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