A Letter to Me (2-26-10)

I just read a blog post-- A Letter to Me Before the Birth of My Special Needs Baby.  After her letter, she asks- What would you say to yourself if you could go back to the day before your baby was born? Here's my answer:

Dear Me (February 26, 2010 at 8pm),

I know you are pretty uncomfortable and so ready for ‘Tres’ to enter the world.  You knocked off all the items on your ‘before the baby comes’ to-do list, including trading in the Mustang GT convertible for the more practical Fusion Hybrid that can fit 2 car seats plus an infant seat in the back--just today.  You’ve gone to fish fry and come home to lie in bed.  Tonight, ‘Tres’ is going to rock your world and he will continue almost every day from now on.  Consider this a warning you need to gird your loins! 

‘Tres’ will make his entrance so much faster than you planned, but thankfully the midwife will get there just in time for the delivery.  You and Darren will notice that this little baby looks a bit different than your other babies.  You will wonder if it is because of the quick birth.  Just ignore it, and soak in his newness.  Remember the realization that you had right after Alyssa was born—that this is the closest you will be to God before you die.  Just moments ago, Matthew was with God, and right now he is in your arms.  Soak it in.

In a few hours, you will be given what to this point is the greatest shock of your life.  When the pediatrician looks down at your son’s hands, know that they are absolutely perfect and Matthew will do amazing things with those 4 beautiful fingers.  Do not fret about his hands.

In just over 24 hours, you will realize that none of us are guaranteed a particular future.  It would be wise to write that down and read it every now and again.

In a few days, in the dark of the night in the NICU, you will find yourself in the deepest, darkest despair.  You will pray for God to take your son rather than subject him and all of you to a horrific life as you were described.  Tomorrow will be brighter as they will start running test that will give you hope for Matthew’s future and yours.  That night, and many since, you will fear that your life will never be the same.  You were right, it won’t, but not in the scary, horrible way that the doctor will paint for you.  Your life will never be the same, but it will be wonderful!

In a few weeks, you will hear a diagnosis that you have never heard before.  Don’t google it.  Step away from the computer. It is scary to be diagnosed with something so rare, but it is also freeing.  Matthew blazes his own way.  When you read too much even though I just warned you not to, remember he isn’t the little boy you read about with a similar diagnosis.

In the next year, you will be shocked time and time again.  You will be afraid that you will not get to see Matthew grow up, but what you don’t know right now is how strong and tenacious he is.  God gave him the perfect disposition for his challenges.  You will spend more time in doctors’ offices, therapy appointments, and time in the hospital than you ever imagined.  Just make sure to pack snacks for you and the big kids, be pushy when you need to pump, and always take a book with you.  You will grow to love Team Matthew.  As you are freaking out at all the things going on around you, you will lose your keys—a lot!  It will all be okay in the end. 

You will cry in the shower almost every day for Matthew’s first year, sometimes scared of what is to come and sometimes mourning the loss of the life you expected.  It’s okay to cry.  You will be less scared and mourn less and less as time goes on.  Though, once in a while, it will sneak up on you in unexpected places.   It will be much more infrequent.

I have good news!  You will worry if Matthew will smile and laugh.  He is most joyous!  You will worry if Matthew will walk.  He runs and rides a tricycle!  You will worry if he will talk.  Your heart will melt every time he says ‘mama’.  It all happens on Matthew time.  He will amaze you!

Even though you aren’t always as kind as you should be to one another in the stress and the chaos that has become your lives, your beloved will be your rock and you will fall even further in love with him.  He is your perfect partner and the greatest dad to Alyssa, Jackson, and Matthew.  Be better to him. Your fabulous friends and fantastic family will stand by you through it all.  Their love and support get you, Darren, Alyssa , Jackson, and Matthew through many hard days and nights.  Thank them often and remember you are blessed. 

Once you get on the other side, and you do get on the other side of that very rough time, you will be unbelievably thankful.  You will know you have witnessed a miracle, actually many, many miracles. Thanks be to God!

Sincerely,

Me (October 1, 2013)