Do You Like Change?

Our mornings still begin like this....Lil' Miss Maizie is sound asleep under that blanket after the usual morning CVS episode. We are frustrated and at the same time this "monster" illness has become a part of our routine...a part of our lives. A combination of intense belly pain and head pain over takes her.

I am praying she out grows this soon. Most children do. And then again Maizie is not like most children. It has been a little over a year since our trip to the Cleveland Clinic in Ohio. It is very possible we will be going there again.

The picture below is how Maizie looks by six at night. We went out to dinner with Rod and Rhonda and she was able to see her little friend Madelyn. Madelyn and Maizie were discussing adoption together. Since they are both adopted they tend to bring this up whenever they see one another. Maizie asked me what her birth mother did to take care of her when she was a baby. I explained that her birth mother ate healthy foods, listened to country music (obviously this is where Maizie gets her love of Dolly Parton and all things country) and prayed for her and us...a lot. Madelyn likes to point out that she is from the Philippines and Maizie is not. Sometimes it seems there is a little competition between them on who has the most unique birth story. The two of them never cease to amaze me when they bring up adoption.

Maizie has been loving her new MP3 player. She wears the big ol' headphones because they, "feel good". It is quite entertaining listening to her sing as I drive. I especially like the quiet time or being able to listen to my own music.
I sure do appreciate the comments about my new hair do. It has taken some major adjustment. Every time I look in the mirror I am like, "Gadz!? Where is my hair?" It looks quite different to me. I don't know how long I will keep it like this but for now it is fun having a new style to work on in the mornings.

I am all for anything different right now. Yes, it totally clashes with what Maizie wants. That is the struggle. I like changes. The way our day is laid out right now about sends me over the edge sometimes.

I enjoy new challenges, new places, rearranging furniture and spur of the moment get togethers. These things don't seem to go with Maizie's personality very well. If anything..my need for change and the fact that I don't fear it has probably come in handy in dealing with Maizie's ongoing and ever changing health challenges. Accepting change has come in handy when it comes to her education techniques, therapies and social struggles. I am much more willing to move on and try something else. I figure God is trying to teach me patience and how to enjoy the tiny...the subtle, more dazlious moments in my life.

Does your child with special needs like change? Do you?

Insurance and A Not So Good Anniversary Date...of Sorts

Today we went to see the neurologist...again. Maizie begins weaning off of Elavil which has brought no relief and is slowly beginning Topomax. Meanwhile, we are weaning her off of the seizure medication, Lamictal which she has been on for a couple years. I have four different medication sheets the neurologist created for adding and weaning the medications. The Kytril and Zofran needed to be refilled also. Kytril is expensive. Very expensive. Once again, we are thankful for our insurance. Kytril costs over a thousand dollars for a month. It is costing us a mere ten bucks. One thing I can say for certain...we get our money's worth out of what we pay for our insurance coverage.

Our neurologist is out of network so Joe is having to mess around with the insurance company. Since we began seeing this new neurologist we owe close to seven grand. This is just since January. Doctors sure do charge a lot for hospital visits. Ugh.

I am so thankful for Joe handling the insurance stuff. I handled it for the first eight years of Maizie's life and about cracked up. Of course back then our insurance did not cover the majority of her medications or doctor visits because it was always classified under mental health care...of which we had no coverage. I had to fight almost every claim we sent in. Some we won and others we did not. I am convinced that some insurance companies know they can wear you down and count on the fact that you will eventually give up fighting certain claims.

We tried to sue our first insurance company and a hospital once for refusal of coverage. That was a waste of time. The hospital we had to use back then had some sort of agreement with the attorneys in the region making it against their best interest to sue for us. We would have had to go to Chicago to find a lawyer.

You reach a point where you have to decide what fights are worth the effort and money. Considering what little energy Joe and I had back then we decided to grit our teeth and pay the hospital bill that insurance refused to cover. I have never been so angry writing out a check in my life. What made it worse was this particular hospitalization was a time when Maizie was very sick and behaviorally out of control. She was vomiting constantly, rarely slept and was emotionally out of control. The nursing staff accused us of dropping Maizie off so we could get a free vacation. Can you imagine? I made a point to stop in and check on Maizie all the time. We were not allowed to see her all the time since at that time she was in a psych hospital. The doctor visited all the time too. At one point the doctor showed up in the late evening and found out that they had refused to give Maizie her bedtime medications and were instead using a holding technique to "force" Maizie to sleep. This technique involved a male nurse holding her down until she cried herself to sleep. Instead, she just vomited all over her self and became more out of control and fearful.

