Thursday, November 13, 2008
The twins have turned two! I now, and for the next week, have a house with 3 two year olds in it. Kajta turns 3 next week.
Wow, Kelly and Sabrina are two. They had such a wonderful birthday. It was so different than last year. Last year we had plenty of guests but Kelly was still really withdrawn because of her West Syndrome and did not really enjoy it. This year she was just like every other average kid. She was so excited about the cake and the presents. I am going to post videos later today or this week. The girls each got a new baby doll.
Here is Kelly opening hers. Sabrina got an identical one too, of course.
They could not wait to get them out of the boxes.
They both said "Baby!!"
and they both
kissed their babies.
They also got a Dora video. Kelly about flipped out because she loves Dora. Then they got plastic dishes.
These were a necessity because we had one small set.
and they all kept fighting over them.
Same thing with the baby dolls. We had one large baby and they all fought over it. Now they each have their own. The dolls were inexpensive. I went for the dolls that require imagination. They do not talk or poop. I like that much better.
The twins look so cute with their matching shirts, a gift from Michael's friend Julia and with their matching hats. They are twins, after all. The girls had such a good time and Kelly did a great job grabbing the paper and pulling it off.
Oma and Opa Meyer came to visit and celebrate the double birthday.
Here is Oma holding Baby Sarah.
Nanny Sarah gave the girls both play cellphones. Again, I was so impressed with Kelly.
She knew just what it was and both she and Sabrina started talking away on their phones together like professionals!!!
Next they will want an I-Phone.
Nanny Sarah's parents in Canada sent the girls gifts too. Now we have several really cool Disney Singalong DVDs.
This is a super addition to our house.
Every single one of my five lovely flowers loves to sing.
I think they get this from me and from my Mother too.
Thank you to the Nielsen family in Canada!
I did not bake the birthday cakes.
Somehow, I just do not seem to have enough time to do everything.
I bought frozen ones in the store. They turned out really cute though.
Everyone wore a hat, even Baby Sarah.
Oma and Opa gave us money and we bought the girls a Princess Tent with it. We let Katja unwrap that because she is still too young to get the idea that only the birthay person gets a present.
Everyone had to get in on the act. Even big Sister Sam wanted to get inside of the tent.
Wait, who is that? Is that Oma's behind sticking out of the tent?
Once Oma figured out that she did not fit into the Princess tent, the girls had it all to themselves. We put Kelly into her Bumbo chair and fun was had by all!
Friday, October 31, 2008
Well, life is still crazy but it is good again. We are out of danger and I can stop and smell the diapers again. MMMM smells good in here!!
I sent everyone an email update but I have not had time to post an update because the girls have been playing sick for the last two weeks. All five have had a fever and they have been taking turns at it. One would be sick for 2 or 3 days and then the next one would take their turn. With five of them that means about two weeks worth of fevers. It is over and now we just have runny noses!!
Well, we have been paying off the medical debt and we are finally out of danger. The nursing firm is payed off and even some of the smaller medical bills. We bought Kelly a bumbo baby feeding chair and I am going to order her a creepster crawler today. So, thanks to you guys, life is good here again. Thank you all for your prayers and for your donations. This was a terrible time in our lives and now it is over. I received so many wonderful, heartfelt donations of all sizes. Each one was special and appreciated. Very, very much. I hope now that I can get our lives back on track and start living like a normal family.
We are thinking about starting an online business of some sort. Maybe selling smaller special needs equipment here in Germany. There are many items from America that would be a benefit to the special needs kids here. It is amazing just what we do NOT have here in Germany. We also need to find a way to earn more money so that we can assure that Kelly receives all the therapy that she needs. We have to face the fact that insurance companies are just out there to make money (I quote my brother Jerry here) and they are not going to pay for everything. There will be more surgeries and things they do not completely cover. Michael and I want to find a way to get ahead of the game so that we can provide all the children with what they need and never be in the situation where we are afraid of losing the house.
But, at the moment, Life is Good again. We are still wearing cloth diapers. I am still counting my pennies carefully. BUT we are actually able to stop and enjoy and smell those diapers.
