The Princess and The Queen

Ugh, work really wreaks havoc with my blogging schedule- the nerve!!! Work was the usual emotional and physical drain. I am off for a few days but I may pick up Saturday for some extra dough. Things have been relatively uneventful here for a few days. Relatively is the key word in the last sentence. I took Anna for her 6 month check up today. She got shots which is why I am up and posting at this hour. She is running fever and feels crappy and keeps waking up. She weighed in at a whopping 13 lbs and 14 oz (I am pretty sure about the oz, I cannot remember for sure.) Anyway, she is somewhere between 13 and 14 lbs. She is 28 inches long though. She is off the growth chart for length and barely on it for weight. Tall and skinny she will be- yeah for her. She was so good at the appointment. I also went and got a pedicure today. Anna sat in my lap the whole time and never made a peep. She just smiled at everybody and was her usual perfect little self. She is amazing. My niece and nephew are spending the night here tonight. I am so glad they love being at my house. Carly was really peeved that she had to go to bed at 9 and didn't get to stay up late with the "big kids." She made me promise she could play more tomorrow. I promised. I think we are going to get her hair cut off in a bob tomorrow. I've been considering it and now her cousin Kacy has hers cut short (she donated hers to locks of love) and Carly always wants to be just like Kacy. They were so cute tonight- Kacy was helping Carly be a princess. I hope she always believes she is a princess because she will always be my princess. I try to get her to say "I am the princess and daddy is the queen," but alas, she keeps calling daddy the king. I will have to work on this!

Wisdom Beyond Her Years/Holland Part 2

Wow, what a weekend. I didn't get a chance to post yesterday and was so busy today and I kept feeling like I was going to explode if I didn't get to write soon. This is so therapeutic for me. So the Rattlesnake Round-Up went off without a hitch. It was a fund raiser for our volunteer fire department. My crazy husband got in a pit with 80 rattlesnakes because a female Jr firefighter did it and he didn't want to be shown up by a girl. MEN!!! Luckily I was gone at the time taking Carly to get chicken nuggets so I did not have the pleasure of witnessing the event. I should have pictures soon where he had one coiled and resting on top of his head. I always knew he was crazy, now I have proof. So after the round-up we came home and brought Collyn (my nephew) and 2 of his friends. They are 11 or 12 yrs old and pretty much self sufficient. They were well behaved and enjoyed being away from home. I always hope to be able to be the safe & fun hang out for kids when they need to get away from their parents. They were all quite well behaved but boy can they put away some groceries!! I am used to a little girl who thinks anything more than 3 chicken nuggets is way too much food. I got them 2 large pizzas for dinner, set them on the counter, turned around, and voila- they were gone. Next time I will be more prepared. Then we all went to a Memorial Day cook out and pool party and then off to the fire station and then a few other errands and then finally home. This morning before the cookout Carly's friend Kinsey came over and they were ballerinas and dancing around the living room. They are so cute. Then they decided to run a fast food restaurant and used the pet door as their food window and passed play food back and forth through it. Their imaginations are incredible. Anna has had a pretty good weekend also. She has actually fussed a bit which is such foreign territory for us. She rarely fusses and is just usually smiling. She is cutting some teeth (I think) and so I guess this is the explanation. I am actually a bit relieved by the fussing. I have been reading up on something called Angelman Syndrome and I worry that this describes Anna. I am not trying to borrow trouble- it is just that is fits except for she doesn't have an unusually small head but Dr. Miller had told me to be very diligent about watching her head growth because it could be a sign of something "far worse" than CP. He never mentioned the word Angelman's but I wonder if this is why he mentioned watching head growth. I guess I'll never know because I got a letter in the mail that said he is leaving his practice to teach full time and do missionary work. I am very upset but who could fault a man for that decision. It's not like he's leaving to pursue a career in crack dealing or something. I am sad though and will be in search of another neuro although I doubt I will find another who makes me as at ease as he did with Anna's diagnosis. I am starting to have some problems feeding Anna. I know you are wondering about the picture of the spoons- the green one is what we use to feed Anna and the Elmo one is a normal sized baby spoon. She is doing so much arching of her back that it is becoming increasingly difficult to get food into her mouth because she is in such a funky position. Then if you do get it in her mouth her tongue thrusting is getting worse so she tends to push more food out than she gets in. Before you say, "All babies lose a lot of their food, " I know but this is different. I am ready for her other evals to be done so we can get some therapy started here. I have to work tomorrow and am not really looking forward to it. I love my job but I love to sleep also and the two are just not compatible since I have to get up at 5 a.m. on the days I work. I hope you had a great weekend also. Later... Oh, I almost forgot to tell you how much a kid's perspective differs from ours- Carly and I were in the car today and she jokingly says, "Mommy, I wish I had 3 legs." I asked her why and of course she had no clue. I told her that if she had 3 legs we wouldn't be able to find any shorts or jeans to fit her and she says, "That's o.k. mommy, I'd just wear skirts." Sometimes I wish I could see things through the eyes of a child. It is amazing how they can adapt while we are still sitting around worrying.