The next day the doctor told me this and I immediately went to the hospital to take her home. We did not want her there in the first place but it seemed like we had no choice and the doctor was assuring us she needed to be observed and we needed to sleep. Needless to say neither of us slept, we just cried. The hospital staff wanted her to stay and tried refusing her release. Finally, we took her home. I called a few days later to request a copy of her file. Can you believe it went missing? No record of her having ever been there. Except for the bill, of course...oh and the sheet we signed promising we would pay if our insurance refused coverage. Hmmm....possibly that is where my mistrust of hospitals began. This is one reason we do not leave Maizie alone...ever...while in the hospital. Granted, psych hospitals are different. Hopefully we would never need to do that again.

Soon we are coming up on a anniversary date I rather not remember. The day our adoption agency removed Maizie from our home and placed her in foster care due to a adoption reversal threat. The birth father wanted her back and suddenly we had no say in the placement of our daughter to be. We did manage to secure a lawyer for this nightmarish experience. I had called several lawyers and all refused to take our case except one. I heard this statement a lot, "Unless the birth father is the devil himself you don't stand a chance at getting her back." We surrendered the situation to God. We have love for both birth parents. Maizie's safety was always our first concern. We insisted that he be investigated and a court appointed lawyer represent our daughter. This lawyer was known to be a 'barracuda' when it came to representing children. She stood up in court and said, "Over my dead body will this child ever be placed in the hands of this man."

The judge listened and within a few hours we were called and asked if we wanted to adopt Maizie. At that point she had been in foster care for three months and we were unable to see her. Needless to say we were thrilled.

Our adoption story is a lot more complicated than I even describe here. It was a long, stressful devastating and amazing experience all rolled into one.

I am not one to focus on a date and make that day miserable for the rest of my life. But, the date this happened is one I think of every day of my life.

Joe and I talk about adopting again and this experience always comes up. It is hard not to fear a similar situation. We both feel like it was a miracle we survived. And by a miracle I do feel without a doubt that God was the one to pull us through. When we surrendered and put Maizie into God's hands I felt such amazing relief. I knew that whatever would happen I would survive and Maizie would be where she was meant to be. Some may think that is easy for me to say now since it worked out in our favor. Maybe it does make it easier? Even still...not a day goes by where I don't put Maizie in God's hands. He created her and knows what we need to do to help her. He pushes us to move forward and keep working. I find comfort in that. I feel stronger for that. It works. If you don't believe it I dare you to give prayer a try. If not...that is cool too. We each come to things at our own time and in our own way. If anyone is teaching me that it is my daughter...Maizie.

Remembering Waiting For Our Baby

This blurb is from my journal back in the day before I knew about blogging. Since we are into the month of December I always remember waiting for Maizie to be born and how excited I was. It seems like such a long time ago. Tonight Maizie had her first sleep over at a friend's house. She is growing up! I feel happy and sad all at the same time. Before she left she said, "I will miss you while I am gone Momma." So sweet! Joe looks so young in this photo. Here is the excerpt from my journal......
On December 9th our adoption counselor called and left a message that she knew the sex of the baby. We played phone tag and I thought I was going to lose my mind. Pure torture. We are having a baby girl! Maizie Marie! I am so excited. I still feel a deep level of uncertainty. Every day I imagine what the birth mother is doing and I feel like I can't wait another day. We are so close to the due date. I can't focus on much of anything. I am a mess. I feel separated from someone I all ready love. Is that normal? Am I putting all my eggs in one basket? This feeling is difficult to accept since I know the birth mother could change her mind. Our hearts could be broken and we would have to accept that. I know that God will get us through this waiting.

Little Miss M's Future??

Today we paid the price for some time away from our daughter Maizie. She had a great time spending the night at my sister's house and playing with her cousin. They even went to see a movie together. For Maizie one of these events is pushing her to the limit, add in a movie and we are just asking for trouble.
Joe and I enjoyed our alone time. We both went to pick up Maizie feeling positive, relaxed and looking forward to a quiet evening with our girl. We create this positive day dream every time we pick Maizie up. Has it ever went the way we think it will? Never. But, over time it has improved. Like most children with autism, Maizie has a difficult time transitioning from my sister's home back to ours. Luckily, we have advanced from the melt down beginning upon first seeing her. Now, she will hold back until she is safe in the car. She will put on her shoes and say her goodbyes. A major accomplishment! It used to be that I would have to carry her kicking and screaming to the car. As she got bigger, dragging her to the car was a better description.
Once to the car she would sit behind the drivers seat screaming and throwing anything she could get her hands on for a good thirty minutes. Over time we just got used to planning extra time for her melt downs. They were not pleasant and my blood pressure would raise immensely. A few times I would crack, pull over in the car and scream some myself. Mind you, this was after ongoing lack of sleep, lack of support, lack of everything. Now, it is not so bad. She at least will usually buckle herself into the car and I can continue driving while she screams a bit and cries.

