Don't steal my idea now....

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.
 

Time just flies....

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. 

Monday Confessions V9

Monday confessions....five things I fear

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"

 

Recovering from vacation....

One of the reasons I am always so hesitant about going away, other than the safety factors when it comes to Boo, is coming home. Now to be honest, I love being home. In my bed. Alone. Did I say that clearly....ALONE as in no child in a 10 foot radius. As in no child's foot (finger, toe, hand, nose,hair) in my nose, back or any other place they manage to get comfortable. It even helps when we come home and my husband is immediately on duty. Not that I don't love when he is home...but eight days of togetherness with one or both of our children sharing our bed and each one of us is left with an inch of mattress real estate?

Amazing, how one little girl can take up so much real estate.

Being alone in a closed room...that is dream come true my friends.

Does this dream come true? Well, not so much with Boo. It takes at least 4 nights of "cry it out" boot camp before she realizes that I am not her cuddle buddy. When we got home she was sick, so we warred with do we let her sleep with us where we can make sure she isn't aspirating or do we decide to initiate project back to sleep without interrupting mine.

Safety won. I slept in her room on the guest bed. Husband got the cherished night alone. Without a child coughing on them, kicking them, drooling on them, having a foot (finger, toe, hand, etc...) shoved up their anywhere. 

But last night? Last night I was determined. Determined, I tell you to sleep. ALONE. 

It did not start off well. She cried for me, for Allie. Telling us she was all done 'night night'. She started coughing. I was afraid she was choking, but erred on the side if she was crying she was breathing. I listened very carefully to make sure she wasn't vomiting. I sat firm. On the other side of the door.

87 minutes later. Quiet. (by the way, what is UP with the professionals that tell you that a child will cry themselves to sleep after 10 minutes? I want them to meet Boo!). By 8:30 both girls were in bed. I had a nice glass of wine and a quiet rest was had by all!

Thanks...

Thank you to,

All those who hold me up when I fall down.

All those who look at Boo and see the miracle that she is.

All the doctors, nurses and everyone at Children's Hospital. It is thanks to you that my child is home and healthy.

Thank you for (put whomever you pray to here),

Allowing me this place to vent, to cry, to rejoice and learn.

Giving me insight and innovations.

Giving Boo the best big sister possible.

Giving Allie the best little sister she could ask for.

Giving me the strength to advocate when needed.

Giving me the patience when I think I have none left.

Giving me the knowledge to know when I do not know enough.

Knowing that I never would have thought I would be a good enough parent to a child like Allie let alone Boo. 

Thank you for proving me wrong.
 

 

The (truly) Happiest Place on Earth

Last week we took the girls to Disney. I did not want to go. That is not an understatement. My parents guilted me into it. They wanted to take Allie back before she lost the magic. I didn't want to take Boo and also didn't want Allie going without me, so I caved.

And I am so glad that your mother is always right! The girls had such a nice time. Boo did awesome on the plane. Allie as so excited, which I expected. What I did not expect was the courtesy of the Disney staff. They allowed us to use our stroller in line, gave her front row seating so she could see the shows and most of all? The characters were so kind and friendly. 

Allie is in love with all things Princess and Fairies. I was worried about Boo. How would she react? Should I bring her close or just let her hang in her stroller. However, the Princesses and Fairies wouldn't let me! They asked for me to wheel Boo over and were so kind. They welcomed Boo to touch their clothing, their hair, provided hugs and kisses. I was amazed. I thought for sure Boo would freak. But instead she looked at them and saw magic. 

We visited another theme park while we were in Florida and it just was not the same. They had little or no accommodations for the handicapped. Boo couldn't interact with with the animals like she could at Disney, the handicap seating was limited viewing. If I had not been to Disney I wouldn't have known. 

But now that I do, I will be saving for another trip. Because to see this look in my Boo's eyes is worth every penny we spent.