomes I was prepared for what I may see in the NICU but it was still hard to see Logan that way.  I was so grateful to see he was alive and deeply thankful to be his mom.

Look Kids! Holland!!

If you are a parent of a child with special needs or are in connection with the special needs community you have probably been given the poem “Welcome to Holland” at least a few (dozen) times. It is with certainty that I feel this poem is given out of love and support even though it doesn’t always feel so warm and fuzzy if you are living it.  If you have not had the opportunity to read this poem it can be found on multiple sites including http://www.our-kids.org/Archives/Holland.html
  The first time I read this lovely poem by Emily Perl Kingsley was during one of my special education classes in college.  When I read it I cried.  It was so moving, touching, loving…  After the birth of our son I was given this poem again.  Again, I cried.  However this time I was not crying because I felt moved or even at one with the author.  I cried out of guilt that I couldn’t even imagine being grateful to be in “Holland”.  I was grateful for my son, deeply so, but I was devastated at the loss of “Italy” not just for myself and our family but especially for Logan.  He deserved to be in Italy and even Holland seemed far too lovely with its windmills and tulips to be the equivalent to all he was facing.   Over time, as I was given this poem periodically, it became easier to read and I was able to feel some connection of experience.  Through a more recent discovery of the blogs of several individuals who are also parents of special needs children I have felt even more real, raw connections with others who have found themselves in similar, yet individually unique, circumstances.  Upon a blog written by Dana Nieder (uncommonfeedback@gmail.com) I found her modified version of “Welcome to Holland” entitled “Amsterdam International.”  It can be found at http://niederfamily.blogspot.com/2010/10/amsterdam-international.html .   This depiction sounded much more like our experience and alleviated much of the guilt for not being able to appreciate “Holland” after Logan’s birth.  The courageous stories of others have been such a gift.  I have loved reading the unique journeys of several individuals and families who have embraced a child with special needs.  I have learned so much from them.  It is my hope that I can give others even one bit of what I have gained from so many courageous writers.  I also hope that this can serve as a celebration of the lives of our two children.
Whether we are in Holland or still stuck in the airport, we’re there.  When I think about such a deviated trip I cannot help think of the not so famed wonders of the world.  I kind of imagine it like taking your kids on a trip to see the world’s largest ball of twine.  You wish you could have taken them somewhere grand like the Eiffel Tower but for whatever reasons you could not.  However, even though you know the world’s largest ball of twine is not the prized destination of anyone, you do your best to help your kids enjoy the trip.  You mask any disappointment and shout out as though it is the best thing you have laid eyes on, “Look kids!  The World’s Largest Ball of Twine!”  You do your best to make this experience live up to those you know their friends and classmates will be talking about one day.  You finally get everyone out of the car for the full effect.  You do your best to gain the most memorable, meaningful experience you can get out of twine because it is what you’ve got and you are going to make it damn amazing if it kills you. There will be eye rolling and questions of why so and so got to go to anywhere but here France, but there is nothing you can do to change this destination.  (Lucky for us our kids are too young to yet to make such a fuss so hopefully we can convince them of the wonderful qualities of twine by then…)   Along the way you will find that on such a journey you will have unique, unexpected and cherished memories even though parts of the trip were much harder than the well planned, predictable AAA vacation.  Only those along for the trip will fully understand your journey giving you something so special to share between you.  You will also meet others who have had similar journeys.  Those who can share a laugh or cry, swap stories with you and provide travel tips.  So here we go kids.  Holland!  Sure beats the hell out of twine right?