Tuesday, May 24, 2016

So Many Eggs for My Precious Basket

I haven't been talking much lately.  When most people ask me how things are, I say fine and change the subject.  In truth, it is the old expression, "The deeper the pain the tighter the lips."  Our son, Wesley, has autism.  At only 20 months, the signs were too apparent to ignore.  The reality that we now have TWO children with (vastly different) special needs is so enormously crushing that there are no words.  And so I've said nothing.



The "stages of grief" as outlined by psychologists: Denial and Isolation, Anger, Bargaining, Depression and Acceptance, are not necessarily sequential.  They ebb and flow on a daily (or hourly) basis.  Well, except acceptance.  Because, honestly, I think acceptance is pretty much bullshit.  I don't think you ever fully accept a deep loss.  Denial I am past, because I am a logical person and cannot discount what is right before me, but the desire for isolation is almost constant.  I have to really push myself to interact with those around me so I don't alienate relationships I have worked so hard to build.  Anger: constantly flaring up (another reason I am wary of being around others).  How is this possible?  How did my relatively healthy body create TWO children with obstacles.  And, I should add to this: embarrassment.  I am embarrassed that I could not create healthy children.  I am embarrassed that I chose to have a third child and was so sure I wouldn't be given ANOTHER child with issues.  I feel like we are being judged for selfish choices.  And depression.  So much depression.  Depression I have tried to treat with medication and therapy.  The therapist just kept saying to me, "Wow, I would be overwhelmed too, I don't know how you do it."  So I stopped paying Captain Obvious.  The medication mostly keeps me from just going over the edge.

The daily routine of providing what these two children need is brutal.  Between the two kids, I now have therapists in my house 13 times a week.  I have nurses in my house 16 hours a day.  There are currently only 6 1/2 hours a day when my family is alone in our own house.  It makes it so hard to connect as a family.  My husband and I need to have most serious discussions, and yes, even arguments, by text so we aren't overheard.  We are rarely in the same room at the same time, even at night, because he stays up until Anabelle's night nurse arrives at midnight, and I go to bed early because Wesley is up multiple times every night and early in the morning.  Neither of these children can talk, and we are constantly having to guess what they need and what is bothering them.  With Wes, this is accompanied by dozens of tantrums every day as he is frustrated when we do not understand or will not comply.  I once read that a study showed that the parents of children with autism tested with the same levels of stress as a soldier in an active combat zone.  We, as parents, are constantly under fire, dodging bullets and putting out flames.

But I want to get to the real point of this post.  We also have a typical daughter who we are trying to give a beautiful childhood and raise to be a happy, well-adjusted adult.  And, God, I feel like we are failing so badly.  The worst pain in all of this is that I cannot be the parent I want to be to the only kid who can really understand what that means.  She is the one getting short-changed.  She is the one who spends time with Mom or Dad, but never both.  She is the one who never gets to go on vacation, who is told "wait a minute" 60 times a day, who feels like she can't even have an outburst in her own home on a bad day without being embarrassed that a nurse or therapist will hear her.  We had Anabelle to give her a sibling.  Anabelle has brought many things to her life, but companionship is not one of them.  So we took the leap and tried again, to give Elyse a typical sibling relationship, so that someone would understand what it meant to grow up with a sister like Anabelle, and so that, if it should come to it, the burden of Anabelle's care didn't fall solely on her.  Instead, we just made things harder.  We guaranteed that she will have a sibling, if not two, that she needs to feel responsible for.  We also proved that something is not right in the genes she inherited.  How can I encourage her to have a family of her own, knowing what it means when something goes wrong??  I'm sure some of you are reading this right now saying, "Look, she hates her kids, she wishes they weren't born."  I cannot change your judgment,  Unless you have a special needs child of your own, you cannot possibly understand what it means to love a child with everything you have, but hate what their condition has done to them and your family.  And I'm not going to say any more about that.

When my oldest daughter was born, I had so many dreams about how her childhood would be.  So many things I wanted to share with her.  So many places I wanted to take her.  So many experiences I wanted to give her.  But the reality is that I barely get any time with her.  She gets home from school at 4:00.  Wes has therapy until 5:30, then I make dinner, then baths and then I am putting Anabelle and Wes to bed.  By the time Wes is asleep, it is time for Elyse to go to bed.  I hate this.  I miss my daughter.  I am terrified that we will never be close because she has learned I am someone who is not available to her.  And I am terrified that I am dedicating all of my time to Wes's therapies when it may end up he isn't capable of responding to them, and then I lost everything with Elyse for nothing.

Maybe all parents feel like failures.  Maybe three typical kids have parents running in all directions, with no one fully getting the attention they intended.  I don't know, I only know the life I am living, in which all my eggs are in one precious basket, and I am terrified the bottom is going to drop out from lack of support.  Everything we are struggling through to give our special needs children the best life possible will mean nothing if we fail the typical one.

Sunday, December 27, 2015

"I Wouldn't Want Her Any Other Way"

There is no greater pain a person can endure than watching their child suffer and struggle every day and know that they will continue to suffer and struggle all the days of their life.  There are ways in which having a special needs child have made me a better person, but none of them are worth what she goes through on a daily basis, and to say I wouldn't have her any other way would be the height of selfishness.

They say it takes a special parent to raise a special needs child, but I don't feel special.  Special is the people I know who knowingly took on a special needs kid: foster parents, adoptive parents, step parents.  I parent the kid I was given because she is mine, I would never have willingly taken on this role.  Not only do I not feel special, most of the time I feel wholly and woefully inadequate.

I love my daughter, but 5 years into the special needs life and I am becoming so jaded.  The sleep deprivation, the isolation, the constant financial struggles, having to watch my other kids go without: it just compounds and compounds.

I have been sitting on saying this for awhile, because I know that at one time or another, many of you have looked to me for support and hope.  I'm so sorry I can't keep delivering hope.  I can only deliver truth.  I have tried to accept my lot with grace and live in such a way as to be an inspiration to my children, but reality is that my special needs child suffers every day and then will die, I am physically and emotionally exhausted, my body is aging at a rapid rate that I cannot stem, many of my relationships have suffered, I see experiences rushing by me that I cannot grasp because of my obligations, and every day I see the ill effects this life has on my oldest daughter and I fear so much for her future.

So, yes, you want the truth?  I DO want my daughter another way.  I want her in a body that doesn't fight her and with a mind that helps her form and reach her dreams. I want a sister for my other children who plays and fights and collaborates and challenges.  None of the positives brought to everyone she touches are worth what she has to endure and I would trade every single one of them to give her the opportunity to lead a typical life and make her own mistakes and achieve her own successes.

I do not speak for all special needs parents. Many of them have accepted this life more gracefully than I have.  Many of them really wouldn't change the experience they have had with their child and feel blessed by it.  I can only speak for myself, and that is not the way I can see it.  And I guess that's all I really have to say.

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

Love,

Mommy




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

Gratitude

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!