Nervous wreck

Woke up at around 5am this morning. I have my MRI at 11:30am. Why is it that my mind is already thinking the worst? I watched my father die of Breast cancer. It was horrible. He was diagnosed at 45. I miss him so much. He would have loved seeing G and A and been such a great grandpa to them. My paternal grandmother died of agressive, premenopausal breast cancer when I was 5 or 6 years old. As did her sister. We have some crappy genes in this family.

I've gotten 2 beautiful children into adulthood. Dear Lord, I have two more to go.

Christmas pics

More testing

I now have an MRI scheduled for Monday morning. Hopefully we can get this behind us so that we can focus on other things (like packing). They told me I'd have to be in that little tube for 1 HOUR. Holy mackeral, can't they make them any bigger???

If God doesn't give you more than you can handle, he has seriously overestimated my coping ability.

Christmas exhaustion....

Work (retail) has been utterly exhausting - I don't even remember how many consecutive days I've worked without a day off right now. When I'm not at work, we're packing. We move on January 15th, and we are nowhere near ready. The stress of Woods job loss. A's birthday celebration yesterday was squeezed in between church and grocery shopping. I have a biopsy tomorrow am.

Is it 2008 yet?

Acting Debut...

G got the part of a shepherd in the school Christmas play. She chose to wear an Ethiopian shirt and natalla. We think she made a beautful Ethiopian Shepherd and she even got got a speaking line "Go to Bethleham and find the baby". She delivered it beautifully! Big sister M was very active in Community theater. We may just have another actress on our hands.

Princess At

A's official birthday is December 24th. If you are going to pick a random date, did it have to be Christmas eve???? However, one of the very first photos I ever saw of her, she was wearing pants with a candy cane design, so it does seem oddly appropriate. We believe she was actually 4 in August.

Tomorrow is the last day of preschool before the holidays. She will be Child of the Day, and we will bring the birthday snack. She hasn't seen it yet, but we're bringing a cake that says "Princess A" (in pink frosting, of course) with a tiara and sceptor. She will be sooo excited! Her preschool teacher already made her a special crown. I will even break down and let her wear a party dress to school tomorrow (she would wear a dress 365 days a year, but it's hard to play outside in the snow in snowpants with a fancy dress on).

A is a girly girl, who wears lip gloss, loves dresses and panty hose and everything pink. Of my three daughters, she is the only one who loves everything girly. I rarely even wear makeup and I'll take comfort over fashion everyday. So do G and my older daughter M. But A actually has lip gloss "emergencies". If she can't wear a dress, it ruins her day. She loves everything with a princess on it.

I can't wait for her to see her treat tomorrow!

Christmas around the world...

A's preschool class is busy working on Christmas activities. Wood and I were touched and surprised to see Christmas greetings in Amharic on the Christmas display board at her school, and brightly decorated umbrellas that the class had made while learning about Timkat. A was beaming with pride, saying "they use these in Ethiopia, that's where I'm from, momma!". How wonderful that her classroom teacher researched and added this to their Christmas activites!

I sat down with the preschool director today and gave her a heads up about what's going on with our family. I explained the situation that had unfolded recently with our family, the ugly racism and the following retaliation for reporting it, our decision to move, the whole 9 yards. "Explained" sounds too rational - what I really did was break into tears when I started into the story, and sobbed in her office. G has gone to that preschool since she was 3, A joined her there last January, and Wood helps them with non-profit development and fundraising. They love and adore both the girls and seem like part of our extended family. She was visibly upset over what had happened, and offered to help in whatever way the she and the staff could and made several concrete suggestions, such as organizing a letter writing protest. Talking to her really helped, I feel like I'm less shaky right now, however, I'll admit I'm looking at most people I come across these days with suspicion, wondering how they REALLY feel about our family.....

Is it cabin fever?

Asrat learned 2 important lessons this week:

1. We do not cut our sister's hair (4 large cuts with the hair scissors) or mommy will be VERY mad and an early bedtime will result.

2. Swinging the jumprope in the living room next to the Christmas tree is a VERY bad idea.....and will make mommy mad too.