Tuesday, October 7, 2008
First, you need a bunch of diapers with this many bottoms. We go through 25-30 a day!! That is a lot of tee tee!! Remember, my goal is to be able to wash them but hang them up to dry so that we can save money. In order to do that I had to find used diapers enough for two days worth of use. Then, I wash a load at night, hang them up, use the second batch on the kiddos during the day and allow the previous days diapers to dry hanging. In the winter, when the cellar is really cold, we will have to use the heating room or lay them on the heaters in the house. Germany, at least most of Germany, does not have central heating. We have these heaters that are up against the wall. The oil heats up water down in the celler which then runs up through the pipes and heats the rooms. The price of oil really kicks our bottomss too. We may have to have 3 sets of diapers to be able to do it without using the dryer.
Second, there are so many varities of cloth diapers on the market. There are some really cool brands out there. Most are way to expensive for what we are trying to do here. We are using a brand called popolini. They are really easy to use and one size fits all the bottoms. That is a major plus for me. What I really wish I could afford are the ones called Bum Genius or Fuzzi Bunz. They are a complete diaper with the liner inserted into the diaper and the cover is waterproof. These are very much like disposable diapers. You do not need the plastic cover with them and one size fits all again. They have adjusters. Unfortunately, they are super expensive. I bought our popolini on an ebay auction and got enough for one child. That is 18 diapers, absorbent liners, flushable paper liners that you use to catch the poop, 2 plastic covers. These parents are selling them on ebay as a complete set. I am hoping to resell mine when we are done.
Third, not everyone in the family is as excited about this experiment as I am. Michael is clueless about how to put the diapers on. The rest of the crew is being patient with my experiement, even though it can be kind of yucky when they get really wet and then also have a nice big poop. That is why those paper liners are great. With Samantha, 15 years ago, we did not have those and then we had to swish the diaper in the toliet. No need for that now!! I am greatful that all the people who help us out during the day are participating in the great diaper experiment and not complaining. I think everyone understands I am just trying to save money and save the house.
Well, baby Sarah looks a bit wet. I better get on it and change that diaper. I do miss the absorbency of a good old pair of Pampers!
Friday, October 3, 2008
· We have received many great donations from people all over the US, including people I have never met. This has lifted my spirits up so much and given me hope. I received donations from strangers, my uncle, my aunt and her mother, my cousin, old friends, an old boss, old students from LCU, another mom from the CP website, and many other people who just heard about our situation from the website. I am trying to email everyone individually but it will take me a few days. I am currently sharing the computer with my teenage daughter and with the other four girls around, there is not much time.
· I received one email asking why we are asking for our donations to be sent to an American address and account. That is because I still do my banking in America and it would be easier for us to get the money from my debit card here than have American friends trying to send things to Germany.
· Another friend asked if it was too late to send donations. NO, it is not too late.
· We have approached the firm that provided the nursing services last year and given them what we have collected so far. We still do not have the complete amount to pay off the bill but I am hoping this will buy us a few weeks time.
· People have asked me why we do not just get a lawyer and sue the insurance company. There are several reasons we are looking at.
1. The company found a nice little loophole and said they do not have to provide the type of care we received while I was pregnant. There are different words for different kinds of care given to sick people in the German insurance language. They told us that what we received was not what they covered in the insurance. Then they pointed to the city and told us to contact them. The city said the insurance should pay for it and we needed to work on their interpretation of the wording. This game of pointing fingers went on during the whole pregnancy.
2. We cannot bite the hand that provides for Kelly. We just checked with a social worker familiar with the law and they think that it would be very difficult to sue the insurance company. The other problem would be that if we attack the insurance company, and we later need them to approve something for Kelly, then we have bitten the hand that feeds us and may be denied for something important.
3. So, we would have to sue the city of Barsinghausen. We could do that and still may but if we do not pay this bill ASAP, it will not matter because we will lose everything anyway.