I found a sequel to the Holland piece and am praying to get to this point some day:

Celebrating Holland - I'm Home

I have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.I think that Holland is used to wayward travellers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

The Recital

Carly's recital was today and it was so awesome. I was so proud of her and all of the other girls as well. They did a fantastic job and I have to say that for only a 45 minute class once a week for about 16 weeks, they were amazing. I'd still be standing there with my finger in my nose trying to figure out what to do next. Kenneth and I continue to struggle with all of the emotional turmoil we are in right now. We decided it would probably be best for him to go away for a week and get his thoughts together and just have some time away from everything that is going on here. He may go to Colorado to stay with his friend Robert- we shall see. Marriage is such hard work. At the recital there was a dance to the song "All Things Are Possible" or maybe it is "When I Call On Jesus" but anyway it was a dance with a few of the experienced dancers dancing with a girl in a wheelchair who looks to have CP. I cried my eyes out because it was such an inspiration and such proof that you can do anything you put your mind to. I wanted to tell her mother what an inspiration her daughter was but I couldn't stop crying for long enough to talk. I do not think there was a dry eye in the place and the girl got a standing ovation. She was awesome. I hope to get the DVD of the performance soon and I will hopefully be able to post it here. Anyway, I have to get up in about 6 hours for the Rattlesnake Round-Up so I suppose I better go to bed. I'll try to post more tomorrow. Goodnight...

Pie Bandit

I had to work yesterday and today so I've not had any time to post. I sometimes have a little down time at work but not this week. We were so busy, there was barely time to pee, much less get on the Internet. Anyway, I am off for the next 4 days and am looking forward to some relaxing (hopefully). Carly's recital is this weekend so that should be fun and then we are going to a Rattlesnake Round-up. I hate snakes but I will go because it means a lot to Kenneth. Maybe I can find some way to conquer my fear a bit- I doubt it. Debra from ECI called yesterday and said there will be two people coming out on June 6 to do Anna's evaluations. Of course I am scheduled to work but my boss has been great to work with me and she let me off. Debra did not mention if she had Dr. Miller's records yet so I still don't know the status of that. We have been able the last few days to start giving Anna 1/2 Alimentum and 1/2 GoodStart Formula. For anyone who has ever used Alimentum, it is like $27 a can where regular formula is more like $12 a can. We spend about $60-$70 a week on formula right now. If we can get her switched over to GoodStart it will be a huge pay raise. We will keep our fingers crossed that she continues to tolerate the GoodStart. I have been thinking a lot about something Debra said the other day and it really makes me upset. She said that when Anna turns 3 she will be transitioned into the school system for further therapy. BUT...it has to be her local school which is Thackerville. I know there are some good teachers and good kids in Thackerville, but I do not want my kids to go to school there. We wanted to send our kids to Marietta for school. The school is larger and would provide more opportunities for the kids. Also, I want my kids in the same school. So, either we put our kids in a school where I do not want them or we have to move to go to the school where I want them to go. Kenneth says he refuses to move which irritates me but that is a whole other post which I will not go into. So I am left again to try to figure out how to do what is best for everybody. I sometimes get so tired of trying to make it all work out and keep everybody happy, it is absolutely exhausting. I feel like I cannot keep my husband and my kids happy at the same time but they both have needs and I don't know how to fulfill every one's needs or how to decide whose needs are most important. I need to spend some serious time in prayer. I know the Lord will work it out but I also believe he gave me a brain for a reason and he expects me to work through this. Ugh...can I ever just get a day off? Anna has been rolling back to front for a little while but she made it front to back today. Yeah for Anna! That chocolate pie I spoke of in the last post was still in the refrigerator. Kenneth opened up the refrigerator to find the pie with the lid off and 2 spoons stuck down in it. Carly denied having a taste although the spoons were clearly hers. She finally laughed and said, "It sure was good!" What a girl.