A farewell to a friend....

Our first friend from when we moved to this area, our beloved pastor, died this week. He would have been 88 years old tomorrow. He confirmed our son and baptized Asrat. He wrote a letter of recommendation for us for our homestudy. He helped me find a job up here. He's helped our family in so many ways, both large and small. He was a wonderful, active, vibrant man of God. He was instrumental in bringing Lifeteen to our parish. He was also very active in the business community and in jobs creation in our city. He had such a wonderful life. He will be very missed. His funeral on Friday was standing room only in the large Cathedral and even our Bishop cried.

Monsignor Cappo, we love you and you will be sorely missed.

God is good.....All the time
All the time.....God is good

Elliot Larson Civil Rights act....

Do you know what this is? I never did. It's an Act, passed in Michigan in 1977 to define civil rights; to prohibit discriminatory practices, policies, and customs in the exercise of those rights based upon religion, race, color, national origin. That's the condensed version - it goes on for 12 pages. I'm actually surprised that our state has it's own legislation on Civil Rights. Should it really vary from state to state? Could you have a basic civil right in one state, but not another?

Does your state have it's own Civil Rights act?

When you're going through hell...

The past week has been very busy. We are moving. We sold our home and have purchased another home in another neighborhood. We have to be out of our current home by January 15th. Yikes. Our new home is much smaller than our current home, so I have to figure out how to have a major garage sale with about 3 feet of snow outside. Since I'm in retail, the holidays are my busiest time and to say I work a lot of hours during 4th quarter is an understatement. But it is what it is. Winston Churchill said once "If your're going through Hell, keep going". That's what I feel like we're doing.

As our situation has unfolded, I'm heartbroken and sickened by the derogatory comments and characterization of our family, due to the color of my daughter's skin. That our family's economic stability could be thrown into turmoil due to small and narrow minded people who apparently aren't current on Civil Rights legislation is mind boggling. The ugliness of racism stands in direct contradiction to the very meaning of America. But we are fighting back. I feel like we are hunkering down and preparing to do major battle.

Racism...

"It demands great spiritual resilience not to hate the hater whose foot is on your neck, and an even greater miracle of perception and charity not to teach your child to hate."
---James Baldwin (author)

Our family experienced an incident this week that shook us to our core and turned our lives upside down. I trust that God has a plan for us, a purpose to come out of this. It's just very hard to see right now. I'm cognisant of the fact that our actions now are important - to show our children the importance of standing up for our beliefs, model our response to those who show ignorance and racial intolerance. Regardless of the cost.

Let it snow, let it snow, let it snow!

It's been snowing for days now. We got about 12" in the past two days. 2-4 more inches scheduled for today, and 1-3" overnight. This part of living in the UP is hard to get used to. It starts snowing in October, and stops in late April. 7 months of continual winter can drive you a little bonkers! There is no planting in the ground in the spring until June 1st. It's not hot until mid July. And it snows again in October. We get an average of about 240", sometimes more.

When we lived in Metro Detroit, we got about 36", for comparison.

There are three places to go with kids in the winter when cabin fever hits and visions of "The Shining" are setting in: the library, the Kids Museum, and the YMCA. We have annual, sanity saving memberships to the Kids Museum and the YMCA. We are known on a first name basis at the children's section of the library. We have a mall, if you can call it that. There are about 30 stores, most of the tiny mom and pop variety. There are three main anchors - JCPenney's (where I work), Younkers, and Kohls. No food court, no play area, so not much of a distraction for the kids.

None of us are particularly winter, outdoors type of people. Except for A. She loves any kind of weather, hot or cold. She could play in the snow all day. People told us it was cruel to bring a child from Africa to the UP because of the climate. Obviously, they have never met a child like my daughter!

Some photos of our winter wonderland.

Books, Books, Books...

G is reading. She started spontaneously reading in July. We were sitting in the car, under a billboard, when she looked up and said "mom, what does "mix it up" mean?" It was a billboard for Culver's milkshakes. From that beginning, she has taken off. She spent maybe a month on easy readers. Now, she can read books without pictures for clues. At bedtime, she is trying to take over the reading of bedtime stories. Much to A's chagrin.

