The birth of the royal baby, yes I have to admit I was caught up in the action and hype for many reasons. Only, I have a feeling my reasons are only partly similar to the rest of the worlds.

The fantasy princess in me enjoys the fairytale of the commoner meeting a prince, falling in love, having a cinderella wedding, living in a castle, and having a baby. Life couldn't be more magical for Kate and I was completly absorbed by watching her live out every girls dream.

But when I heard they were not going to find out the sex of the baby I secretly panicked for them. I began to wonder if they knew what they were in for asking for a surprise at birth. I was thinking to myself, if the ultrasound tech doesnt look at gender, did they look at everything else closely enough? Were the cord vessels accounted for, was there a nasal bone detected, did the radiologist measure the nuchal thickness precisely, were the ears landmarked accordingly, was the heart chambers and function monitored thouroughly?

So many things are supposed to be detected via ultrasound but so often I think we get caught up in the routine of normalacy, assuming that all is well with the baby as long as he/she is growing and moving correctly.

I wondered what Kate was thinking throughout her pregnancy. Did she expect anything less than perfect? Was she ever scared that something might not go as planned? Did she think about how she would tell the world that her baby was not perfect if that became the case?

And then what? What would the worlds reaction be to the news that Kate's baby had a disfigured face, a heart condition, too many fingers, or so on.

You would see the Inquire blame Kate for what she ate or lack of prenatal care. Other's might blame the mishap on the foods or vaccinations she received while she was pregnant. There would be a very very small population that would defend her saying, "There was absolutely nothing Kate did to cause these defects.". Do you see my point? So often the blame somehow unintentionally gets put on the mother. We must be very careful how we treat new moms who are grieving surprises at birth and help them validate their thoughts and feelings reassuring them that this was in no way their fault.

And further in my mind, I couldn't help but wonder if an imperfect baby would be stripped of the honor of being a prince? What if the position as a future ruler was taken away because the baby had a cognitive impairment? All of this stripped from an innocent baby, less than one day old.

My point being.... What is the worlds perception of perfect? In the flash of a moment we place so much judgement on an innocent baby.

We need to start giving chances during those moments, not doubts. We live in a world where we are innoent until proven guilty. Why is this not the case with those who have special needs?

Why can't we assume these kids will do everything you and I can do, untill they show us otherwise?!!

The birth of the royal baby has my mind spinning not only about the worlds view of perfection but also about the demands of a special needs mother.

If Kate's baby did have something wron, would she be able to put aside her day job and assist with countless hours of physical, occupational, and speech therapy? Would she stay awake at night after her royal family has gone to bed and research the condition, treatments, best doctors, special diets, etc...? Would she get enough time off from work to get the baby to the 9 specialty doctors the baby would be assigned to? Would Kate have the time to repetitively teach the baby how to sit, crawl, stand, hold a cup, how to take a drink, when to use a spoon verses a fork, concepts such as hot/cold, big/little. Would she be available at all hours of the night to suction or reposition the baby and still look glowing in morning?

You get the idea. The demands of a special needs mom are never ending and exhausting. I know those of you who do not have special needs kids are thinking that motherhood is demanding or exhausting but I have both and can honestly say that raising MacGregor has been hands down a piece of cake compared to raising Maddox.

Here is just an example. At dinner MacGregor can stuff a piece of toast in his mouth and knows how to manipulate this so he doesn't choke. Maddox has a smaller airway and bites must be closely monitored. MacGregor automatically knows a spoon is for scooping and a fork is for poking. I've been teaching Maddox this concept for one year now, at every meal, every day. I draw pictures and make her use her fork to try and scoop Showing her it won't work. I rack my brain on how to get her to understand. MacGregor can pick up a cup of milk and guage how much to tip into his mouth and Maddox is still working on this skill two years later. I can give MacGregor a napkin and he says thank you. I give Maddox a napkin and we must work using sign language, pictures, and articulation techniques to get this simple phrase out.

Would Kate seriously have the time to turn every breathing moment into a teachable moment and spend every possible extra moment practicing?

