Other Children

Today we went to a birthday party for a friend of mine's children. She has 4 girls and 1 boy and I have the 4 boys and 1 girl. We were usually pregnant at the same time. My mom happens to be best friends with her grandmother and we have become friends through the two of them. Together our families make their own party. It was at the place called My Gym. I had never been there but it is a wonderful place to go to give your kids a place to let off some steam. This was one of the best parties for the kids and they had such a blast playing with all the kids and running around.

She found out that she was pregnant when George was a little guy. They actually brought their girls over to see him and see how they would handle a little baby when he was only a few days old. At her son's first birthday she honored George's memory by having a monkey balloon there and making cupcakes with monkey wrapping on the bottom. It was so meaningful to me since we never got to even celebrate George's birthday with him. If there is anyone who George impacted the most I would have to say it was probably her. She was also the one person that has remembered the big dates of George's and done something special for me during it. It really meant so much to me because often times she was one of the only ones who cared and went out of their way to do something special to try and help our family cope with his loss.

We got to the party and the boys took off on their own. Hugh and I settled in with Gabrielle. They started to do some party games with all the kids. Somewhere mixed in all of that my mind wandered to George and wishing he was there. I saw this woman's son running around and it made me think of the day they came to see him and she was just starting her pregnancy with this little boy who was now running around. For whatever reason I could not stop staring at him and thinking that George would be doing all the stuff the little boy was doing and more. When I think of George I only see this 4 and a half month little baby,not a little boy running around like this boy was. I then sat there with a heavy heart thinking how unfair it was for us to not have him and how badly I wanted him here doing the stuff this little boy was doing. I guess in my mind, he will forever be a baby and I will always wonder what he would have looked like when I see kids that are the age he should be. Even when I see other mom's who have not lost their children, part of me yearns to be like them...I remember being them...now I am forever different and will never have that back again and I think today was the first time I actually realized that.

"Somewhere in the Middle" by Casting Crowns

Casting Crowns - Does Anybody Hear Her

Hold Fast - Mercy Me

Respect/Judgement

For whatever reason, this has been one of the toughest weeks for our family. Emotionally we found out that there are people who somehow let us down and are not exactly those who we thought they were. In the end when push came to shove their colors were shown and I can't say how hard and disappointing it was to watch it happen. I am no stranger to this, especially after George died, I really found out who was there for us and who wasn't. With all that I have, I try not to judge, but there is that human part of me that does and is hurt by those who we feel have let us or others down. It is so hard to not put expectations on others and to hold them to some standard but I guess in the end that is why God is the judge and not us, and I am so thankful for that.

For the past two years I have been planing with my friend from Germany her trip back here to the US to visit our family. After George died, I really needed this more than anyone will ever know. She really understands me and I can be honest with her about my feelings. We are kindred spirits on so many levels. Over the past few months she has started a relationship here in the US with a family member of mine. This whole trip here was initially going to be to visit here and spend time with us but that all changed once this relationship took place. She has now flown in down south and is an 8 hr drive away.

Initially we thought it would be no trouble to take the trip but after much realization we felt it would just be way to much financially since we just came back from FL two weeks ago and very difficult to pack up over 8 people to drive to see 3, not to mention the countless family members here who cannot make the trip. Now there is no way we can go for sure with a phone call from Michael's teacher yesterday saying she was very concerned about his health. I cannot chance his life and well being no matter how much I really want to see my best friend.

My mom had spoken with this family member about possibly coming up here to see everyone for a few days since this was the initial plan anyway. In no uncertain terms we were basically told that this was their time and that they were not going to waste time driving up here. It was a shock to us all and in a way very hurtful without him realizing this. I feel as if I am having yet another person ripped from my life and I have a feeling that should things work out between them things will never really be the same ever again between us. Throughout the years I have always had some hard feelings with this particular family member for just the fact that we are just very different and view life very differently along with what is important. I've really tried to be open and understanding and I love them for who they are but in the end I don't really feel that we will ever totally understand one another or view things even remotely similar.

