comments

Anonymous said...

I am really sorry that you chose to have this child that will be afflicted with a life long illness. I am sorry that she will battle for well-being every day that she lives. I am sorry for the tax payers, as she will become their burden to bear. All because you decided that it was best for you to breed.

Chances are that your daughter will also breed.

And the cycle will continue.

Wow.

I don't mind comments and will likely answer just about anything that is posed to me. This one blew me away.

I don't believe that I have ever thought that my daughter would be anything less than an adult who is a positive member of society, supports herself and pays taxes much like I do. My mental illness is not something that most people I know would have any idea about. To the vast majority of people, I am a typical functioning member of society.

Those who are aware of my daughter's diagnosis are shocked when they find out about it. They would have very little cues that she is "suffering" from an illness that will likely affect her for the rest of her life. It is one that is very much a hidden disability. It is one that while she will "suffer" for it's affects, I fully expect her to live a completely normal life. It is one she can overcome and will prosper. She will be given every tool to manage her illness and her issues. She will be allowed to talk openly about her illness if she chooses, or keep it private. She will not be a burden to anyone, and the taxpayers will have no part in paying her way.

I am proud that she is my daughter. As she grows we will talk about how she likely inherited this disorder from me just as I likely did from my mother. I will express to her that I sometimes bear the guilt of that. I will be honest with her. We will talk about the fact that her diagnosis is not a prison sentence. She can do anything she chooses. She can go to college and have a rewarding career and wonderful family just as I do. I support her choice to also have a family if she chooses just as I did. I will not shame her for choosing to have a family and will give her the support she needs to raise her children in a loving, functional and open home.

The cycle may or may not continue. That is not a choice of yours.

The SPEAK campaign that encourages others to speak out and share their issues with mental illness is born due to the attitudes and opinions of people such as this anonymous commenter. People have to be told over and over and over that it is okay to speak out that they are dealing with a mental illness because there will always be those who do not understand. There will always be those that look at us as though we are defective. There will always be those that act as though we should be ashamed and hide our issues. This not the case.

I am not ashamed.

I am not faulty.

I am not a burden.

I am who I am, just as you are who you are.

That is how I want my daughter to view herself. I will fight like hell to make she she never feels like the anonymous commenter and others like him/her view her. She is perfect. Fucking perfect to me.

cycling

So I am pretty sure my daughter is in a manic phase right now. She has been kina sorta diagnosed with a mood disorder and the BiPolar diagnosis has been discussed but not technically assigned. This is the third time that she has been in a phase like this and I am pretty sure she is cycling.

On Thursday I noticed she was agitated. I thought it was the drama of the weekend and her routine getting messed up. With her OCD the routine is critical. The same-ness of her environment is super important to her. On Friday, school was pretty rough. Her teacher called me to tell me that she was "bonkers" and was quite spastic. She was not raging, just wild. Her teacher said she also noticed her handwriting was large and very bold also. Last night she was well behaved, but loud and hyper. She did not sleep at all last night. She came into my room every half hour or so to say hello or tell me that she stubbed her toe. She stayed in her room watching television and did not make a huge mess so I was grateful. It is the middle of the afternoon and she is still going strong like she slept well.

The last time this happened was about 6 weeks ago. She acted the same. Not sleeping, full of energy and happy. Today I took photos af a friend;s child. She always goes with us and she was super helpful and kind to the child. She adores her and dotes on her. I suppose it could be worse, she could be crazy.

I have been mourning the BiPolar diagnosis since it was mentioned. I suppose it doesn't matter what initials are slapped on her chart, she is still my daughter and I adore her. It is much easier when she is pleasant and for that I am grateful.

support

What is it about being the parent's of special needs kiddos? I think we have so many different challenges that people who are not in our shoes could not possibly understand. I know so many families have talked about the divorce rate with families such as ours, but I was thinking about it differently the other night when I could not sleep.

My hubby and I are pretty stinking close. We rarely go and do things without our kids (although we probably should more often) because the logistics of finding others to take care of the kids and all their various issues is far too great a task. We also enjoy one another and our kids! I think in our case, we have bounded over the special needs in our household. We have spent so much time relying solely on each other for support and "real life" encouragement that it is difficult to see someone else playing that role in one of our lives.