· I know many, many families in the US with children who suffer from CP or other medical conditions who have the same problems. Medical bills that the insurance will not pay. Insurance companies are evil. The difference is that the families in the US can ignore their bills for years and no one comes and takes their house or job away. I live in a foreign country where things are different. In America the other parents with CP children have had fundraisers done for them in their hometowns to raise money for bills, or new therapy or equipment that the insurance will not pay. People give them money and participate in the fundraiser and never once tell the people that they should just get a lawyer.
· So why not do a fundraiser here in Germany? Those are not common at all here. People give once a year around Christmas to big charity foundations. The social worker we are speaking with is trying to get us funding through one of these foundations. We will apply for something next week.
Please believe me that we are trying everything we possibly can to take care of this situation. I have thought about doing some type of craft and selling it on the internet. It is all a matter of timing and funding. At the moment we have done what we can for the short term and it is a matter of waiting and seeing what happens. Please keep us in your thoughts and prayers.
Janette and the Meyer Family
Friday, September 19, 2008
I am trying to find a way to save money. One thing way we keep throwing money in the trash, literally, is with our daily diaper use. We use 6 diapers per day, per child. With four children, that diaper use adds up and it all gets thrown in the garbage.
So…Okay, maybe I am nuts but I am changing the four little ones all over to cloth diapers. Yes, I will have four children in cloth diapers. Why am I doing this insane act? Do I want to live with the smell of wet diapers in a pail? Four sets of diapers? Well, that is something I am going to find out.
Katja needs training panties. She knows how to use the potty, but she is in a lazy mode and does not always make it to the potty. With everything that is going on here, I have not been able to focus time and remind her every so often. She needs to have training panties on, instead of a diaper, which will be uncomfortable and alert her that she is wet. So, the cloth diapers here look like training panties with Velcro. I will be using the largest size on Katja, which should speed up her toilet training.
The plan is for us to find used diapers and start the kids out next week. Cloth diapers are very expensive now. There are so many varieties here.
Here is our plan.
1. Not buy the diapers new. They are really expensive.
2. Bid on used diapers on ebay.
3. Ask the neighbors and the midwife if they have any or know of anyone who has old cloth diapers they do not use anymore.
4. Put diapers on all of the children during the day. I might put them on the older ones at night. They are very absorbent.
5. Use a paper lining product that you can get cheap, to catch the BM or poop so it is easier to dispose of. I swished them out in the potty when I had my first daughter in diapers and that was gross. I do not want to have to do that now, with four little bottoms at once.
6. Put the used diapers in a pail to soak with detergent in the water.
7. Wash the diapers every other day on 60°. This is a European temperature. They have a temperature that is 95°, which is close to boiling. It would get them cleaner but it would cost us more money. I plan to use the 60° first and then if that is not enough, I will move on to the higher temperature. The German washing machine I am using is awesome and will probably get everything out on 60°.
8. Hang the diapers up to dry. I would use our dryer, but again I am trying to save the family money. These diapers are thick so they will take longer to dry if I hang them up. We have a room in our basement where I do the laundry. The cellar does not get warm ever, so it takes longer to hang dry clothes. We also have a room in the cellar where the heating unit is located. This room is warm in the winter. I will be hanging the diapers up in this room. I will be timing how long it takes to dry them in this room. I am washing a pair today and want to see how long it takes to dry. On sunny days, which are rare in the winter here, I will hang them up outside.
9. If the children get wet and have trouble sleeping through the night, God forbid, I will put one disposable diaper on them at night.
This sounds like a bunch of work, and it will be. The idea is that I am hopefully going to save 200 Euros a month by cutting back on our diaper bill.
I will keep everyone updated.
Tuesday, September 9, 2008
WE NEED HELP!
This is an emergency posting asking for help. This past year, while I was pregnant with baby Sarah, several things occurred that have now put us in a real state of jeopardy.
These things were:
1. I became pregnant with Sarah in August
2. I began to bleed after lifting Kelly and taking her to a doctor appointment
3. I was put on bedrest for the remainder of the pregnancy
4. I was told not to pick up my children, do housework, or I would lose the baby
So, because Katja was not even 2 and the twins not even a year old, we had to have in-house care. The doctor reassured us this was something that the insurance had to pay. Kelly, who was the sickest of the twins, was not developing and becoming mobile and needed nursing care and I needed in-home assistance while Michael was at work.