The rest of the evening is filled with mood swings. Joe and I also get a big bump back into reality. Maizie goes from happy moments to whining and screaming over issues that are typically beyond our comprehension. Joe and I walk on egg shells as we try to avoid upsetting her further. I pray for the clock to move faster and bedtime to get here....NOW!
For the next few hours we will be pushed to our limits. Maizie will test our patience in every way possible. It is all I can do to not run out of the house and just keep running. This thought is not there as much as it used to be. I would always be imagining just jumping in my car and driving away, only returning when Joe could assure me Maizie was calm, relaxed and happy. Joe had similar thoughts. As parents we don't feel good having them but find them understandable considering the stress and exhaustion Maizie brings to our lovely threesome. We love her dearly and are thankful for the blessing that is Maizie. Believe me.

As you know though from reading my blog... every day is not like today. Maizie will hopefully balance out and the morning will bring a better day for Maizie. A better day for me and Joe.

When Maizie was about three we took her to a child psychiatrist for the first time. She was given the world's longest diagnosis. As an infant Maizie was removed from our home during the adoption process. We had seen her through her pyloric stenosis surgery and a long hospitalization. But, the adoption had not been finalized and the birth father entered the picture. This separation was torture for us and I do believe it had a profound and long lasting affect on Maizie. The psychiatrist said that Maizie suffered from Post Traumatic Stress Disorder due to the disruption she had from her birth mother, to us, to foster care and back to us again. All within the first year of life. We were told, "She is a baby. All they need is love, food and warmth. She will be fine." To this day I strongly disagree. Maizie missed some of the most important developmental milestones for an infant. She missed the gazing during feeding, the security of constant caregivers and the initial building of trust during those first few months.

Joe and I blame ourselves for much of that. We think, what if we could have found the right lawyer, found the right loop hole faster, what if we would not have given in, what if...what if....? I don't know how much of Maizie's issues are experience related versus her genetic build? I guess we will never know. Does it even really matter? Not a day goes by when I don't remember what it was like to lose her and think I would never see her again. I try to block it all out but it is always there. Taunting me, saying, "Be thankful. Be thankful for this child. She is only yours for a time."

More recently we are moving into a new phase with Maizie. Soon she will be a tween, bringing a whole new package of struggles, triumphs and changes to her life and ours.
I am reading so many blogs of children suffering through sleepless night, endless health questions, tantrums that make most children's fits look like angelic behavior and it has me remembering how far we have come. My heart aches for these families. I know how tired they are, how lonely they are. But, I also know how far they will come...they just can't see it but tey have to believe they will go far. Maizie has far surpassed what I thought initially possible for her. Now, I expect she will far surpass what I think is possible for her future.

Now that we are moving into the tween years I am so ready to move on and see Maizie meet and surpass the challenges waiting for her. At the age of nine Maizie finally sleeps through the night. I often sit and try to figure out the years before Maizie may be ready to move out and be on her own. If she is at a kindergarten level in math at age nine, then maybe by the time she is twenty one she will have the skills to live on her own. All of these thoughts are new to me and seem strange. I go from wanting her with me constantly to wondering if she will ever be able to live a more normal life...away from me... on her own. I know my parents went through similar feelings and worries with my older sister Marie. Now, she is living on her own with two sons. She does get a great deal of support from my parents but at the same time is this how far they dreamed she would go? I wonder how they feel about it and what their worries are for the next stage of my sister's life. For those of you new to my blog my sister had a stroke when she was six, is paralyzed on one side, deaf in one ear and blind in one eye. She is an amazing person and one of my best friends. She has surpassed odds unlike anyone I have ever known. How did my parents do it? I was there for most of it and I still don't know exactly. I think my mom would say through faith, through love, through lots of hard, exhasuting work and sacrifices.

What is in store for my little girl Maizie? I wish I knew. This is where my faith comes in. I don't know why she has to suffer and stay in sick so many days? Why to function normally requires medications most parents would not dream of putting their children on? Why she can't carry on normal conversations with children her same age? I don't know why walking two blocks makes her legs hurt. I don't know why she can't stand lights, changes or find her words to speak. They call it a chromosome disorder, autism, seizure disorder, PTSD...but to me this is all just Maizie and I love every bit of her. So this means I love even her weaknesses. But, I want so much more for her. I want her to be able to be healthy and happy and live a long life full of love. That, I guess is what all parents want for their children. So, in a way we are no different from any other family. Our challenges are just a bit out of the ordinary.

I know we are all people of different faiths blogging into the cyber world. But, this much I know...without something bigger to hold on to, without something bigger to spill my guts to I would not have survived. Find your faith and hold onto it tight. Faith makes everything tolerable. Faith makes me stronger so I don't run away. Sometimes that is the best I can ask for. Other times faith brings me to my knees and I can see everything as good.