A letter to new "special" moms

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.