Then in September of last year, Kelly was diagnosed with West Syndrome and I stayed with her in the hospital for a week while they tried to get her seizures under control. The nursing staff then took on more hours. Again, we had a prescription at this point from my Gynaecologist and the Pediatrician stating we were a family in need and that we required care for the 3 children under 2 years of age. Michael and I were sure things would work out.
The insurance DID NOT PAY. They simply told us that it was the responsibility of the city. The city then pointed their fingers back at the insurance…and this dance went on for 7 months. During this time we had to keep someone working in the house and caring for Kelly so the nursing company we hired kept billing us.
In January we got the first diagnosis of Cerebral Palsy for Kelly and then we started to battle the insurance for therapy, and medical equipment. Do not get me wrong, they do cover the bare basics for that. What shocks me about this the most is that they knew from this diagnosis that we needed help in the house with the children but no one helped.
We contacted the local churches and they had no program to help people in need. The nurses were even calling people because they knew we were getting further in debt and that the insurance was not paying.
To make the point even worse, I also have a back problem and will need to find someone to help carry the children until it is repaired or grows stronger. On advice from the doctor, we found an AuPair to help us. Again, the insurance does not cover this cost either. Even though Kelly is non-mobile and requires more care than the other children.
Now, we have to pay off this debt, or we lose everything. I am an American but I live in Germany and therefore I have to abide by the German laws. There are laws in Germany regarding debt. My husband works for the German government in the IRS and he is not allowed by law to be in debt. If we do not pay off this debt, Michael will lose his job.
So, you find us at a precarious point in our lives. We have a brand new baby and face the possibility of losing first our car, then our house and on top of everything, Michaels job.
We have tried to pursue this matter and force the insurance or the city to pay but it has been to no avail. Now we have to try to save everything before we are sitting on the street with five children.
As I write this I am afraid of stating the truth that it has really come to this point. I am in a country far away from family and friends. I am doing the only thing I can do at this point and that is to ask for your help. We are asking for donations to pay off this debt. We owe over $8,000 backwards for this period. Michael told me yesterday that we have to have $4000 by next week. He has been keeping this from me while I was pregnant and now while the baby is small, hoping that he would find a way. Now we have to ask for help.
My father’s address in Texas is listed on the side of this post. We are taking checks payable to Janette Meyer. We are checking with the bank at the moment to see if we can get an account started in the name of Kelly. I will also be setting up a Paypal button that you can donate with a credit card. I am speaking with someone today about how to make this a tax-deductible contribution for you. We will find out soon how to write you a receipt for your tax records.
I cannot explain how afraid I am at the moment. I am trying to act positive and upbeat around my children so that they do not know what is going on. They feel something is not right.
Even a small donation would help us. Please share this post with your friends, co-workers and any you know. We really need help.
Mommy to Five Girls
Thursday, September 4, 2008
I did this because many people want to read about all of my daughters on here and I thought Kelly and her condition, stuggles and triumphs needed their very own page.
I just posted a post about the financial dilema we find ourselves in now because of several bills the insurance would not pay. I apologize in advance that it is a bit depressing but it is 4 in the morning here and I cannot sleep because of the stress.
Anyway, check out Kelly's brand new blog!
Sunday, August 31, 2008
beside me with me holding on to her and I just happened to let go and
she stayed up!! And I looked at her and could not believe it. And then
I yelled at the AuPair to look and my oldest daughter and we all just
stared in disbelief. It was the coolest thing ever. She used her hand
to prop her and support her and she sat there alone for about a
minute. That is a good start, don't ya think!! WHOOO HOOO
For those of you that do not understand what a monumental issue this is, let me explain a bit more. Kelly has spastic quadrapelegic Cerebral Palsy. She has high tone in her arms and legs and low tone in her head, neck and trunk. This means it was an accomplishment when she started holding her head up back in January at 14 months of age. I was really not sure if she would ever have trunk control but that muscle has been developing slowly over the last half year. We were loaned a Rabbit StanderR82 and I think that helped her too. Her doctor feels like she is doing so well that she does not need a vest or corset to help her with her trunk muscles. Many kids with CP that have low tone in their trunk must wear a support system like this and many do not sit up unassisted. I am hoping this is the beginning of big things for Kelly.