ECI & Chocolate Pie

I'm sorry that I was not able to call and update everyone who wanted to know how things went today. After our ECI meeting it was off to get Carly from school, take her to dance, get her fed, pick up Kenneth and Anna and head to my parents house for dinner. Kenneth and my dad worked on my parent's barn until dark and we just got home. SO...Sooner Start (ECI) came out today. The lady's name was Debra and I liked her. She played with Anna, asked a lot of questions, and explained the program to us. She said that if Dr. Miller (neuro) actually wrote "cerebral palsy" in his medical record then Anna is accepted into the program automatically. Dr. Miller told me that Anna is technically too young to be diagnosed with CP but that she has CP (i.e. If it looks like a duck and walks like a duck...). So hopefully it is in the record. If not, she must show a 25% delay in at least 2 areas or a 50% delay in one area to qualify for services. The areas considered are adaptive, cognition, communication, physical, and social-emotional. Anna will for sure meet the 25% delay in physical but possibly not in any of the other areas. She might qualify in adaptive (feeding) or communication (lack of cooing/babbling). It will be a close one on either of those 2. So, if she isn't 25% behind in at least 2, will have to wait about 2 months and then have her reevaluated and at that time she will be 50% delayed in physical and then she will qualify. So yes, if Dr. Miller was not specific we have to let her fall further behind to be able to get her help. I will pray that Dr. Miller was specific. If he was not I suppose this is where my battle begins to start getting her the services she needs. Debra felt that her left arm and both legs are affected. The right arm seems to possibly have been spared. So Debra is supposed to call me on Thursday and let me know what Dr.Miller's records said and when they will be out to either do further testing or to start developing her IFSP (individual family service plan) and get her therapy started. If she requires further testing there will be 2 different people who come out to test her and decide if she meets the 25% rule. So here I sit eating a big fat piece of chocolate pie to make myself relax. I am not sure why my mind thinks that making my butt bigger will calm me down, but hey, whatever. I have to work tomorrow so I need to go to bed. I'll try to update more tomorrow. Are you confused yet? And to think-this is only the beginning...

Could God Really Feel This Way About Me?

I received this in an email and was touched...

Ode to Special Moms
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. "Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."

- Erma Bombeck, May, 1980

Verbalizing & Realizing

Yesterday and today have been relatively uneventful and for that I am greatful. This morning Carly had her dress rehearsal for her ballet & tap recital. The girls were so cute. I am so proud of her, she has learned so much in just a few short months. I did some stretching with Anna today. I used to think it was mainly her left arm/hand that were affected but I think her left leg may be just as bad. It is almost like it has a "catch" when you try to straighten it out for her. Luckily she loves the stretching and just smiles through it all. I have read stories of babies and children who scream and cry during the stretching so I am so glad Anna seems to enjoy it. It is so funny how you get so used to your child that you don't notice things about them. We were at a birthday party for one of Carly's friends today and one of the other moms wanted to hold Anna. She seemed suprised by how stiff Anna was. After holding her for a little bit she gave her back to me because she was having difficulty keeping Anna in her lap. I guess the back arching and stiffness have just always been a part of Anna so I never realized how evident it was to others or how different it felt from holding other babies. I told her Anna has cerebral palsy and that is the reason for the stiffness. That was the first time I have verbalized those words to a stranger and it felt so wierd. It made it feel even more real than it already does. Thinking about it and saying it to perfect strangers are two totally different things. Then the others sitting around had this lookof pity on their faces. I do not want pity. We have a two wonderful, beautiful, perfect daughters and although I do not like what has happened, I have a great life and do not need any pity. I also find that when people hear she has CP they become afraid to hold her because they are afraid of hurting her or not knowing what to do with her. The thing is that she is the same baby that everybody held and knew what to do with prior to the diagnosis. We just have a name to put with the symptoms. She is still a sweet little baby who just needs love. She is no different than before. I am so ready for Sooner Start to come on Tuesday. I need a plan. I am usually very unplanned and unscheduled in my life but with this situation I really feel like I need a plan to help reestablish my sanity (or maybe just to establish it, I think to reestablish implies that I once had sanity). I am supposed to work in the nursery at church tomorrow so I guess I better go to bed. Goodnight...

