But there is a BIG day coming up...Meg’s 8th birthday. She loves her birthday. Actually she loves ANY birthday or ANY reason to have a party that includes cake and ice cream. She loves having people together and, I know you will find this hard to believe, she usually loves to be the center of attention. She talks about her birthday year round, so I have to be sure that when the actual date arrives, I don’t let her down. I am working on putting her party together (Theme - Princesses and Pancakes) and reminiscing on the past 8 years on this journey as Meg’s mom.
In some ways I hardly recognize the person I was before Meg.… the person who walked in to the hospital 8 years ago not knowing anything about the child I was going to have. I am one of the dying breed who refuses to know the gender before the delivery. Little did I know the gender was not the biggest surprise in store for us that day.
Here is how July 5, 2006 went…
6:30 am - Settle in room
Pitocin started
The Cosby Show
Contractions
Sudoku
Labor
Issues with baby’s heart rate
Lay in strange positions to help with heart rate
I say "Meds now?"
I exclaim "What do you mean it is now too late for meds!?!"
Pushing
Crying
Pushing
Baby crying
2:20 p.m - “It’s a girl”
Crying
Not pinking up, looking dusky
New Dr’s in the room
Looking better
First holds and cuddles
She’s perfect
Baby to nursery for check up and clean up
Called family
“great news”
I got settled in new room
Celebration
Resident knocks
“Good news” he says “baby does not have heart condition!”
We celebrate
“You really dodged a bullet” he continues “most children with Down Syndrome have a heart condition. You are lucky!”
“You really dodged a bullet” he continues “most children with Down Syndrome have a heart condition. You are lucky!”
Silence
World stops spinning
Silence
“Down Syndrome?!?”
Silence
Questioning
Crying
Resident freezes “yes…. I, um…. You didn’t know. I am so sorry. I will get my boss”
Resident backs out of the room.
Life as I know it ends.
New life begins
So as I think about that person who was adjusting to this news I wish I could go back and tell her some things. I wish I could give her a glimpse of what is to come. I’ve been thinking about these lessons and realize at many times of my life they would have been helpful. So maybe if I write them now they will be LIFE CHANGING to the person I will be in 10 minutes when I am done writing!! I can hope, right?!
Things I would say:
“Congratulations” You’ve dreamt of a daughter and now you have one!
“Hey Anne, Get over yourself” – True Confession - one of my biggest regrets in life is that there was a moment when I did not want to be Meg’s mom. When, after the news of her diagnosis, I had the very real thoughts of “I don’t want to do this” and “This wasn’t suppose to happen to me”. Well Anne if not you, then who in the hell WAS it suppose to happen to?!?! Life is messy, heartbreaking and hard and beautiful, easy and rewarding. You’re not entitled. You don’t get to pick only the “good” from that menu. You signed up to be a mom. Chances are, while you are mourning the loss of the “perfect” child you dreamed of… she is mourning the loss of the “perfect” mother she expected. Look at that! Neither of you is “perfect”! You are a match made in heaven… now quit your ugly crying and embrace this journey together.
“Grasp every hand that is reaching out to you” – I know this will be tough for you. For many years you have lived with the persona that you have your shit together. You’ve worn that “I’ve got this” image as a badge of honor. Well you don’t got this, sister. The gig is up. You’re in over your head with this right now and the sooner you can accept that, the sooner you will start to build a network of friends and resources that will sometimes overwhelm you. You have NO IDEA the incredible relationships coming your way. Some will be current friendships that will deepen and some will enter your life soon. Let go of your pride and practice two very important phrases “Help me” and “Thank You”. You will be lucky to learn a great deal of humility on this journey.
“Let go of the hands that are pulling you down” – While some wonderful people will come in to your life, you will also be disappointed in some who walk away. Not everyone will stay with you on this. Don’t spend your time chasing them. Their inability to embrace you and the new makeup of your family is a reflection on their limitations. And let’s face it… some people are just jerks and the cure for “stupid” has yet to be discovered. Try not to take it personally and with the ever rising cost of stamps be grateful for one less Christmas card to send.
“People will take their cues from you” – If you define Meg by her diagnosis, others will too. If you love and accept all the children you’ve been blessed with, then most people will as well. If people see you are just raising kids and doing the “normal” family things – going to church, going to school, living in your community – then they will come to see Meg’s involvement as “normal” as well. But if it is always “hard” for you, if it is all a “production” then people will be scared of including Meg because they will think it is a burden and requires a lot of effort.
“Learn when it is appropriate to not apologize” – This is tricky, as a former catholic you are very good at saying “I am sorry” dozens of times a day. Apologize when needed but do not ever feel as though you have to always apologize for your child and/or your decisions. When you have a child with additional needs you will have different things to consider in your everyday life. While your choices shouldn’t dictate what others do, you also should not feel bad when the health and safety of your child/family dictate what you need to do. Make decisions that are best for you, Todd and the kids. Those who matter will understand, those who don’t… see the paragraph above. But do not apologize or feel guilty for having to make decisions that are right for you but not with the “majority”.
“Take care of yourself” – Here is the deal – you have a child who is going to need you for a very long time. The only way you can take care of that child is if you take care of yourself along the way. 30 minutes a day a few times a week can tack on years… dust off your gym shoes and step away from the fritos.
“Move on” – People make mistakes, they are human. You have enough to do and focus on without the added stress of grudges and hate. This means it is okay to keep your guard up and some distance with those who have proved to be pulling you down. What you don’t want to do is relive the past and continue to mentally rehash the same conversations over and over – even if each time you come up with another perfect one liner that leaves that jackhole speechless and fumbling for the apology you certainly deserved! You don’t have to wish them well, just find the balance between wishing them well and wishing them dead. I’d quote a popular Frozen title here, but don’t want you to get that song stuck in your head all day.
“Relax” - A good friend once told me that “Problems” are life and death. Everything else is just an inconvieience. Good perspective. Remember that.
Love.
Forgive.
Get mad.
Dream.
Hug.
Work hard.
Cry.
Laugh.
Praise.
Pray.
Believe in yourself.
Love, love, love!!! Best post yet :-)
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