By the records, the girls are 18 months apart. In actuality, they are about 12 months apart. However, much that happens with artificial twins occurred with them. G is very, very tiny. A grew very, very fast. They have been the exact same size for over a year now. They wear the same clothes, the same size shoes, are the same height, and A weighs a pound or so more than G. Due to the similarities, I think we treated them very similarly. My peas in a pod. The dynamic duo. What one did, the other one did. We didn't really treat G like she was older or vice versa. They went to the same preschool.

A had a hard time with G going to Kindergarten this year. Our mantra has been "when you are 5, you will go to kindergarten too". Repeat. Over and over. A is not convinced that she is not being deprived in some way. Now G can read. And read extremely well. So A thinks that she should read too. But she is not there developmentally. She sees herself as THE SAME AS her sister, so she is bound and determined to try. She doesn't just want to tell the story from the pictures. She wants to read the words. When she can't, I try to help. Then she gets mad. G doesn't need any help, why should she? So I stop helping. Then she is mad at herself, for not being able to read. Sweetie, mommy couldn't read at 3. Daddy couldn't read at 3. G couldn't read at 3. It's not a contest or a race. You are not less than because you can't read. How can we fill that empty space inside that tells you you have to do everything perfectly or you are flawed, defective?

So we downplay G's amazing acomplishments, so as not to stir the pot. Wrong, I know. I've never seen a child read like this - ever. She is so far beyond her classmates with reading that her teacher is putting her in a program for gifted readers. They've never had a kindergartener in the program before. G has always been in love with words. She could talk at 9 months old, and used 3 word sentences by her first birthday. When she was 18 months old, there was nothing she couldn't say. And use correctly in a sentence.

G, we're so glad you have mommy and daddy's love for books. They will feed your mind, fill your soul. A, be patient. Give yourself time to grow up. Be our baby a while longer.

Sick again

G is coughing again. Our respite this time was way too short. I'm angry, frustrated, and completely overwhelmed.

Last night, G was overtired from lack of sleep the night before and feeling irritable from her medication regimen we use when she starts coughing. She had a complete meltdown (very unusual for her) and was hysterical over a minor issue involving additional bedtime stories. I held my ground, because I had already told her no. Wood got irritated with me because she was sobbing and that triggered her coughing. I think he wanted me to reverse my decision to stop her crying. I said that it was ok to let her cry. He responded that it WASN'T ok, she could start struggling to breathe.

So everybody went to bed unhappy - G because she didn't get to stay up unreasonably late, A was miserable because I was spending time with G and triggering all of A's fears of rejection and insecurities, causing a huge meltdown of her own, Wood because he felt I should have done anything to stop the crying, and me because G's illness just terrifies me and makes me feel helpless with a good side of guilt for not having quite figured out how to best deal with A's insecurities and fears.

Happy Halloween!

At the Friendly frights forest - complete with glow stick barettes!

Soccer playing princess.....


She scores!


Pool playing princesses!



G was bound and determined to get the donut on the string!


A decorates pumpkins at a gathering for 3 and 4 year olds.

Car seats

We need a new car seat for one of our cars because it is just about outgrown. Both girls are currently in 5 pt harnessed car seats. Three of our seats go to 49" and 65 pounds. But to avoid having to transfer car seats on a daily basis, we have a total of 4 seats (2 per car). We are on the road on long trips a lot, and safety is very important to me. When I started using our older son's Subaru Forester after he left for college, it didn't have a tether anchor in it. The dealership up here had never ordered one, and was clueless. I persisted, and they eventually found the tether bolt and ordered it for us. When Wood took the car in to have it installed, the tech goes "wife a car seat fanatic, huh?".