WWF

For the first day since Anna's diagnosis I did not cry. I guess I'm just all out of tears but I'm really hoping to not get a new shipment of them in anytime soon. I had a crazy day at work which included getting my butt kicked (along with 5 other nurses) by an 80 year old woman. I cannot believe I am even admitting to that but I thought it was quite impressive on her part. She had me by the necklace and was holding on for dear life as she began kicking her legs up over her head in an attempt to get us all to let go so she could pull her tube out. Intubation without sedation is never a good thing... I have to work again tomorrow so I'm hoping to not go on to have round 2 with her. The girls have been great tonight. Kenneth said he did a lot of stretching exercises with Anna today. I am so glad to see him getting involved with her care. I hope that soon we will be back to seeing her just as Anna and not as our baby that has CP. She has got to be a child, not a diagnosis. Kenneth keeps reminding me how early I have to get up so I guess I better go to bed. He said one of the guys at the station kept him up last night snoring. I must call and congratulate and thank that guy- revenge is sweet sometimes.

The Midget

Today was a good day. I finally got a needed and deserved 8 hours of sleep. Carly has gotten into a habit of getting up at 6:30am, I do not know why. She got up again at 6:30 this morning and I moved to the couch with her and she watched t.v. She would wake me up every 30 minutes to change the channel when her show would end. I pity the mothers who had to raise children without a DVR- Handy Manny 24/7 is awesome. At about 8:30 I hear her sweet little voice in my ear say "Mommy, the midget (as she lovingly refers to her sister) is awake." I chuckle and then get up and our day was off to a good start. We got some much needed rain and I am thankful for that. It greens up the weeds in or yard which when mowed short look like grass. Sooner Start called and they will be coming out to our house Tuesday afternoon to meet with us and start the evaluations. I talked to many friends today. I have been blessed beyond measure by the volume of people who have come out of the woodwork to help us through a difficult time. I picked up an extra shift at work tomorrow but I won't go in until 8:30am. I like picking up shifts rather than scheduling them ahead of time. It gives me a little more flexibility in case things come up plus I pick the shifts up on my own terms- like going in at 8:30. I think I can squeeze in at least 7 hours of good sleep tonight- yipee!

The Joke Commonly Referred To As Social Security

I got a whole 4 hours of sleep last night and then it was time to get up and off to work I went. It was a pretty easy day at work which was nice and I feel it was well deserved. I got to talk to my friend Emmy today which was nice. Her son Ethan has spina bifida and she has felt the pain I am feeling. She reminded me that I have forever to deal with all of this because it is not going away so that I don't have to figure it all out right now. She said it is ok to be sad and angry for a little bit but then I must move on or it will ruin me. I agree. I called Sooner Start today to see how long it would be before they get to Anna. Sooner Start is the Early Childhood Intervention program for Oklahoma. They said it may be a couple of weeks. When I called them last week they said they would call us on Monday which was yesterday and I never heard from them. I called to checkup and now it went from 3 days to a couple of weeks. I will try to be patient with them. I have heard great things about them so I certainly do not want to get off to a bad start. I also called social security to see about getting Anna on disability. What a joke!! I do not want to have to rely on "the system" but if it is available I see it as another resource to get what we need for Anna. They informed me that Kenneth and I make "way too much money" to get any assistance. Get this- a family of 4 has to GROSS less than $2,600/month to qualify for anything. Whatever!! Since we spend over $600/month just on gasoline I seriously doubt we could live on $2,600/month. So I think we'll just keep on working and hating the system that encourages you to not work so that you can get the services you need. I was very frustrated but I shouldn't have expected anything more from social security. I had just hoped maybe something I have paid in would help my baby because Lord knows I'll never see a penny of it when it comes my time to retire. I am dozing off as I am posting this so I guess I am finally going to be able to sleep...Goodnight.