I guess I must end my spout of random thoughts. Everything turned out perfect and Kate won't be faced with the hardships of what we special needs mother's go through. I don't want to be biased to only special needs though because motherhood for all children takes an amazing strength, passion, and commitment. It's something we wouldn't trade for the world. Thanks for checking out my blog, now go take 30 seconds and dedicate them to each of your babies, look at them, breathe them in, smile at them, and tell them how much you love them.

It happened. It FINALLY happened. The moment I have longed for since the day Maddox was born.



You see, three years ago we sat in a hospital room with a little baby. The doc gave us information about how Maddox would have heart surgeries, need glasses and possibly hearing aids. She may have gastrointestinal problems and will definitely be delayed in all areas of development. Yes, all things a new mom doesn't want to hear about their brand new cute baby lotion smelling newborn.

Let me tell you what happened today. I had a one hour conversation with the team from U of M regarding the results of Maddox's neuropsych testing.  Lets just say she blew the docs right out of the water. But that's small potatoes compared to what happened next.



Maddox came home this afternoon from a three day vacation with her babysitter. She was exhausted, running on no nap, and had to get up at 7:00 AM for speech therapy tomorrow so I tried to tuck her in early.  I gave her a drink of water, kissed her, and said, "I love you." 

Without missing a beat Maddox says, "LOVE YOU TOO MUM."




Whaaaat?!  Seriously?!  Tears to my eyes.



In the background I see Scott smile and hear him proudly say, "Good job honey." 



There are two defining verbal moments in this journey so far. One on the night Maddox was born, Scott grabbed my face in the hospital room.  He held his forehead against mine and repeatedly said, "I need you. I can't do this alone." 

I think back to how low we were that night and to hear Scott three years later witnessing this prized moment right with me is priceless. 

Even though some days I don't feel like it, today shows just how far we've come.

A bag packed for my mom, MacGregor, and myself.  Two bags packed for Maddox.  

What exactly do I think about when packing for U of M?  

I tend to dress Maddox in the most stunning clothes and do this because the doctors downstate see many, many kids who have Down Syndrome and I feel as though sometimes they think becuase they have seen one, they have seen them all.  

I need Maddox to stand out and have her needs be treated individually.  In response to my questions, I often hear feedback such as, "Most kids with down syndrome end up with glasses.  Most kids with down syndrome are hard to understand.  Most kids with down syndrome can go to public school but wont graduate with a real high school diploma."  The list goes on about what most kids do.  The doctors tend to put my daughter in a textbook category but fail to recognize that while the diagnosis may be the same, the conditions associated with it are most definitely not.  

What I mean is, let's say I tell my doctor I have a severe hearing loss and the doctor tells me that I need to position myself up front when in large crowds to hear presenters, I must use augmented devices like microphones attached to others when in a restaurant, flashing fire alarms, and a vibrating alarm clock.  Yes, typically someone with a severe hearing loss would need these things.  I don't.  I can read lips so I don't need microphones.  I have a dog that alerts me when the alarms go off and I have an alarm clock that slowly lights up to wake me and when that fails, and I have an awesome husband who serves as my second set of ears.  My point is that diagnosis's mean nothing and categorizing a person based on a diagnosis is near criminal.  Instead, I challenge the doctors to take time to learn about the individual, their needs, and what works for them.  

So back to packing Maddox's suitcause...  Each outfit is carefully picked, decked out with glitter and lace so she stands out.  This way people will stop to talk to her and are dumbfounded when she.....ACTUALLY RESPONDS!

It goes like this, "Hi cutie, I love your dress."

Maddox stops and says, "Hi, thank you, yeah, pretty."

The people usually giggle in astonsihment that Maddox cares about her pretty dress.  Once they realize this, they start the conversation, "What's your name?"  I pray with all my might, the hours we spent working on this pays off and she responds, "Maddie."  The adults usually say oh my, then you can watch the curiosity get the best of them and they want to know how old she is.  Holding up a few fingers, Maddox responds, "Three."  Then I get the smile, the look I have been waiting for and the, "Wow, she is doing really well."  

