Monthly Archives: June 2012

Mr. Mom for a week

My husband is exhausted and he was on vacation this week! Since he was home, I got to work like a normal employee. I didn’t have to leave early for therapy appointments or rearrange my schedule to cover our girls summer vacation. So, he was Mr. Mom. He got the kids up and ready for the day (including hair!), made breakfast and lunch, took Boo to all of her appointments and sometimes remembered to do the dishes.
My house is a mess! 
The girl’s outfits are hopeless mismatched!
We are out of snacks!
We are out of clean clothes!
Did I mention the house was a mess?
But, they have had the time of their lives without ever leaving the backyard. 
I wish I could take a stay-cation and not worry about the house being a mess, groceries in the cabinet, clean underwear. But I know myself, and that is impossible. However, I admire my husband.
He is able to stop and focus on the girl’s playtime rather than therapy time.
And, after this week, I think he admires me. He usually doesn’t do the running around. Oh, he helps with Boo’s therapies. But he usually just attends he appointments. He doesn’t have to keep the family schedule in his head, the grocery list, pick up the prescriptions and generally keep the house running smoothly. By (kind of) checking out this week and leaving him to his devices, he got to see how much of a partnership we have.
He is exhausted, the girls are mismatched, the house is a mess but everyone had a great week. And that is really, at the end of the week, all that matters.
Now I really have to go do laundry and clean the house!

The family really wants to go camping. Me? I love camping. Or I used to. Now I am kind of overwhelmed by all it involves. Last year at this time Boo was using a pediatric walker and pretty easily contained. She couldn’t get far! Now not only is she walking independently, she is climbing, almost running and really trying hard to jump.

We tend to rustic camp. After Allie was born we broke down and purchased a small trailer/camper.  We tried tent camping with Allie and failed miserably. We just could not get her to sleep. And everyone knows that a cranky toddler makes for a cranky mom! So that we could continue doing what we love, we traded the tent for the camper. Now I am spoiled and will never go back. But even with the camper we stay at places without electricity/water so that we can get back to basics and reconnect.

This was great for 5 years, and then Boo entered our lives. Granted her first year camping was out of the question. In her second year she started turning blue when chilled (still undiagnosed for that too! Although her docs think it might be the youngest case of Reynard’s) so we limited our camping to one trip. Last year we went camping a couple of times. It was more difficult, but because Boo wasn’t too mobile it had its pros and cons. Since she had an aversion to dirt she was pretty content to be held. Because she had an aversion to dirt and wouldn’t crawl on the ground, I built up some pretty strong arm muscles.

So this is the year. The first year we will camp with the mobile Boo, who we cannot trust in the yard or open door because if you blink she will be down the road. The first year we will camp with the Boo who is no longer afraid of sand, dirt, water.

Makes me wonder what I started with all this therapy.  Is it awful to think that she was actually easier to travel with when she was less mobile and had aversions to every sensory input?

Have you tried camping with your unique child? I would love to hear suggestions for keeping her safe while enjoying the great outdoors.

“There is nothing wrong with Boo. She just has a funny pattern in her brain”—Allie

I overheard this at Allie’s end of year school activities. Boo was not so impressed with the 2nd grade presentation. She didn’t understand why Allie couldn’t sit with us. And when Allie was on stage Boo kept calling “ALLIE”! After the presentation I heard one of Allie’s classmates ask what is wrong with her sister. Allie’s response, “There is nothing wrong with Boo. She just has a funny pattern in her brain” made me smile. To her, there is absolutely nothing wrong with Boo. And in her 8 year-old way, she has figured out how to explain Boo to her friends.

Since Boo is so petite, she is frequently thought to be about a year or two old. This is where she is developmentally so we usually do not have to get into the specifics until people ask how old she is. It is when you see Boo with her age-appropriate peers that you notice her difficulties.  

We have been extremely lucky. Allie has always taken Boo in stride.  Boo is just starting to verbalize, and Allie was her very first word. They have had this uncommon bond since the moment of Boo’s birth. During the first year when it seemed all Boo could do was scream Allie was the one person who could calm her. Three years later, Allie still has more patience than I do. Allowing Boo to interfere with her activities, she just accepts Boo for who she is: Boo.

I sometimes worry that all the attention Boo needs adversely affects Allie. Then I hear Allie teach her classmates about Boo and my heart gets a little lighter.

Everyone should have a big sister Allie looking out for them.

Today I heard a talk radio program discussing could you really have it all? They were focusing on if a man or woman who worked outside the home could they really give each portion of their lives (home, work, play) 100%.
Personally, I think this is a ridiculous question. If I am getting 100% fulfillment (or giving 100% dedication) to my job, why would I need any satisfaction from my home/family/marriage? If everyone is trying to get and give 100% from every area of their life is at wonder why we are all so exhausted? They didn’t even touch on the subject of parents with special children.

Take today , for example. School is out, so today meant ‘balancing’ work, kids home from school, Boo’s therapy appointments (only one today thank goodness), and then some one had to cook dinner! Is it any wonder that those of us who have unique children might feel more stress in the balancing act?

I think it may be more important to ask, instead of do you have it all ask do you give it all? Let’s face it, there is no way to have it all. But we can give our all to each endeavor. When I am at work I give 100%, when I am at therapy with Boo I give 100%, when I am home with the girls I give 100%.

This is probably why now that the girls are asleep and the husband is at the station, I will only give the crazy puppy 10% of my attention and the rest I will give to my glass of wine!

How we started

Undiagnosed, but that’s okay.

Okay, I am doing it. Today, I am going to start a blog. Why you ask? Does the world really need another blog? Probably not, but hey why should that stop me?

What will this blog be about? It will be our outlook on living life without a diagnosis. I have a great husband, an 8YO daughter who is the world’s first perfect big sister, Boo our fabulous 3YO daughter who has faced and overcome more in her short life than I ever have in mine and a crazy foolish puppy.

Boo was born after a perfectly normal pregnancy. She then spent the next week of her life in the NICU and then had subsequent admissions over the next 3 years. In the interim she acquired 14 pediatric specialists, a feeding specialist, early intervention, physical therapists, speech therapists, augmented speech therapist, occupational therapists and the perfect big sister.

The one thing Boo has not acquired is an official diagnosis. Oh, the doctors all agree she has an unknown genetic abnormality which may have led to her global developmental delay, reflux, laryngomalacia, tethered spinal cord, ‘trivial’ PVD and dysmorphic features. However with all their degrees combined, not one specialist has been able to able to tell us what is ‘wrong’ with our child and what it means for her future.

So this blog will be about how Boo, her perfect sister, crazy puppy and loving parents navigate life without a diagnosis. I hope you enjoy the journey!