A Normal Night

Today has been another roller coaster but I have to say it felt like I at least had a seat belt on today rather than hanging half out of the ride like I felt yesterday. Yesterday was a terribly hard day. Kenneth and I had a difference of opinion on more than 1 occasion. I do not really wish to air our dirty laundry on here but I think I have to be real and being real means that things are not easy right now. The reality of it is that marriage is hard enough when things are going your way. When things get tough, marriage gets even tougher sometimes. It would be nice if it was always a Cinderella tale but anybody who is married knows it just isn't that way. It is hard because we are in such different places emotionally right now and sometimes it is hard to support each other when you can't understand where the other person is and you are so exhausted that you aren't sure you even have the energy to go exploring and meet them where they are. Kenneth and I have endured many hardships and have stuck it out and always come out stronger in the end. I know this will not be any different but it may be tough getting to that point. God never promised us an easy life though, he just promised that he would walk through it all, the good and the bad, with us. We went as a family to the park today- we also took Carly's friend Kinsey. Kinsey has been such a blessing. She lives next door to us and she and Carly love each other. She has made our lives much easier because she keeps Carly from being lonely when we cannot play with her or entertain her. Carly is an awesome kid but she just isn't all that great at entertaining herself. Anyway, we went to Leonard Park and the girls played and Kenneth and I had a chance to sit out in the beautiful park and just relax and take a deep breath. The weather was beautiful and I think the oxygen worked wonders for us. We came home and ate pork chops (and applesauce- just kidding- that's a Brady Bunch joke) and baked potatoes and watched one of our favorite shows, John & Kate Plus 8. Kenneth cannot stand Kate, it is funny to listen to him talk about her. I bathed the girls and put them to bed. It has felt like a normal night in our household for the first time since all of this started. I went to the doctor today and got some meds to help me sleep. I've only been getting about 4 hours of sleep a night and I know that is not helping the situation. I hope to get a good night's sleep tonight and then get up before the sun and go to work. I pray God will help me focus at work tomorrow- I need focus and my patients need me to be able to focus. On a side note- for those of you who know me well you know that I really like to watch Roseanne when I can't sleep at night. I think I have seen every episode. Last night as I was laying in bed crying my eyes out, my favorite episode of Roseanne came on and then I ended up laughing hysterically. Here is my favoite line from that episode and if you recongnize it I think you'll laugh too... Darlene is recounting the day's events from the student council election when she comes to the part where she says "Becky cut the cheese!"

Lessons I didn't want to learn

Isn't it funny how much it annoyed you when you were a kid and your parents said things like "It hurts me more than it hurts you," and "I'd take all of this pain from you if I could," and "you'll never understand how much I love you until you have children of your own," and so on and so forth. I could not stand to hear those words from my parents. After all, I was a kid and I knew everything already- and all at the ripe old age of 8. Ugh, now I am eating my words because everything they said, I am now saying. I mean it now just as much as they meant it then. I so badly want to take all of this from Anna. I don't want to see her struggle. I don't want to see her hurt. The world is cruel and I want to put her in bubble and keep her there but I know that would only make her miserable which is what I'm trying to prevent in the first place. Everytime I look at my beautiful baby I wonder why my body wasn't strong enough to protect her. Inside of me was the one place she should have been safe and I wasn't strong enough to protect her. I know that sounds crazy but in my shoes it feels totally rational. On a nice note, our preacher called to check on us this morning. He is so kind.