I'm the only parent in G's kindergarten class that has an issue with them transporting the kids on field trips in parents cars using only seat belts. These are small kindergarten kids - nowhere near the 4'9" tall that kids need to be to use a regular lap/shoulder belt without a booster seat. And they are using the middle, lap only belts on some parents cars, which are totally insufficient in the case of even a low speed accident for small children. I told them at the beginning of the school year that I would have to go on all field trips because G needs to be in a car seat due to her size and weight. Their suggestion was that on field trips, we leave the car seat to be installed in the driving parents car. Over 80% of all car seats are installed incorrectly. The parent would need to be familiar with their owner's manual's instructions for installing a car seat, and my particular seat's installation instructions. It take a good 15 minutes to correctly install one of the kids' seats. All car seats don't fit all cars. Do they really think it's likely that the seat would be properly installed in this scenario?

G is 5 and a half. I started looking at boosters, because I'm not sure how much longer we'll get out of another carseat, even though I prefer the 5 pt harnessed car seats for her. But maybe for the less frequently used seat it would be ok. During my research, I came across a LOT of data indicating that 5 pt seats are the only way to go until they completely outgrow them. Then I saw this:



We'll be getting a new car seat that can be used harnessed up to 80 pounds and 53".

Blessings....

"From the fullness of His grace we have all received one blessing after another." John 1:16

G is definitely getting better! She has more energy, slept VERY well last night (no horrid coughing to wake her multiple times) and hasn't used her rescue inhaler at all today! We have been using her rescue meds, in addition to our "normal" arsenal of medications, around the clock for 27 days now. She was able to run across the room today without experiencing a prolonged coughing jag. She has good oxygen saturation levels. This is, indeed, major progress. There is no sweeter sound that the blessed SILENCE from her relentless coughing. No matter how many times a day I hear it, for how many months in a row, it literally makes me wince every single time she coughs.

Since she doing so well, we promised her we would all go tonight to the Moosewood nature center's Friendly frights forest, followed by hot cocoa and donuts. Hopefully, the return to normalcy. I will attempt with every bone in my body to resist the compulsion to 1)completely overbundle her 2)let her run ahead if she feels like it 3)not ask her every 30 seconds "are you breathing ok?" 4)put a wall of Purell between her and any conceivable germ.

Home again...

We got home from Detroit this week. Thanks to everyone for your thoughts and good wishes. G appears to be slowly recovering. Nothing any of the dr's gave her really seemed to have any sort of immediate effect. Nothing to make us (or the dr's) say "XXX is the best treatment for her". It appears to us that despite all the medications and treatments, that we were supporting her at best and giving her body a chance to recover on it's own. Which can be difficult when your immune system has been wiped out by powerful steriods.

Don't get me wrong, steriods have their place for serious illness. She was first given steriods in Arizona last Feb when she had a very scary allergic reaction to Amoxicillin that she was on to treat a sinus infection. At the ER, they gave her vast amounts of benedryl and steriods. She was on steriods for a week after the ER visit. And guess what? Her coughing vanished. She could breathe. To Wood and I, it appeared to be a miracle. She had been coughing nonstop at that point for about 3 months. It was getting worse and we were at our wits end. It made us realize that she was being undertreated for her asthma and other pulminary issues.

Seeing the remarkable effect they once had on her, I know why the drs want to turn to them again. But they don't have the same effect on her. They have serious and significant side effects, including wiping out her immune system - right at the beginning of cold and flu season. They give her wild mood swings. They make her crazy. And they aren't working.

I really need a diagnosis. She apparently has features and characteristics of several different issues. Because she has seen multiple drs, we get the impression that each (except for the specialist in Milwaukee) wants to let the others do the diagnosis - they just want to treat the symptoms and leave the long term issues to others. The Children's specialist wants to see how her symptoms progress, what's next, how she does over the next few months. It has been almost 2 years now since she got her first pneumonia. Until then, she was a perfectly healthy child. She had almost never been sick. She had never even had an ear infection. My hope is that we can get her back to that point, but deep down I fear that those days are gone.

A used to be insanely jealous of when her sister got ill. She wanted the attention, medications, even the dr's visits. She has now seen firsthand of all her sister has to go through, and wants no part of it.