Last night I sat here with Hugh and I was trying to figure out why this bothered me so much and then it hit me. First of all it was the possessive unyielding way we were politely told no, this is all my time and I am going to take every moment and if you want to be part of it you will have to be the one to give but only after I say we have had enough time together first. That really bothered me because I felt as if he was cutting us out of her life now that he was part of it and felt more of a right even though I have known her and been closer to her for much longer.

The second thing was because this trip was being planned for over two years, and part of me felt as if I was holding on and keeping it together knowing that eventually I would have the time to sit and talk to her face to face about all that has happened, especially where George's death was concerned. She is a scientist by trade and I had wanted to share his autopsy report with her and
he things that I just cannot share with anyone else. Finding out this news just made my heart sink and feel even more weighted and heavy than ever before. Some of me felt there was an end of the tunnel ahead where my grief was but I have come to find out it is just a turn in the road. This family member has also made it clear to me that George's death really means nothing to him and that hurts dispite being told, "not to hurt your feelings" Anytime someone says that your son's death doesn't really impact me or have relevance to my life, it is like a kick to the stomach and it knocks the wind out of you while you collect all you have inside to not cry or loose it.

At first I thought I was the only one feeling this way and that I was just being selfish myself but I have come to find I am not alone in these feelings. No matter the case, I find it so hard to really let go of the pain, anger, and frustration I have inside to just move forward. All of this recently transpired and I am sure I am feeling this way because it is all new and I now have to relearn how to embrace the change in this relationship however it is not going to be as easy as said. With these new boundaries set, I have to find out where they lie and start all over again. I don't hold anyone responsible but there still is pain and hurt that I have to work through and a general loss of respect that I have to try and change. I am praying really hard about it and asking God to help me through these feelings of abandonment and sadness as I move forward knowing we will not get to see one another and that things in general are just never going to really be the same ever again.

Earlier in the week there was another incident that had me feeling a similar way. It involved my brother and his current girlfriend. They have been together for a few years now but have always had a rocky road with a few smooth places in between. Something happened that a good portion of the rest of our family was very upset by. In the end they did not split up however there was a great loss of respect for both of them that took place in a lot of people's minds, mine included. I have been in my brother's shoes when I was married to my ex-husband and it is not a fun place to be. Even though I have walked the road and I try to keep an open nonjudgmental mind, it is not always easy. I also find that people will forgive but they don't forget and somehow no matter how you try to do this, it doesn't come easy.

It is also hard to sit by and watch someone self-destruct or become a stranger in your eyes when you really thought you knew them. Loving them unconditionally becomes even harder and even for them I am sure it is different. So often when I feel these sorts of things I think I am on my own only to find out I was not the only person feeling the same way. I'm an honest person about my feelings and letting people know it is personal feelings, not necessarily the truth because I know I am not in their shoes. We have been judged unjustly by others and I know how hard it is to feel like an outcast among those you love.

Why am I sharing this? Well, I know for sure everyone has moments like these, we are only human. It doesn't make us non Christians but rather human. I sit here and think of my own feelings and try to think how they must relate to God and his. These people I have been hurt by I will still love no matter the case but that doesn't mean I am not going to have other feelings mixed in there. God must have been pretty upset when Adam chose not to listen or really felt bad after he flooded the Earth during Noah's era. We are made in his image so I am sure that he understands, especially since he sent Jesus here to be our savior. For crying out loud, I know I need one and so does everyone else on this Earth. We become swayed by our own feelings and upsets and make decisions based on them and find ourselves judging without even realizing it. No matter what we do, God finds forgiveness which is not easy to come by. It is easy to say you would give your life for someone else but would you give your child's no questions asked? I know I would say no!

All of the things we feel and do in our lives God understands and takes part in, the good and bad. Ultimately it is up to us to choose the path he has laid before us. When things get tough like they are right now for me, I try to pray for guidance and an understanding heart. It doesn't always work but I can say that God works on my heart and helps me through these types of things and for that I am so thankful. I can't imagine this world without him and having to walk this road alone as humans, it would be even more messed up than it already is. Thank you Lord for helping me through the tough stuff and that you are the judge in the end, not us.

