I often say that Boo is not found anywhere in What to Expect. Nothing against that book, in particular, but it doesn’t really prepare you for parenting in the world of special needs. Now almost 4 years later I figure there are definitely three types of books needed

1. For parent who receive just what they were expecting: a happy, healthy baby
2. For parents who know they are going to have a special child
3. For those of us who rouse the minute after giving birth and discover that they are in no way prepared for this unhealthy, unhappy baby

All of us love the child, regardless of which category they might fall into. However, for moms like me who were expecting child number 1 and got child number 3 a little advance notice might have been helpful.

Here is a not-so-short-list of things I would tell a new mom who just learned her life would never, ever, forever, not be What She Expected:

• The NICU nurses are awesome. They will tell you to take a walk, to sleep and let you hold your baby. It’s okay to cry around them, because they understand when they are not taking care of your little one they are taking care of you.
• The Doctors don’t know everything. Sure, they try to be all powerful. But the amount of science out there, combined with the limited about of understanding, leave a lot of room for improvement. So go with your gut. In the end you do not have to like the doctor, but you have to respect them. So if you do not, find a new one. They are not all the same and they are all replaceable. You are not.
• Yes, eventually you will brush your teeth. Just not today.
• Therapy begins as soon as you are able to put two words together. Do not listen to those who say they are just ‘behind’. Go with your instincts. If you think your child should be rolling over, call Early Intervention. Do not wait for your pediatrician to be on board. Demand it. Honestly, they probably want you to start therapy but are afraid of hurting your feelings. I had one doctor tell me that most parents “aren’t ready to hear” that their child is delayed. So they wait for us to tell them.
• Yes, it is possible for a child in their first year of their life to meet more doctors in one day than you have in your entire life. In fact, they may meet more doctors, nurses and technicians than the number of people at your Town Hall Meeting.
• No your arms will never tire of holding and carrying your baby so she doesn’t throw up. But the Snuggly is a fabulous invention. If you do not have one, beg for one. Then ask some one to teach you how to put it on without throwing out your neck or (yes, I speak from experience). Added bonus of the Snuggly, you get to brush your teeth.
• You thought you became a parent, but in fact you became an advocate. 
• Find your “safe person” and create your village. You will need to have some one to be strong once in a while when you need to crack.
• And if you can, find another mom who has been in the trenches longer than you. Learn from her and then pass that knowledge on to the mom that comes after you.
• You will become SUPERMOM. Defender of the innocent, advocate of the needy and the most loved person in the world.
• This is still the best thing that will ever happen to you. After all, the most treasured memories are the hardest to come by.
• You love this child, and it will all be okay. 
• Cracking is okay. It will make you stronger in the long run and show you what you can handle.
• You will be okay. I promise. Your life has changed, and this is not the child you planned. And that’s okay. You probably weren’t the parent they were expecting either.
• Your child’s milestones will not be found in any book. But you will more accurately remember them. So when you are sad that your little wonder isn’t walking yet, remember how excited you were that they didn’t have to see a specialist that week.
• Perfection just has a better definition now.

That is what I would tell a brand new parent in the NICU.

I am filing this one under another important piece of information that is left out of the parenting manual that no one gives you. Last night Allie left a note for her Elf, Max. I am unsure if you were told about the Elf on the Shelf (it was left out of my manual). But Santa sent Allie’s when she entered first grade. I thought for sure she would say, hey this is a doll.

Not my Allie. Not the true believer. This year she started leaving notes! Now not only do I have to remember to re-hide the little red bundle of joy, I have to write back! In a handwriting that is not my own. Last night, this is the note she left:

Why does Santa say I have to work harder? Does Alex like me? Do you want a dog or a cat? I got to see a whale show. what is your favorite game to play? Is there dogs at the work shop? Do you ride reindeer? Go up stairs and take a left if your at the a door go the other way. Go straight if you see a cottage go in it me and Emma decorated it for you! Do you know Benjamin Button?

I wanted to write, Well Santa says you have to work harder because you were an absolute bear to your father this morning! And to tell her that at 9 years old she shouldn’t like boys. Instead, I sent a plea on Facebook to find out which of her friends had a Benjamin so I could be a good Elf and write a proper response. (How much do you want to bet it’s “THAT” boy’s elf?), I wrote in my left hand for about a minute and then figured if she cannot figure out that this doll isn’t really going to the North Pole every night then I am going to take a chance she won’t recognize my handwriting.

I am sending very un-Christmas like vibes to whomever invented this torture.

For the past couple of years, I have become depressed at Boo’s birthday and Christmas. Which is kind of depressing in itself when you think she is only four years old! I just have never looked forward to the ‘events’ because, through no fault of their own, friends and family have given inappropriate gifts.

Oh, they haven’t meant any harm. But people buy gifts that are chronologically-aged appropriate. Not where she is developmentally. So after every event, I would be down. It got to be that I wasn’t looking forward to this year at all. Instead of wallowing (okay, I wallowed for a moment or two) I decided to be proactive.

I e-mailed any family member or friend that I knew would be giving Boo a gift. I sent a list of links and explained how the item would be useful. I included the price and a disclaimer that I knew this wish list was pricey, but since Boo’s birthday and Christmas were so close together they would only have to buy one gift. Added bonus, they could collaborate on the gift. Either through gift cards or with one another.

I was honest. For example, I explained that the trampoline was not for play (well, not really) but for muscle tone, sensory and learning to jump. That I was not looking for some one to buy ‘me’ a chair, but a better chair for Boo to reach the table. She is too “old” for a booster seat. I want her to be a part of the table. This chair will help her with stability, etc…

And it worked. For Boo’s birthday she got things she could use. Things that made a direct impact on her life. The trampoline? Within 8 days she was jumping! A year of therapy and all it took was having the tool available.

So, yes I felt incredibly guilty sending the e-mail. Like I was asking people to spend money on Boo. But in the end it worked.

What works for you? How do you get your friends and family to contribute to meaningful gifts, rather those you have to donate to another child?

Five ways I escape….

I take the long way home from work.

Any of the Real Housewives shows.

Offering to walk the crazy puppy.

Girls night in.

PTA meetings (sad but true).