ER visit

We took G to the ER this evening. Her cough is just horrendous. They are adding Zithromax to our slew of drugs. They didn't seem to have a lot of confidence that it would help us reverse this latest downward spiral. They said she may require IV steriods. Heaven help us. Our experience with IV steriods last December when she was hospitalized was horrible. G stopped talking to us entirely. She cried almost non-stop. She was incoherant and confused. Her reaction was so extreme that they stopped administering them. They weren't helping her anyway. I'm starting to think about what I need to pack to head back to Milwaukee.

It's just a roller coaster, isn't it?

She was almost better. I swear. There was definite improvement a few days ago. It was not just wishful thinking by her delusional mom. G is coughing with a vengance since last night. She's now been taking rescue drugs and higher dosages for almost 3 weeks straight. We spent a good part of this evening watching Funniest Home Vidoes together on the sofa, with my hand on her chest counting her respirations and checking her oxygen level. As her mother, I'm thinking I shouldn't have to KNOW her oxygen level. It should be a given that my daughter would be getting sufficient oxygen. I feel like kicking and screaming "it's not fair!".

Early October in the UP

Looks like this! It's getting pretty cold. We should get our first snow pretty soon. Kids wore hats, scarves and mittens to school this week.

My two princesses....

We have two princesses for halloween this year. We recently watched Cinderella, the version with Brandi playing Cinderella, and that's what A decided to be for Halloween. G, with her pale complexion, makes a wonderful Snow White. Here are some pictures from a Costume party at our local Children's museum.


True royalty.....

A beaming princess


The fairest of them all



No need for a prince to rescue this princess!!





G & A


G's Dr wants her swimming every day.


Can you tell how much A loves the water??

The road to recovery...

G has started to improve. Her breathing is coming much easier for her and the tightness in her chest is improving. Maybe we have turned the corner on this one....

Isn't that for sick kids??

We are home from Children's in Milwaukee. The hospital staff was wonderful (as usual). The staff brought to our attention that we now qualify to stay at the Ronald McDonald House across the street from the hospital and tried to encourage us to do so. For those who aren't familiar with these, a Ronald McDonald House (named after Ronald McDonald) is a place where the parents of children that are in a nearby hospital can stay at night for reduced or no cost. These wonderful facilities have provided more than 10 million families with temporary residences near medical facilities where their children are being treated for serious illnesses.

Serious illnesses. This is what gave us pause - uh, aren't these for families who have children with serious or chronic illnesses? Yes, these trips are financially hard. Yes, it would be incredibly convenient. But those are for sick kids and their families. It is hard for us to view G in this light - she is just G, our silly, adorable, incredibly smart daughter.... who has significant and ongoing respiratory issues for the past two years. I'm very comfortable with the chasm in my mind that seperates THEM (families with sick children) from US (family with a temporarily sick child). Stress on the word temporary. Meaning will recover fully and go on to live a full and unrestricted life.

Is is denial that made the suggestion that we stay at the Ronald McDonald house felt like a shock to my system?? Didn't the fact the we are traveling hundreds of miles on a routine basis to seek specialized medical care for our daughter give us any sort of a clue? As parents, it seems intuitive that we always look for the positive, believe in the bottom of our hearts that we can protect our children from anything, fix anything.

Last winter when she was so so sick, and hospitalized for a week with no improvements despite oxygen, IV's, steriods, antibiotics, etc, it took me 4 days before I called our priest and had him come to the hospital. G received the sacrament of Annointing of the Sick at that time. Why did we wait 4 days? What was so scary for us about these comforting words "Through this holy anointing, may the Lord in his love and mercy help you with the grace of the Holy Spirit. May the Lord who frees you from sin save you and raise you up." James 5:14-15: "Is any among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man, and the Lord will raise him up..." Was it because I had to admit that I wasn't in charge, that I couldn't fix my beloved daughter by my sheer willpower and desire to do so?

Children's Hospital

G's doctor in Milwaukee somehow found room in his completely booked schedule for G. We leave today for Milwaukee. This will be our 4th trip to Milwaukee for G, and we were there for the IAC for A shortly after she came home. We are completely impressed with Children's Hospital of Milwaukee. Rarely have I ever seen such a high level of customer service that completely permeates the entire organization. We've had physicians stop and ask if we needed help as we walked the halls confused, looking for the lab or testing location. Not only did they ask us if we needed help, they walked us to the location, even if it was completely out of their way.