When we put baby Sarah on the floor with her, she gets really excited and tries to crawl toward her. She is moving the legs correctly but has not gotten the arms going right yet. That is why the trunk strength is also so important. She needs that body strength to get herself propelled forward. We are thrilled. I am now actually feeling hopeful and believing that she may some day walk!! All the therapy, tears, prayers and pain are paying off.
Way to go Kelly Jelly Belly!!!
Friday, August 29, 2008
Friday, August 22, 2008
So, we get to this blogging idea of mine. I want to keep up with the 5 girls is enough (yes, I know the grammar sounds off, it is supposed to be a joke like 8 is enough) website and devote it to my family and especially our battle against the all encompassing, evil Cerebral Palsy and give hope and inspiration to others. I also want to do that with my other blog 5 girls on a budget for the same reasons except to highlight our journey on an extremely tight budget and again give inspiration and ideas to others. But how on earth can I possibly sit down and read emails or write a blog for goodness sake when I do not even eat regularly or shower at this point?? I know it will get a bit better because baby Sarah will eventually sleep through the night. But either way, I have come to an adult decision. I have to get up before the family does if I want to have one moment of peace to think and dream and write. I know this is not a new idea, many women have done it and I have read about it and heard about it for years, but I had no idea how true it was going to be in my life. For the sake of my sanity, I need to have alone time so that I am strong enough to give all the love and things to my family that each of the 6 individual people need. I thought about staying up late, after the kids are in bed, but then my husband is awake and he wants his husband time. That is fair, he needs me too. But I need me too. So, I begin my journey as an early riser. Well, at least I did it today. We will see about tomorrow. I think it is going to be absolutely the only way that I can keep my sanity, or at least a semblance of my sanity!
Monday, August 11, 2008
She and I cuddled and cooed and enjoyed being together alone for the first time in her life and one of very few times.
With four other sisters, it is almost impossible to get alone time with Momma (ask Papa). But, Momma got homesick and after 3 days, they would have kept me up to 5, I asked to be discharged so I could go home and see the other little girls.
Katja came to the hospital with Papa to make sure I did not forget something important, like Baby Sarah!!!
Kelly was awake from naptime when we got home. The look on her face was priceless. Like Katja did the first time, Kelly lit up very bright. Her eyes were very wide and her mouth was open as if to say “Wow, what a wonderful thing that is. Is it mine?” She wanted to hold the baby. Kelly has CP and does not have that much control of her hands but I laid baby Sarah beside her on the large beanbag chair. Kelly very gently touched Sarah’s face. She knew exactly what to do. I was so proud of her. And then Kelly did the most amazing thing. She said very clearly, “Sarah.” Well, that took care of any worries I might have had about Kelly having speech difficulties. She said Sarah more clearly than some adults do. My father-in-law was still of the mind that Kelly was not very smart. He had even said that he did not think Kelly would even notice the new baby. I guess she proved him wrong!!
Sabrina got up from naptime and was walking around in my room. I went up to her and told her I had something to show her. She saw the baby in my arms and saw that it was moving! She took a step back and gave a gasp. I think it scared her a bit. She was not really sure what to think. It took her several days to warm up to the baby. Now we cannot keep her away!
So, we got home just fine and the next day Erika and Andreas hit the road home. They were very happy to be going home. I was very sad to see them leave. But luckily for us, Nanny Sarah was on her way from Canada and would arrive May 1st. That is a story for another post.
Sunday, August 10, 2008
So I will begin with one of the most important events we have experienced this year, the birth of daughter number 5.
Introducing Sarah Jessica Meyer, no not Parker!! She does not have a copy write.
