Tuesday, May 12, 2015

This is Five

Dear Anabelle Rose,

Today you are five years old.  When parents decide to have children, it is with the perfectly reasonable expectation that they will have the chance to watch them grow and bloom into adults.  There are many reasons why this may not come to pass, and in a few of these cases, you have the burden of knowing ahead of time that it probably will not.  Granting that no one truly knows what the future will bring, we have had to live with the fact that seeing you into adulthood is only a minute possibility.

Day One: before we knew anything

What a rare gift this is!  Every new year with you is a precious jewel and the answer to a prayer!  We do not have the luxury of taking one single day for granted.  As you reach the half-decade mark, we marvel at the young lady you are starting to become.  Your face and body are slimming down and losing baby fat.  Your hair is long and lustrous.  You have graduated from toddler clothes to girls.

And we know you are no longer the baby, because there is a new baby!  And you are a big sister!  And you are an AWESOME big sister.  So tolerant, always laughing at his antics and chaos, always sharing your toys

 Being tickled

Petting the baby

Baby caterpillars

Sharing naked time

And now I have a confession to make, Rosie.  Approaching this milestone has been difficult for me.  While we rejoice in YOUR accomplishments, this day also marks another milestone.  It has been five years that we have been living as a special needs family.  Five years of a sweet girl in a growing body who will always be a baby.  Five years of your needs taking precedence over everything else in life.  Five years of having to be home every day at 4 pm when your nurse leaves.  Five years since your dad and I have attended the same evening event or had a night out together.  Five years since we have had a vacation, because there is no one we can leave you with, and you are too fragile to travel.  Five years of having to tell your sister, "I'm sorry, I wish we could, but Anabelle..."  Five years of doctors' appointments and therapists' visits and hospital stays controlling our calendar.  Five years of physical, emotional and financial struggling.  Our love for you holds us up and keeps us putting one foot in front of the other, but it is not always easy.  It usually is not.  We do not blame you or resent you, but the medical conditions that have made life so difficult for you have also made it difficult for those who love you.

  This is your body.                                             This is your body after 3 kids 
                                                                              and 5 years of caregiving.

Any questions?

The reality of life as a special needs sibling: Elyse presented this to me for Mother's Day.  There are so many things you don't get to do when your sibling has so many needs.

But there are gifts, Rosie.  There are so many gifts you give to your family and especially to your siblings. Big sister is one of the most compassionate children I know.  She worries about others' feelings and always wants to know what she can do to help.  Baby brother is a rough hellion now, but learning to interact with you will teach him to be gentle and kind.  And they love you.  And you love them.  And your bond is so, so special.  And no matter how long you are with us in this life, that will be a part of them forever.

Making nice with Sissy

Good night stories

They are always so proud to show their sister off

Thank you for being the most selfless and generous member of our family.  Thank you for always reminding us to slow down and care for one another.  Thank you for offering us a calming space to retreat to when things seem too much.  Looking forward to the next year of memories



Tuesday, December 9, 2014

A Love Letter

As most of you already know, we added a new family member to our crazy world.  Wesley Robert Linzey was born June 3, 2014 and our family is now complete.  What most of you probably don't realize is that Wes was never a given.  Wes was a gift.  And most specifically, Wes was a gift from my husband to me.

I always wanted 3 children.  My husband always said, "Two and then we'll see."  When Anabelle was first born and diagnosed, the possibility for a third seemed a long stretch.  We were sooooo overwhelmed.  Our time, our energy, our finances, our relationships, everything was stretched to the limit.  We could hardly see how to navigate the future with the family we had, much less put more on ourselves.

When Anabelle reached the age of 3, I finally felt adjusted enough to start noticing the things I was missing.  Anabelle had opened us up to so many things we never knew before, we were definitely different, better people than we had been, but the things we had NOT gotten from her started to gnaw at me.  Anabelle arrived to us in pretty much her completed, perfect form.  She has not changed much from the day she was born to now.  And while there are many, many blessings in this (who doesn't love a baby who never cries, never tears the house up and never argues back), I REALLY MISSED watching a child grow and learn.  The amazement at learning that hands can grasp.  Looking into your face and seeing recognition.  Eyes lighting up at the first taste of ice cream.  My soul needed that like air.

We started the conversation.  I, the ever impulsive one, was ready to dive in.  My husband, the logical one, was trepidatious.  Can we afford it?  Do we have the time?  Do we have the energy?  Can we give it what it needs and still give the children we already have what they need?  If this was a solitary decision, he might have gone with "no".  But I will never forget the last words I ever spoke to him on the subject: I am not done being a mother.  A few days later, he said he was ready.

Wesley was not a glimmer in his eye.  Wesley was not a missing piece in his heart.  Wesley was not an ache and a yearning that he felt.  But he recognized how desperately I needed this in my life.  And he chose to gift me with what I needed, despite every reservation he felt.  Do not misunderstand me, he is beyond thrilled with this baby boy now that he is here.  But the decision to create him came solely from a place of love and respect for ME and my dreams over his own fears and concerns.

And OH, this baby!  I have said it before, but it bears repeating:

This is the way the universe balances itself: I have a child who cannot eat by mouth, I am given a child who puts everything in his mouth. I have a child who cannot use her hands, I am given a child who grabs at everything all the time, even in his sleep. I have a child who has no torso control, I am given a child who sits at 4 months. I have a child who never cries, I am given a child who spent the first two months of his life doing nothing but crying. Anabelle brought many blessings to our lives, but God saw the things that my heart was missing, the things that lead us to the decision to have Wes, and we were gifted them in abundance

I loved all my children as babies, but I can't say that I ever reveled in my girls the way that I do in this child.  Everything he does is a miracle.  This was Anabelle's gift to me.  Nothing, absolutely nothing, that he does is taken for granted by me.  Every detail is illuminated in a way that I just didn't see with Elyse.  And to see my girls interact with him is a priceless gift.   He is the period on the end of the sentence that is our family.

So there it is.  The most beautiful love letter my husband never wrote.  Personified in a gorgeous golden boy who radiates light through our entire home.  The child who may never have been if our path had been different.  Thank you, Baby.  Thank you for my son.  Thank you for all my babies and for the incredible partner you are in raising them.  When I spoke our marriage vows, this is not remotely the "good times and in bad" I would ever have envisioned, but I guess I wasn't creative enough to envision all I could have.

Wednesday, October 1, 2014


Every year, the yellow spreads a little further.  Below are the pictures from Microcephaly Awareness Day 2014 in which I was tagged on social media.  There were 121.  And I know my micro friends had many more from their friends and family.  I only share the ones in which I was tagged, I do not presume further than that :).

We cannot express what this outpouring of support means for our stamina and morale as special needs families.  Thank you, everyone, for another great year!