Mito

As many of you know I seriously suspected that George had Mito and I do believe that it probably contributed to his death in some capacity...how, I'm not really sure. There were many docs and others who also felt he had this but there was no way to confirm it in his short time here on Earth. Michael and Joshua both have confirmed diagnosis of Mito. The diagnosis for Joshua was not an easy one, requiring a trip to Georgia with major surgery that removed muscle from his leg at a year old. Even that was a shot in the dark at a chance to find out if he had the disorder but thankfully it confirmed what we had suspected. Not everyone is lucky enough for that and it is a shame that it has to be so invasive to get a diagnosis.

All of that being said, the boys have been participating in a research program at St. Christopher's Hospital for Children in PA. This research is being used to find a better method of diagnosis through a simple mouth swab. Michael was actually diagnosed this way and did not have to endure the same things Joshua did in order to get a diagnosis. Unfortunately at the time the doctor running the study was not doing babies so George was never tested and the cells that are left at the coroner's are from him after he died(not a valid way to test for the disease at this point in time). It was and still is so hard for me to not have answers where this was concerned and I really hope that someday others will have answers that we don't just because of our participation in this research.

Today our whole family went up to St. Chris and met with the doctor running the study. He swabbed everyone in the family to add us all to his study. Our family is "interesting" to him due to the half sibling in Richard and Hugh's family history with others possibly affected. I contacted him after I had a bad reaction to anesthesia and wound up in the hospital for 3 days after surgery to only have no answers and I asked him if he would be willing to swab both Hugh and I. He told me whoever I brought he would do, so we all took a trip into the city today. I don't know if we will ever have answers for ourselves but I pray that this helps others that are coming behind us and will unfortunately know the diagnosis of Mitochondrial Disease.

I really believe in his research and have also asked him if he has set up a fund yet. As of now they haven't but my suggestion has prompted them to do so and it is now in the works. This disease is horrible for many reasons but most of all because there is just not enough known and even less doctors willing to treat patients that are competent doctors. If you are an adult, there is only one doctor in our area working with patients and she is not taking any more patients. It is an exhausting disease for many docs and patients require a lot of time and TLC which most docs don't find in their best interest due to lack of payment from insurance companies. Patients can't even get the medications they need covered by insurance not to mention have the ability to see people who specialize in the disorder.

With the research taking place in our own backyard I feel in a way that it is our duty to participate in order to help others, not to mention hopefully get some answers ourselves. I also want this to continue so that it is available to other people. Right now it is at no cost but after some conversation, I have found out that the doc may have to start charging patients even though he doesn't want to. Researchers don't make much and truly work because of their love for their project. Even if it is a total flop, it is still a success in my opinion because they found out one thing that didn't work and it is still narrowing down the field of possibilities. Right now he is so overwhelmed with people wanting a diagnosis that he can't even begin to expand what he is already working on like he wants to due to funding also.

As Ken, the boys old pediatrician, says "Mito sucks!" and he knows first hand because of his own son having the disease. There are so many struggles that patients with this disease face and it is only compounded by a general ignorance by a good chunk of the medical community and their "I am always right because I am a doctor" attitude. We need good people willing to help and listen because they care not because of the dollar signs. Having been a medical biller, I totally understand the struggles that these docs face and why they opt to avoid patients with the disorder and it is a shame. My biggest worry is that my children will survive but have no one to advocate for them and be their doctors as they get older.

This disease is so random and vast that we need so many more hands working on this. A child who is severely affected with feeding tubes, vents, and all sorts of other equipment/needs can outlive a child who "looks" perfectly healthy with limited needs. There are kids who die at all ages, some with specific problems and others leaving with no answers at all. The only thing that people with this disease share and have in common is just the actual name "Mitochondrial Disease" I will never forget that my biggest fear was waking up to find one of my children dead and no warning and now I am living that hell every single day.

It really is a shame that this is how it is right now. There is not only alienation from the medical community but also among the families coping with this. Somehow there is a sense of my child is sicker or this need to have others validate your suffering or that of your child. This of course isn't the way for everyone but there is quite a bit of this and I have experienced that first hand and even lost a friend over it after George died. As a parent of children who "look" fine, you have a whole other set of struggles then those who have children who it is apparent are affected. There is no better situation because they each come with their own positive and negatives.