Sarah was born into the Meyer girls club on April 20, 2008 during the 37th week of pregnancy. We decided to induce the labor because of my gestational diabetes. Glad we did because she was a bigun (Texan for big one). She weighed in at over 3560 grams which is 7 pounds 8 ounces. She also had a bigger head circumference than the other kiddos, ouch. Sarah was born at the same hospital as the rest of the last 4 girls, Hannover’s University Hospital or MHH. It was like going home and being among friends because I lived there for 10 weeks as I was pregnant with the twins. The nurses, midwives and doctors all know me and my children by name. That made it nice. On a side note, the midwife in charge of my birth made the experience terrible but in an effort to let things go, I will not go into detail. I thought about writing a letter and complaining because she refused to give me the second dose of my epidural medicine, even though the doctor said she could and should. And even though I have a recorded back problem. Needless to say, I have never had that type of pain and that is from an experienced mother who has now done the birth thing this way: first time with epidural (perfect birth), second no epidural because it was too late but my back was not as bad as it is now and I had a shot of something, third experience was with a C-Section and then lastly I did this half and half thing where the epidural wore off. I know some of you think, “OH buck it up, it was just normal childbirth pain!” You that say that have no idea what you are talking about. I have a problem with the vertebrae in my spine and will need surgery eventually. I take some form of Morphine regularly and needed the last dose to keep the epidural going. I had done the childbirth thing the natural way once before and wanted my last experience to be as wonderful as my first but the mighty, evil midwife took care of that. No, I am not holding grudges over it, I am just fine. Oh, and she also refused to give me an episiotomy, which I had had with the other births. She just did not think it was necessary even though Sarah was a big baby with a big head…errrrrr.
Let me tell you about Sarah. She is so pretty. She has dark hair, blue eyes (I know all anglo babies have them but in our case, she will probably keep them) like 3 of her older sisters, and these lovely, long eyelashes that curl up so pretty. I think she got the eyelashes from my mother who told a story that she had long, curling eyelashes till her older sister, who was jealous, cut them off at naptime one day.
The first two sisters to meet her were Samantha and Katja.
Let me tell you, Katja was thrilled. She wanted to take her home right away. She was not concerned at all about Momma, just baby Sarah. She almost did not leave the hospital room because she wanted to be sure that we were not going to forget Sarah and that she would get to come home with us.
Then Katja really started to check Baby Sarah out...
"Wow, Momma, she is a real baby! She is not in your tummy anymore!!"
Then finally, Katja allowed Samantha to hold baby Sarah. She supervised the whole thing, in case Samantha dropped her baby sister.
Friday, July 25, 2008
HOURS: You will be 'on call' 24 hours a day, 385 days a year, especially for psychotherapeutic and nursing services. But your regular work will take between 50 and 100 hours per week1, depending on: age, health and number of children or disabled people in household; standards of work demanded by employer; size and condition of house.
PAYMENT: An allowance is available, known as 'housekeeping money' when provided by employer and 'family allowance' or 'child benefit' when provided by the State. This money is intended to cover essential expenses such as cleaning utensils and food. There is no payment for your labour as housewife. Three out of four housewives have no money of their own and were described as 'financially battered' in a 1978 report in the UK. In 1975, with inflation at 26 per cent, only 25 per cent of UK housewives received an increase in housekeeping money from their employers. Seventy per cent of husbands in the UK, 40 per cent in West Germany and 30 per cent in Switzerland do not tell their wives what they earn.
HOLIDAYS: Your duties will be eased if your holiday is taken in a hotel, but you will often be expected simply to do your normal work in strange surroundings while other household members enjoy their leisure. Research in Germany found only 21 per cent of housewives had a holiday the previous year, compared with 86 per cent of employers (husbands).
SATISFACTION: You may find your duties even more monotonous, fragmented and under continuous time pressure than assembly-line workers6. Seventy per cent of housewives in one study said they were 'very' or 'severely' dissatisfied with the nature of their work. Two-thirds of working-class housewives and three quarters of middle-class housewives would like an extra job outside the home - largely because of frustration with their work in the home.