For so long, we have felt so alone and like no one understands what our life is like that we have battened down the hatches and circled the wagons. We have relied on each other to make one another laugh, held each other (me) while we cried, and stopped one another from going off the deep end. We are the only ones who truly sees what our home is like and what our kids deal with every day. The drama of having a traumatized kid in the house is great. In our home is one of the only places he feels comfortable enough to let loose. We are almost always his target. We are the only ones who could understand that.

Enter in another family who understands, not because they have seen it in our home, but in their own. This family has an inkling of knowing what we deal with. Even if their struggles are different they have been where we have been, they have walked a similar road. They understand the heartache, the drama, and the exhaustion.

But the problem is that we have relied on one another for so long, it is difficult to let someone else carry a part, even if it is a small part, of that burden. I have noticed that my hubby is more leery of allowing someone else to be that go-to person for my drama. He is feeling as though I no longer need that portion of him and that makes him feel a bit slighted. I had no idea he felt that way. I had thought that he would enjoy me being able to load that onto someone else. I thought the "respite" would be a welcome thing. After taking it over he understands and sees it differently now. He is understanding that seeking perspective from someone else does not mean that I don't need him, it is simply releasing some of that burden off him.

I am very blessed that he shares things with me instead of keeping it all bottled up. We are very different when it comes to how we perceive things and lately we have come to a good understanding of how one another thinks so very differently and have begun asking questions instead of making assumptions. That is a good thing! Our marriage is by far perfect. We will always have misunderstandings and confusion, but as long as we are willing to discuss them we will make it through . . special needs be damned!

rain

Apparently when it rains in my life it POURS. This weekend I went up north to visit my fabulous Soul Sister and spend some time with her wonderful family. A bit over half way there, my child with FAS (16yo) began puking uncontrollably. I got him some nausea medication and it stopped until morning. Morning began a bit and more meds kept it at bay. By early afternoon he was bent over in pain (this is a child with next to no pain receptors) and puking up everything consumed and then some. I consulted with the ped at home and took him into a satellite emergency room.

A few tests later and about 2000 cc more vomit and we were on our way in an ambulance to the main hospital with a severe bowel obstruction. Suck. The husband stayed with him as we got things organized at her house with the other children (her husband was a saint and had 5 kids at the house all day!) and then headed back up in the evening. They say things will move along on their own with hydration and meds, or he will have to have surgery to clear blockage and likely to remove part of his bowel. Oi!

I returned hom with the little kids so they can go to school tomorrow (6 hours one way!). I will return to the Great North (6 hours one way! Did I say that?) and retrieve son and hubby or sit at hospital til he is well. What a week this one will be! The only solace is that I was with my darling friend when this happened. She is a gem! I love her to bits. I had lost my ever loving mind this weekend, misplacing things, stressed beyond max and barely breathing. She took over, packed me up, sent me things, bought us lunch, took care of all of us (and convinced me to buy some awesome shoes!) . I could not fathom my life without her in it. I am more than grateful that she is a part of me forever. (She couldn't get rid of me now if she tried!)

It was interesting to me that even though I was stressed and forgetful, I was not crying or falling apart. If this had happened anywhere else I could never had held it together as I did. She is my rock. As soon as I got on the road to go home, the sense of dread rolled over me and I began to rumenate about all the many things I had to accomplish over the next 24 hours. I started to hyperventilate in the car and had it not been for my two little angels in the back (har-har, my daughter raged for 20 minutes at one point) I may just have thought seriously about that urge to drive into the path of that semi barreling down the road at 70 miles an hour. The thought of seeing her again held me to the ground. It mattered. She mattered. I knew I could do this.

The fun doesn't stop here! Oh no! There were 3 more fun times! 1. My daughter raged for 20 minutes on the tollway at one point. My son and I ignored the best we could, I knew sahe was stressed about leaving daddy. Her counting and perseverating had worsened since this happened yesterday. At one point my son said, "Do you want to live to see your ninth birthday? Then shut up!" And you know what? She did. 2. My van started displaying the oil light. I pulled into a gas station and there was NO OIL at all on the dip stick! Ack! Thankfully I was out of the Big City and close to a gas station and 3. I started a fabulously awful yeast infection from the antibiotics from the pneumonia ON THE WAY home during this 6 hours trip!

Sometimes you just have to laugh! All the other options are just too bleak right now!