For us, we know he had battled this disorder even if it did not cause his death. Every single day he struggled and suffered from reflux, feeding problems, and susceptibility to sickness. He was my sickest little guy but no matter the case, he was loved and it hurt just as much to loose him as it was for anyone. There is no better or easier way to watch your child die and be left here to cope with it and have to find a way to live without them in your life. I pray that our participation and that of those all over the country who have sent in samples, helps to get answers someday, if not for us but for someone else. I sat there today with a heavy heart just wishing I had answers with George but also knowing that somehow we are farthing this along for others. If anything George has made me more passionate about participating and that alone is a gift he is still giving to the world. I would not trade any of my kids for children without the disease so we push forward and pray we can help others that find themselves in our situation some day but hopefully their road will be a little easier because of our struggles. Somehow, feeling this way justifies to me all that we have been through.

Bedtime

Yesterday was a rough day for me. It was one of those unplanned moments that took me by surprise. Things here have been kind of stressful lately with the odd hours Hugh has been working. The boys have also been kind of off since we got back. Michael has these random episodes where he spikes a fever. Gabrielle has been fussy, and will start to cry when I leave the room and now that she is crawling she is into everything but hates to be cooped up. I'm so thankful that my mom helps me out with these guys but even she was at her whits end the other day when it all seemed to hit at the same time and all the kids were crying at the same time. I've felt very overwhelmed at times but am still pushing through.

Yesterday was really tough for me. My mom had been reading on the internet that Gabby should be sleeping through the night. She brought this up to me and I have never thought about it at all since none of my kids have ever slept through the night due to their disease. We read that it was 4months and she is 10months later this week. With that we try to get things organized around here and make it easier for her to nap and sleep when and where she is suppose to. Usually one of us rocks her to sleep(I never did his with any of the boys but things surely changed after George died.) She would always wake up if we put her down so she would just nap wherever she fell asleep. At bedtime she was in a sleeper and not her crib. We decided we were going to try to transition her into her crib for naps and the pack n play for bedtime since her room is not on the same floor as ours and she still doesn't sleep through the night.

The crib was originally in our room but space wise it just was easier to swap it with the pac n play in her room. Gabrielle was not happy about this and it was really rough. She would just cry. My mom had her the first try. We decided to try again the next day and I went in to get her and try to calm her down after she cried a while. This weird combination of emotions just washed over me. It was the first time since George died that I actually put a baby to bed in their crib. The whole scenario just reminded me of the last time I put him to bed. He was fussy, probably due to the ear infection he had that we didn't know about, and after my shower, I walked into his room and rocked him a little and then brought him out to play. Her cry and rocking her in the rocking chair just brought me back to when he was alive and I felt like I hit a brick wall. While I had her I didn't cry but the minute I got her to sleep and placed her in that crib, I walked out of the room holding back the tears my heart was crying.

My mom looked at me and was talking to me. She asked me if it was hard for me and with that I just shook my head and could no longer hold back the tears. They ran down my cheeks as she praised me for doing it but I couldn't think about anything she was saying. In my head I just kept replaying that night I put him to bed for the very last time. I will never forget his little head popping up and looking up at me only to put a sour face on and cry. God my heart felt bad as I walked out of his room and once I walked to his crib and rocked him, he settled down and went to sleep. Every single part of me just kept reliving those moments over and over again as I tuned out what was going on in front of me. My mom told me how hard it was for her the day before and how she couldn't imagine how hard it had to be for me.

With that I took a shower where I just fell apart and cried. Hugh had not gone to work yet but I knew he was leaving soon. I went downstairs after my shower and just couldn't keep it in and cried saying to him "It just hurts so bad; I want him back." For me these are the moments that are the hardest. I want to just go to bed and forget the rest of the world for a while but I was not able to do that. Hugh had to head to work and I was left to deal with the kids and my broken heart on my own with my mom's help. We have since decided we are going to just take a break from this for now because I emotionally need the break and one day she will sleep in her own bed and won't be doing this forever so we will just deal with it until then.