Re: venting....trust me..VERY LONG Donna

[Guest guest]

Donna,

Wow girl I sat here reading your vent and felt like I was reading my own story. First of all girl take a deep breath. You are not insane, nor crazy, nor do you have Munchousen which by the way I was also accused of early on in our oldest daughters walk with Mito, I have 3 with Mito plus myself. Very frustrating to be accused of something so horrible when nothing can be further from the truth, I fully understand. What I had to learn was that one: God gave me my children with this wacky disease because he knew I would fight for them! Two: You and only you are their mother and fully know what is going on, you must grow a thicker skin and be able to smile at the ignorant while choking down the overwhelming urge to hand them their backside! Three; The only true friend you will have will be the ones who take the time to really sit down and listen and watch what your world is like. We too have lost a good portion of our friends which hurt me greatly, but as the time has gone on, I have seen people slowly start dropping back into our lives when they could finally see that this was not a phase or something I was doing to get attention. I truly had 2 friends who I can honestly say have hung in there unwavering in their opinion of me and my family's situation, and they were not even family members. 4; Family members will be your worlds worst nightmare because they feel helpless I have come to realize. They want to help, but in their own frustration of not being able to help you in the way you need, they get their feelings hurt, which in turn, turns into jealousy and anger thrown back at you. Not what you need at all, but only what they are capable of doing. Keep venting!!!!!!! This is your survival tool! Get a journal and write it all down. I have been doing the Mito thing for 14 years now and It amazes me what we have survived and lived through. I have it all journaled in numerous journal books. And it is OK to get mad when you are being treated wrongly! They may be doctors and Nurses but they are No different then you, they are just humans, not Gods although some think they are. This is why I have worked so hard to develop the relationship I have with my kids main doctors. Dr. Boles knows I am eternally grateful to him for all that he has done to keep my kids alive, however he also knows that I look at him as a human being who is capable of making mistakes as well and he must prove to me why what he is suggesting will be in the best interest of my children. This has taken a whole lot of time on both our parts for sure, but I would trust him with my children at any time because of it. He knows I will not hesitate to tell him how I am feeling, and vice versa! My loving nickname is Mito Mommy from Hell, at first I didn't like it, but you know what I am very proud of it! I have worked hard to study and know my children and their signs and symptoms and I am the only one besides them who truly knows what is going on with them. That does not make me a munchousen Mother, that makes me a loving very devoted and caring mother who will stake everything I have to insure they have the best life possible. If that is someone's definition of a bad mother, I feel only pity for them, because they have never had the opportunity to experience what true love really is all about. I have always told people it is instinct to love and nurture a healthy child. It is Gut busting unselfish dedication and selfless love to nurture and love a sick or handicapped child. It has gotten so much better since I first started with the Mito road 14 years ago walking into a hospital ER and having a doctor have half a clue as to what Mito even is and that it in fact does exist. I know it is little assurance, but it is getting out there and more and more doctors have at least heard of it and are willing to look something about it up. My own children have told Dr. Boles themselves that they think it is so unfair that the cancer kids get everything, so please know your feelings on that are not just you being selfish. I have often struggled with those very thoughts myself. Of course you are not wishing that the cancer child would suffer, however it is extremely frustrating to be turned away when you have a child who is just as ill if not more ill than a cancer child may be at the time, just because you don't have a known illness. I was very frustrated with the Mc houses because of this very thing. Cancer patience have priority, I can't tell you how many nights I spent on the floor or in a chair because we didn't have cancer, but a new family would come in that did and they would get the room. All I can say is make your voice be heard. I have taken this policy on in my kids illness years. I wrote letters to the Mc houses explaining my plight and through the years I have seen this policy change. Now granted they were originally for cancer families, however our world has lots of needing and hurting families and I asked that a certain number of rooms be set aside for piggy back diagnosed children which our local house now does. Try to turn your frustration into power. You have a lot of frustration which can be turned into incredible amounts of power. My children did a community service project called sock it to sadness and donated over 700 pairs of socks to kids in the hospital at Christmas this year and are getting ready to do their spring collection. A lot of the socks went directly to DR Boles for his kids and to the floors that deal with Mito Kids. It was my kids way of making Mito kids world a little brighter. But most of all, you must take time for you! I used to laugh at people who said this to me. Yeah right! In my spare time, in-between shoving pills times 10 down three different children, running apnea monitors and pulse ox machines, venting g-tubes, running to ER rooms, yeah right take time for me! Are you that stupid and ignorant of my situation? However Dr. Boles bless his heart, took me aside one night that I was loosing it while sitting with my oldest once again in the hospital who was very ill, and granted he was scared with the lack of progress my oldest was showing at the time, but he walked me around the floor just talking to me about other things, his family, and my job ect. When we had walked that floor 3 times he said now mommy how do you feel? I looked at him and I felt so much better, he said we just took some time for you! Of course I was amazed, but have been eternally grateful to him for this and have never forgotten it. It was then that I learned what take some time meant for me during a crisis. I didn't have to go on vacation away from my ill child which is what I thought everyone was saying when they said you have to take time for you , I did have to walk away for just a little bit though! I was able to return to her room and make some very tough decisions that I don't think I could have done prior to our little walk. Surround yourself with those who understand, if it be this list, or caring doctors and nurses, they do exist out there, but you have to allow them to exist as well if that makes sense. Don't treat them as Gods treat them as family members, I don't know about you but I have times of pure joy and pleasure with family members and I have had some major disagreements where we had to agree to disagree but I win! Treat your doctors in this manor as well. Ultimately, you are the final say, which many don't want you to remember cause it makes them work a little harder. But most of all Hold that Mito Mommy head up high!!!!! You are walking a tough road and God must think a lot of you to have placed you on it!

Hugs,

O

[Guest guest]

Donna,

I am glad what I shared didn't stress you out too much. I can remember spending nights in tears wondering why people thought the things I perceived they thought about me and the kids and their illness. It is a miracle that my poor husband has hung in there with all of the stress we have lived through. He tries to be supportive, but truly does not understand the kids illness to the point that I do. It was even a point of several "meaningful discussions" we have had in the past. If he would just learn a little more than maybe these doctors wouldn't think I was so crazy, we would both be crazy together! LOL I do know that when he was involved for some reason they the doctors tended to listen a heck of a lot more at first. It is definitely a long road with many a winding turns for sure this Mito Road we travel, some not so pleasant at all. I know when I found out we were not the only parents dealing with this rare disease was the day I began to return to some normalcy. Our oldest was however 6 almost 7 years old by then, and we had lived through some crazy stuff by then, including the munchousen accusation. But you know, we have survived and our kids are still with us, and for that I am eternally grateful for sure. Support groups of other parents who are going through the same things are definitely a help! So any time girl you are feeling frustrated you just vent away! The fact that you will vent is a very healthy sign you know! LOL

Hugs!

O