G's dr is just fantastic. He patiently answers all our questions and acts like he has all the time in the world for us. The care we receive there is top notch, and well worth the 7 hour drive each way. We always come home with answers and a plan of action.

Keep us in your thoughts that we can stay out of the hospital until we get there. G is now on her max doses of all her meds, so continued low oxygen levels will land her in the hospital.

Milwaukee bound....

The clinic in Milwaukee is trying to set us up to see G's dr on Monday. He's also the department head and a professor at the University/Medical school, so it's a bit difficult. Her cough is getting very tight and her breathing is wheezy, even pulling out all her heavy duty medication and keeping her on her rescue meds every 4 hrs around the clock. Praying that we can stay out of the ER until then.

The dreaded cough...

is back. Words cannot express how wonderful it has been for the past few months. The dreaded cough was gone. Nights were peaceful for G. She had more energy and actually ate more than a few bites at each meal. She had color back in her face.

Last night she ran a slight temp. This morning, as we were getting the girls ready for school, there it was. My head spun around so fast when I heard it - the tight, barking cough. We gave her her regular morning breathing treatment and added her other meds. She did seem better. All morning long at work, I waited for the phone to ring from the school. They know how to give her breathing treatments at school, but since she'd already had one prior to school, if they needed to give her one, she'd have to have an ER visit. We have also told them to call 911 if she is having difficulties breathing, and to call us second.

The phone in my office ran while I was on a district wide conference call. I grabbed my cell phone, went into the hallway and called Wood, to see if it was him. While doing so, it must have come time on the conference for me to present the divisions I'm responsible for. I was called on to present, and there was dead silence from my office. Oh, well. Wood ended up picking up G and taking her home for the rest of the day. She is doing better, but the cough is still with us.

If it is worse tomorrow, we'll take her back to Milwaukee. The dr there wants to run some tests the next time she is coughing and having breathing difficulties. She's having her breathing treatment now, and hopefully will have a good night.

Home repairs....

As some of you know, our home suffered significant hail damage during a huge hailstorm in late June. It has taken 2 months to settle with the insurance company. We need a new roof, all new siding, and all new windows in our home, except for 2 lone windows that somehow managed to stay undamaged. Most of the houses in our area got hail damage on 1 or two sides of the home - we have damage on all 4 sides. We live about 1/2 mile from Lake Superior and our house is up a very tall hill - we are probably the highest house in the neighborhood. The hail came down so hard, that it took about 1/2 the leaves from our trees down in our heavily wooded lot - it was just a sea of green, pummeled leaves. It took N and I 50 hours to rake up all the leaves. The hail destroyed all my flowers and landscaping.


We are now frantically trying to get the roof and the siding replaced before it snows. When you live in a place with 240" of annual snowfall, it starts early. Hopefully we can get the replacement windows ordered soon as well, but since those will take 6-8 weeks to order, we will be in the thick of winter by the time they go to install them. Uggh!

Indian Summer...

We're enjoying it while we can - it will be snowing very, very soon!


Note the ever present breathing apparatus that accompanies G everywhere she goes....

First day of school....

Kindergarten for G, A is now in the "Yellow Center" at preschool.

Trip to Detroit

Moving big brother into the dorms...



Summertime fun with your sister



Miss A

County Fair

We love to go to the County Fair!

Feeding the Alpacas


Grace has been riding Patsey since she was only 2 years old!

Grace was MORE than a little enthusiastic on the motorcycles!

Fearless Grace rides the dragon coaster solo!


Grace calls these "flying porches"!!

Grace convinces Asrat to ride the dragon coaster with her.

Milwaukee pics

Here's some pics from our recent trip to Milwaukee.


No trip to Wisconsin is complete without the trip to the dairy farm at the zoo!


Big sister Maria would be so proud!


At the botanical gardens with Dad


Learning about butterflies


Hanging out at Uncle John's and Aunt Sue's house


With cousin Claire

G & A