WORK HAZARDS: You will be 154 per cent more likely to die of cancer than women in paid employment. Between 40 and 80 per cent of housewives in Bracknell New Town, UK, have an alcohol problem8. One in five Aotearoan housewives seek help for psychiatric symptoms - more than any other occupational group - and Australian women consume 70 per cent of all minor tranquilizers in the country. Insomnia, palpitations, headaches, dizziness, nightmares and anxiety ('housewives' syndrome') are much more common among housewives than women in paid employment.
JOB SECURITY: Your job will be continuously and increasingly threatened by divorce. In the US one in six marriages ended in divorce in 1940. Today two out of every three marriages are predicted to end in divorce'. One year after divorce the divorced housewife's standard of living drops by 73 percent, while that of her ex-employer rises by 42 per cent.
REDUNDANCY PAYMENTS: If made redundant (by divorce) you will only have a one-in-seven chance of being awarded alimony (money for your personal support) in the US. Though 60 per cent of redundant housewives have children, 60 per cent of ex-employers contribute no money at all to the upkeep of those children. Two-thirds of ex-employers are ordered (by divorce courts) to pay less in support of their children than they owe in monthly car repayments. Nearly all keep up their car payments but over half are delinquent with child support. Unpaid child support totals $4 billion a year in the US.
FRINGE BENEFITS: Your board and lodgings will usually be provided, but you will normally be expected to share a bedroom (and bed) with your employer.
Saturday, July 12, 2008
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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.
Wednesday, July 9, 2008
* You compare ER's instead of grocery stores.
* You compare your child's oxygen saturations.
* You view toys as "therapy".
* You don't take a new day for granted.
* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
* The clothes your infant wore last fall still fit her this fall.
* Everything is an educational opportunity instead of just having plain old fun.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
* You also don't mind if your child goes through the house tooting a tin whistle.
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
* You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
* Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else
will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* When potty training is complete, you take out a full page public notice in the Washington Post.
* When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old just started walking last week.
* Her medical file is several inches thick and growing.
* You have a new belief.....that angels live with us on earth.
Wednesday, July 2, 2008
We had our followup appointment last week (see Great Appointment post). I was being really upbeat when I posted the results. But let me be honest. It stinks. You know, Kelly started having her epilepsy problem last summer. That is when her development started to slow down. At the time the therapists and doctors said that she was probably just behind due to prematurity, then she was further behind because of the West Syndrome. All of these things, I could fix. I could change. Give her a pill, take her to therapy, say a prayer. I could do just what a parent is intended to do...take care of and fix the boo boo. Now, after this last appointment, they are confirming once again what they have hinted at since January, that Kelly has Cerebral Palsy. I know, I know that it does not go away. I guess that some small part of my soul just hoped and prayed that when we went in this time to see the doctor, he would say, "Wow, Golly Gee (in German of course), I made a mistake. Kelly is just fine, she is just still developmentally behind. She does not have this bad thing called Cerebral Palsy that has no cure. She will not be disabled and picked on by other humans. She will be a perfectly normal twin to her sister Sabrina. She will walk and she will run and she will play hide and seek and she will win." But, the doctor did not say that. And I am having to deal with the fact he will never say that. Kelly cannot be rid of Cerebral Palsy (bad word, bad, bad word) ever.
Now, she had made improvements. But I cannot cure my baby. A pill and a bandaid will not heal this wound. That makes me feel I have failed as a Mom.
I was in that hospital bed for 10 weeks, on my back, with my butt high up in the air, speaking a foreign language, watching crappy television, separated from my still baby daughter Katja (10 mos old at the time). Why, could it not have turned out okay?
Believe me, I am grateful that we do not have as many problems as other preemature children. I know we are lucky. I just want Kelly to be completely lucky. I want her to be completely normal. I do not want to have to add the word Cerebral Palsy to my daily vocabulary. It has taken over our lives. I live and breathe handicapped equipment and therapy appointments. Those are the only band-aids I have. Well, that is why they call blogging therapy. I got that out of my system. I do not feel better but at least I got that out in the open. I have to go and get the children up from their nap. Duty calls!!
