Lately life has been tough. The holidays, birthdays, just general Boo-ness. But my child is home. She is safe and sound.

My thoughts and prayers are with the parents and family members who are all suffering today.


Have you heard of Story People? They seem to have great sayings for every moment in life. Even tragic ones. Tia found this one today:

http://www.storypeople.com

Just as those without “special” children cannot possibly know what we go through, we can only imagine what the parents, friends and families are feeling at this moment. And be eternally in awe of their strength.

We can also hug our children and be grateful. Grateful that at this moment we have more joy in our lives than we can ever appreciate.

Recently I was asked: Why isn’t Boo potty-trained yet? She is 3 & 1/2

I wanted to reply: Because I like supporting Pampers. They seem like a nice company. (this was during the weekend that I became an idiot).

But the truth is, I just don’t think she is ready. She cannot tell me if she is hungry, tired, bored or why she is throwing the baby doll out of the baby carriage. She cannot help with getting her pants on or off and she could in no way get herself onto the toliet.

Then I second guess myself and think that in some ways I think she might be ready. 

The other night she took my hand, said potty and walked into the bathroom. I put her on the toilet and she sat for a minute. She told me she was all done and got off. Nothing moved, so to speak. But I was so proud of her for sitting there for a minute.

Over the weekend we got together with some friends and one of the moms said to me, “Oh Boo isn’t trained either? Now I don’t feel so bad about K”. Okay, first I was thinking wow you are holding up your ‘normal’ almost 3 year old to Boo’s 4 year old standards–yeah Boo! But at that exact moment her daughter came up to the mom with diaper bag in hand and proclaimed “I NEED CHANGING!”. So, my second thought was, wow your daughter can tell you she needs changing but you don’t think she is ready for the potty?

My third thought, you jerk-Kerri-here you are judging another mother when you are so irked that others judge you/Boo. (Yes, I frequently yell at myself and call myself names).

It also made me question, again, how to train Boo. With Allie I had a deadline. Her daycare only went to an age and she HAD TO BE TRAINED by 2.9 years for the new preschool. I started early, totally improvised and remember to this day me thinking to myself that there is no way to teach some one how to use the toliet. I mean think about it. How do you describe what they are supposed to feel in order to get them to the toliet in time. With Allie I literally put the big girl panties on and she peed the floor. I remember saying to her, see what happened? If you think it is going to happen again run to the bathroom! And if you do that, I will give you 3 M&M’s (yes, 3!).

It was a long process, to say the least. And we went through a lot of M&M’s.

But how to train Boo? I am completely unprepared. I have no idea where to start. She has such trouble communicating, she cannot self-dress, she cannot manuever easily into a chair (even if I got a portable one). And do not even get me started on her constipation/diarrhea issues.

I do not want to set her up for failure. I also do not want to be lazy. As much as I enjoy supporting Pampers and Baby wipes, they do make life easier. Her GI doctor told me that due to her low muscle tone, potty training really wasn’t recommended yet. Developmental medicine told me that realistically she wasn’t capable of knowing when to go.

That has been my excuse, really. That I do not think Boo is ready.

But then she took my hand and went into the bathroom.

Boo has proven doctors wrong before. Maybe she is ready, I at least have to let her try.

Just not tonight because I have to make cookies….
 

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).

Last week before we left for Disney, I was in a panic. Boo elopes, she has gone missing for short (thank God, SHORT) amount of times. If we are in the backyard and blink, she is in the front. She managed to escape a therapy session, school and her bedroom. We have been so lucky that we (or some one) has been able to chase her. 

But the fear never stops. 

When we left for Disney I made up a little sign and used packing tape to laminate it. It went something like, “My name is Boo. I am severely developmentally delayed. I cannot tell you my name or age. If you are reading this, my mom is freaking out. Please call Kerri at XXX”. 

When we got back, I noticed a friend on Facebook was using a Nike product combined with her IPHONE to track her running. I thought, YES This is what we need! Since Boo will not wear a bracelet or necklace and I am at my wits end trying to keep a ponytail in her hair, I thought something in her shoe? That would be perfect.

Unless of course, she threw it in a fire or out of the jeep. Then that would be a very expensive OOPS. But, if it would work for her or in my moment of philanthropy any child/adult who if they go missing would not be able to help themselves, it is worth the risk. We just would keep our promise of never letting Boo wear shoes in the jeep!