Our Boarding Passes

You may wonder why I keep referring to Holland. I will get to that later. First I want to start with how this voyage began. Kenneth and I started trying to get pregnant for the second time in May or June of 2006. We knew we would be pregnant in no time and were really excited to bring Carly a baby brother or sister. The months went by and we changed our thinking, maybe we weren't going to be able to have another child of our own, maybe we would adopt. Then, in early April of 2007 we found out we were finally pregnant. The journey had been long but well worth the wait. I had the usual morning sickness- well, maybe not usual, I think it was to excess but I think any puking is excess. I lived on Zofran up until about 20 weeks when I finally started to feel human again. I felt wonderful. Things were finally going my way and I was convinced this was going to be the most wonderful pregnancy ever. At 24 weeks I started having contractions and although it was determined they were probably Braxton-Hicks I was put on bed rest until further notice. I didn't feel the baby move much over the weekend and went in to see Dr. Klein on Monday. My blood pressure was up and I was sent to the hospital for further testing. At the hospital my blood pressures were even higher and I was admitted and here is where the roller coaster began. I was diagnosed with preeclampsia (PE) and told that I would likely be delivering my baby fairly soon and that she and I were both very sick. Luckily I stabilized and was sent home on strict bed rest. I was in and out of the hospital 3 more times for a total of 4 before I was finally admitted for the duration of my pregnancy. I stayed on hospital bed rest for 7 long weeks for a total of 13 weeks of bed rest. During that time I also developed gestational diabetes (GD) and was started on insulin. This was not good news in any situation but especially not in mine because with PE the baby usually needs to be delivered early but with GD the lungs mature later so this was not a good mix. There were stable periods and unstable periods but God was good to us and we made it to 38 weeks. I was scheduled for an amniocentesis to check fetal lung maturity and when they went to do the amnio there was not enough fluid left which was dangerous for the baby and so it was decided that I should be induced. I had 2 hours of labor and then delivered a beautiful 5 lb 15 oz baby girl. We named her Anna. Anna was perfect. There had been talk of possibly having to ship her to a larger facility after birth but again, she defied the odds and appeared healthy as could be. (Or so I thought. I was on a Magnesium drip because of the preeclampsia which makes you kind of out of it. After later reading medical records she was not fine but nothing was done about it other than to chart it.  She had abnormal muscle tone, dusky color hours after delivery, grunting-sign of respiratory distress, and poor eating.). She and I spent 2 more days in the hospital and then we got to go home. Going home was more emotional than I had ever dreamed of. Once I walked in the door I could not stop crying. Between the happiness of finally being home and the flood of post partum hormones, I was a mess. I stayed a mess for quite sometime until I finally decided something was not right and I needed to deal with what was going on. I received much support from preeclampsia.org and those ladies kept me going. Thanks!! Anna remained healthy throughout the winter and flu season which again showed how much of a fighter she was. She stayed tiny though. At her 2 month check up she finally hit 9 lbs and we were so excited. At her 4 month check up she hit 11 lbs. It was at about this time that I started to be concerned because it seemed everybody else's babies were so much bigger and gaining weight so much faster than mine. I know her daddy is skinny but sheesh, she was still wearing newborn clothes at 4 months old. I talked to Dr.Klein about my concerns and he decided it would be best to send us on to a pedi gastroenterologist just to make sure everything was ok. Anna has bad reflux and is allergic to milk and soy so I thought this probably wasn't a bad idea either. We got the appointment and off we went to see Dr. John Baker in Plano. He was wonderful. He gave us a few tips on helping her "bulk up" and changed her reflux meds. Then he said something that in all of my life I do not think I will ever forget. He said that the weight and reflux were problems but that he felt we were dealing with a much bigger issue, he felt that Anna had cerebral palsy and needed to be seen by a neurologist. I wanted to cry for more than 1 reason- partly out of fear and partly because I had feared all along something just wasn't right but I couldn't ever put my finger on it. When he said that it kind of confirmed what I had felt deep down inside for awhile. We left Dr. Baker's office speechless and it was a quiet ride home. Kenneth and I hardly muttered a word. I scheduled an appointment with Dr. Van Miller, the pedi neurologist and then we just had to sit back and wait for a month to pass until our appointment. That was a long month filled with worry, tears, grief, and a whole other laundry list of emotions. Well, I had that list of emotions. Everyone else was still convinced that she was fine. What did I know- after all, I am just her mother (insert bitter tone here.) So the day finally arrived for her appointment. I was nervous but relieved at the same time, I just wanted to find out what we were dealing with and then get on with life. It felt like someone had our lives on pause for a month and I was going crazy. So Anna and I went to see Dr. Miller. We instantly loved him. He was loving, honest, and humble but most of all he was hopeful. After playing with her and putting her through a series of "tests" he decided she does have cerebral palsy. How bad it will be is anybody's best guess- it is too early to tell. He gave us hope that she will do great with therapy though and told me something which I have to keep reminding myself of daily- If we give up hope we are sunk because without hope, you have nothing. He told us we should start her in therapy right away and that maybe within a few years she could overcome most of her disabilities. He told us to celebrate each accomplishment and consider it victory. He told us to look at her individually instead of comparing her to other kids, this would make the victories all that much sweeter. He talked about a mother whose 12 year old daughter has severe CP and that the mother was crying tears of joy when her 12 year old daughter finally responded to her mother's voice. If that mother was comparing that child to other children, how devastating that would be. But to that mother who didn't compare her child to others, that response from her child was like a gold medal at the Olympics. We have to celebrate in this way too. Then we talked of how we should be that way with all children, not just the special ones. I left Dr. Miller's office and I didn't know how to act. I had a million emotions running through my head and they were moving so fast that I couldn't grab on to any one of them long enough to figure out what was going on. I called and told those who knew of the appointment and they all comforted me as best as they could. So if you wonder why I refer to Holland, here is why...

WELCOME TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

So here we are in Holland now and here we must stay. We did not make this choice but we will deal with it because we have no other choice. Kenneth and I are in different places emotionally right now. I am sad and angry. He is still in shock and disbelief. Although we are feeling differently we agree on one thing- that we must remain strong to be the providers for Carly and Anna that we need to be. We know that God has entrusted us with a disabled child for a reason and that he has groomed us our whole lives for this experience. He chose us to be the parents of our children and he believes in us that we are up to the challenge. I do not know what is to come but I know my God is strong enough to get us through it, whatever it is.