Tuesday, June 24, 2008
Thursday, June 19, 2008
I am really behind in the bloggin thing. I want to catch everyone up and I promise to try and do it this weekend. Just a quick note about medical updates…
Kelly and I had a big two days here with two very big appointments.
First we had our EEG because Kelly has West Syndrome (Infantile Spasms) and spoke to the doctors in a meeting afterwards. Good news!! We had our second normal EEG. We are excited. We will stay on the medication (which for us has been okay with the side effects anyway, nothing too serious) and have another EEG in 6 months. The Neurologist said that Kellys head measurement is normal and her weight and size are normal. Funny though that she is so much skinnier than her twin. Does that make Sabrina a chubby giant?
Then we had the appointment with the folks that coordinate all the handicapped services. Their professionals came in and evaluated Kelly and said that she is doing super. Her arms are much stiffer than her legs but she is not stiff all of the time and when she relaxes she does super things with her hands. They feel like we can work with this and that she can learn to overcome it. She turned for the doctor from her back almost all the way to her tummy (he had some neat toys). He was very impressed by her speaking and she really showed off for him and used a couple words I had not heard her say before. Of course these are in a very soft voice due to the low tone trunk but we are excited anyway. We are now scheduled to see the Speech Therapists.
I will get more specific in a later post but to keep it short…We will go back and test drive the equipment I want. They agreed with me that the equipment I want is a good choice. Thank you to all the CP Moms for discussing your equipment with me. I did my research from that and went in with a darn powerpoint presentation!!!
Again, I will discuss our equipment and therapy ideas tomorrow or this weekend. I am off to bed.
Mom to Kelly and the other fabulous 4.
Saturday, April 12, 2008
Other things that are rolling around in our house include me. I am still as big as a condo and rollin around or waddlin around waiting for baby girl number 5. Tomorrow is Samantha's big confirmation day and party. That is a special thing here in Germany for both Protestants and Catholics. There is a formal church service and then the family throws a party for guests afterwards. Did I mention I am still pregnant?? I am doing this 9 months pregnant!! Oh well, I have nice friends here and they will help me out. On a side note, I wonder what people will think about and how they will react to Kelly. It is strange but some people do not know what to say or do or how to act around her. They pay a bunch of attention to Sabrina and Katja but are very careful around Kelly. I think they are worried they will hurt her or offend us. Anyway, I hope they will learn that she is just a happy baby and loves to have attention just like her sisters. She is not fragile, just a bit stiff in her muscle tone but loves to be picked up and talked to. I am also going to have to get used to people and understanding that it is okay for them to be uncomfortable.
Wish us luck tomorrow!!
Monday, March 31, 2008
Kelly has made great progress. She can hold her head up for most of the day. She does not like being on her tummy so she has been able to flip to her back for a few months. It is not a very fluid motion at all because her legs are so stiff she basically flops over.
The ability to turn from her back to her stomach takes much more muscle control and is much more difficult. There was a big chance she might never learn to do it. But she did it, she did it!! She only did it once but it was a definite turn to her stomach to reach something, me. Her older sister, Katja age 2, was so excited that she spent the next few minutes flipping Kelly over and over and saying "Turn Kelly".
I called her proud Papa at work to tell him and Grandpa Taylor in Texas. I am going to call the therapists this evening. I plan to spend time with her this afternoon working on the skill further.
Yeah for Kelly.
Friday, March 28, 2008
Those of you that know me personally, know that I lost my mom a few days after daughter number two, Katja, was born in 2005. It was a real shock to us and really difficult for me to deal with. I think I have missed her even more profoundly since I gave birth 10 weeks prematurely to my twin daughters, Kelly and Sabrina in 2006. My mom had suffered a few serious health problems in her last few years but she always kept a positive and cheery outlook. She had a saying, "You gotta play the hand you were dealt." I have been thinking about her and about the cards I have been dealt a bunch over the last year with the twins. Kelly was finally given the lable of CP in December. That was one heck of a card to be dealt. I am learning how to play this game of poker every day. Kelly is much like my mom was. She is always positive, good natured and a happy baby. My mom would have been so proud. I am glad I have the opportunity to share her and my other lovely daughters with you on this blog.