Mission accomplished.  Moving on!

One more person, one more heart we reached.  One step closer to our mission of showing the world that Maddox can do anything that anyone else can.  

Ok, now really, back to the suitcase.  I must also remember to pack all of her medicines, vitamins, foot braces, IEP/school paperwork and completed medical questionnaires.  Next, I review her appointment schedule and write down all the addresses.  This is a unique trip because MacGregor is seeing the Otolaryengologist too, because of a cyst in his mouth.  He also gets routine hearing tests because of his increased risk for hearing loss.  So, our crazy U of M agenda looks like this.

TUESDAY
Drive to the Kellogg Eye Center at 7:30
8:00 Maddox Pediatric Opthamology 

10:00 Drive to the Burlington Center
10:20 Physical Medicine and Rehabilitation

11:30-12:30 Carb load at the Olive Garden.

12:30 Drive to Mott's Children's Hosptial
1:00 Maddox Hearing test
1:45 MacGreagor Hearing Test
2:30 Maddox Otolaryengology 
3:15 MacGregor Otolaryengology

WEDNESDAY
9:00-12:30 Neuropsychology

I also have to remember to pack sippy cups, diapers, wipes, extra outfits, and snacks too.  Because the kids need a positive experience, I always book a hotel with a pool which means swim diapers, floaties, and swimsuits for all of us.  (FYI for all you parents out there, always always ask your hospital if there is a hospital rate.  I have been blessed to have this financial accommodation.)

For the car ride, gotta make sure each kid has a backpack full of their favorite toys and the absolute must remember to pack is the latest Elmo and Barney movie collection.  The night before I go, my car is filled up with gas and throughout the night I wake up in a panic wondering if I have forgotten anything - - - like my phone charger!

Once at the hotel, unloading the car with two kids literally fills the luggage cart.  

Fast forward to our appointments. How did they go?

Maddox's vision and depth perception is great although she is going to need tubes placed in her tear ducts.  I opted not to do it right now, but to wait until she is under for another surgery and will tie the two procedures together.    

Physical Medicine and Rehab said her foot braces are not doing a thing and we need to schedule an appointment with the orthotist to have them remade.

Maddox is complaining of right ear pain and her audiogram showed diminished hearing on that side, just outside of the normal range.  The left side is normal.  Her typmanogram did not move like it should for the right side either.  Antibiotics were prescribed, possible ear infection.  The good news is the tubes are in place and still working.

MacGregor on the other hand.  He went down because of a cyst in his mouth and the otolaryngologist wants to cut it out in August.  This was the result of his not so pleasant exam.  The good news for MacGregor is that his hearing is great, a thousand times better than mine!!

That night we hit the pool and ordered room service.  Two salads and two cheesecakes for 30 bucks and 
look how big the salad was!  It came in an Olive Garden bowl, crazy but delicious.  

The next day Maddox had her three hour test.  She was very resistant and kept asking to leave to go potty.  Guess the late night room service and full day of doctors appointments the day before was not the way to go for the most important test of her life which which would give us baseline cognitive processing data.  This information is designed to give us Maddox's strengths so that her teachers next year can incorporate these in their teaching.  With LOTS of treats, we got her through it.  I felt a little like Pavlov training a dog to salivate when a bell rang.  Basically we would ask Maddox to point to a picture and if she did this, she would get a sip of juice. The answer didn't have to be right, she just had to participate.  We saw a true three year old tantrum at this appointment.  I didn't know whether to be excited or scared! The results won't be in for a month and we will have a follow up appointment.  

After this appointment my mom, MacGregor, Maddox, and I packed up and headed for home.  We doctored, we shopped, we swam, and we ate like there was no tomorrow.  My mom came to help with the trip to Ann Arbor but also stayed for the week.  The next post will reveal the fun we had breaking all the rules.  

The photo below I had to share, is MacGregor stuck in the table in the hotel.

Thank you to all those who sent a quick note sending us thoughts for our trip.  I smiled at each one and thought about the support while we waited for each appointment.