Special Needs Spotlight

Our lives began to change months before Maaike (Micah) was born or diagnosed.  This story starts about the time when we found out that we would be adding another girl to our family and we decided to make a move to the other side of the world.  We were so excited to open the world to our children by moving to Beijing, China.  I had no fears about giving birth in China and we never had a hint that she might have special needs.  When Maaike was born we initially thought she merely had a birthmark on her lower lip.  We told our other two children that she had put some lipstick on, but the next day I felt a series of bumps under her ear and our plans started to unravel.  Our pediatrician came back after hours and off the record to tell us we needed to get Maaike back to the States as soon as we could get her passport.  I flew back with Maaike when she was 9 days old.  The next day she was diagnosed with cystic hygroma, a lymphatic malformation in the tongue, oral cavity, jaw, and airway.  Five weeks later our family was reunited and we embarked on the adventure of opening up the world to our children in a whole new way.

Rian:  Even after Maaike’s diagnosis came I figured it was only a short matter of time or prescription filled before our lives went back to normal.  But on the morning that Maaike and I were to fly back to China our ENT called me in to tell me our next step was a tracheotomy or we would be looking at heart failure.   I remember feeling so alone in that moment.  My husband skyped into the conversation with the doctor, but he was literally on the other side of the world.  I left the office and found the nearest almost deserted parking lot and pulled over for a good cry.

The biggest difference between now and then is that I don’t feel alone.  I still have good cries some days, but I have a network of other trach-moms, cystic hygroma families, special needs families, and loving specialists that buoy me up.  Not to mention the tremendous strength of having my husband and other 2 kids on the same side of the world and in the same house hold.  Strength comes in numbers.

Rian:  Maaike’s care varies by season. Summertime requires that we prepare when packing.  We are free to go wherever we want to as long as we have her portable suction in tote.  Fall ushers in our “hibernation” from life outside the home. We are homebound from October to May.  A simple runny nose means constant suctioning, increased oxygen, and gagging throw-up several times a day.  A cold can quickly turn to pneumonia and hospitalization.  This means we decontaminate when we enter the door, changing clothes and washing hands. 

Maaike is termed a “technology dependent” child, meaning she needs the support of electronic equipment to survive.  So besides her suction machine, Maaike has 4 other machines that support her while she sleeps.  Sleep is a luxury.  Maaike has slept through the entire night only once in her life.  I have only slept through the night once in her life.  Her machines alarm any sign of distress, on average three times a night, but have gone off upwards of a hundred times in one night.  I wake up every time.  

We have food issues, speech issues, and we are learning sign language as a family.  That being said our lives are filled with laughter, wrestling before bed, and play dough in the carpet.  Friends often ask how we manage and I always answer that we do what we have to do, just like everybody else.  We are all given the strength to carry the challenges we have been given. 

Rian:  I worry most about who’s voice will win.  Will Maaike hear the voices of the ignorant few that have and will choose to see only surface deep? And we worry even more that they will miss really knowing her and seeing her beauty.   Or will we win?  Will the voices of those who know and love her best stifle her doubts and build her confidence?  Will she be able to accept all of who she is, the common and the different, and know that it is her and she is beautiful?

            

Rian:  While we were waiting for Maaike’s tracheotomy she had to go on oxygen.  The tech arrived very late one night to drop off the equipment and train me how to use everything.  Maaike was asleep so he first showed me everything and then asked me to get Maaike so he could show me how to hook her up.  Upon seeing her he went into a panic of concern and stared fumbling around trying to get the oxygen on her as fast as possible.  This in turn put me in a panic until he explained that he had never seen a child so deprived of oxygen before with such purple lips.  I then relaxed and had a good laugh as I explained that was the natural color of her lips.  Maaike was born with her lipstick already on.

Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Rian:  Like the other parents represented here, I would say, just ask.  Ask me what is going on with her.  Ask me what her story is.  And if you must, ask me what is wrong with her.  Granted, some methods of asking come out smoother than others, but I take no offense.  I know it takes courage, so if you are curious or concerned, just ask.

I wish people understood how important eye contact is.  Don’t look away, avoid us, or pretend we don’t exist.  It hurts to feel unworthy of a direct glance. Your willingness to look us in the eye acknowledges our existence and really does mean so much.

Rian:  Perspective. We were just released from the hospital last Saturday, only to end up in the ER with bleeding on Sunday and right back to the PICU.  She is uncomfortable with the swelling from her latest procedure and this morning I was just feeling bad for her.  It is so hard to see your child in pain and right now her pain seems endless.  As I have watched her struggle to fall asleep covered in wires and tubes, it is easy to feel bad for her.  But my sorrow for her was instantly flipped upside down after over hearing a nurse outside our room.   The nurse had found extensive bruising on one of the children she had helped bathe.  They were preparing to call social services.  In a moment I went from sorrowing for Miss Maaike to knowing that she was indeed one of the luckiest children alive.  Every family has their challenges.  Raising kids is hard, special needs or not.  But when it all boils down, being protected, fed, and loved means everything, anything more is just bonus.