So, I wrote NIKE. I got a response which is slightly better than the no reply that FOX News, the Boston Globe or my local newspaper provided when I wrote to Ann Coulter. But still, the reply made me laugh:

I appreciate you writing us with your idea of having a GPS tracker in Children’s shoes. Your idea is wonderful.

At this time, Nike is unable to accept outside ideas. This is primarily due to the problems in adapting those ideas to fit our objective, but also because of the ownership issues, which could be raised if we happened to be working on a similar idea at the same time. Consequently, it is our policy not to share outside ideas and not to use those ideas in any way.

Thank you for your interest in Nike and I hope you have a wonderful day.

Well, at least they hope I have a nice day. And that my idea is wonderful. But really, they cannot accept outside ideas? I know there is probably some legal reason why they have to respond this way. So, Nike just do it, make a product that will keep our kids safe.

I promise you,it will be much more rewarding than making athletes faster.
 

Boo turned four today. I am amazed how the time has gone. I find it is kind of funny that her milestones are recorded in her medical record. I never really have to wonder when she first sat up, I find it in some EI report or doctor report. This makes filling out the start-of-the-school year forms MUCH easier to fill out.

I am impressed that the mom who wore gloves to change Allie’s diaper (yep, me) now looks at a hazmat and thinks to herself, well Boo is no longer constipated. I can now deal with vomit, drool, heck any type of body fluid with out embarrassment. Heck, I recently changed Boo’s diaper on a bench in the Animal Kingdom. I swear the area was private right before I took the diaper off and around the corner came about 50 other sightseers!

I am still astounded that Boo’s first word was “Allie”. She might still call every woman (and sometimes her father) ‘ma’ but “Allie” is reserved for her favorite person. I love that I know by the tone of her voice when ‘ma’ means “Mommy”. I crack up that a child that has never lived in the city has a Boston accent. I think it is all the times spent at Children’s!  

I am thankful for the doctors, nurses, therapists and teachers that have made Boo all that she can be. Which frankly, was more than any of us could hope. Although, I do think the doctors should send me a thank you note for providing for their child’s private school education! Especially the one who told me spinal surgery was a ‘piece of cake’.

I am so in love with this girl. When I had Allie I was one and done. I never thought I would have the love, the time or the patience to love another child. I am still in disbelief that I do. I think back to those first days in the NICU, when I never imagined that this child who I barely knew would live. When in a moment of sleep deprivation and worry I actually forgot her name for one (I swear, brief) moment. 

I never imagined she would deepen our hearts and strengthen our family. She also strengthened our friendships, new and old. Some friends became acquaintances, true friends became family members. True, faithful friends became our support system.  

Four years ago, I never dreamt that she would have a friend. One with DS who would use the sign for “B” to call her friend, Boo. That this girl’s family would tell me that “J” would use the sign all weekend long. The “B” sign no longer stands for anything other than Boo. That this mom and I would be in awe of our daughters. Two girls with completely different diagnoses would meet and become friends. 

Or that a little boy “E” in Boo’s integrated class, one who it the peer child with a bad-ass attitude, would take Boo under his wing. He sits next to her during snack and helps her. He makes sure that she gets her turn on the slide at recess. Boo has turned this trouble-maker into a hear throb. His mom told me the other day that when we were on vacation, he went into class kicking and screaming.

She and “J”‘s mom asked me not to go on vacation again, without forewarning them.

 Truthfully, I wouldn’t change a thing. Not the 14+ doctors, not the amount of time spent at doctors offices (although I do kind of wish I could change the commute!), not the time spent in therapy. If I had one wish, would I wish that she was perfect? Well, to me, she is already perfect. So if I could make a wish on the birthday cake (that she refused to eat), the wish would be to know her diagnosis, so I could understand her prognosis.

Happy Birthday, my Boo. I love you more than words can say.

And so does everyone who meets you. 

That Allie will no longer be in love with Boo. Right now Allie is Boo’s strongest advocate. How do I prevent Boo becoming a burden and not a joy?
 
That I will not be strong or patient enough to be the mom my girls deserve.

That my marriage won’t continue to be strong. It’s already been stressed with longevity and Boo. Did you know that parents of special needs children have a divorce rate of twice those without?

That work will not continue to be understanding about my flexible hours. Especially this week, when my husband is away and I play single mom.


That Boo will never say “I love you”