Special Needs Children

As many of you know, my children happen to have a rare life threatening disease. This of course has changed our lives on many fronts. I remember thinking that I would never be capable of handling a special child with different needs than others. At one point in my life I would pity the parents I would see with these children. I could not imagine how difficult their lives were and I did not want to ever have to deal with that myself. Little did I know that eventually I would have no choice in the matter.

Richard, my oldest son, has a different father but he was quite a fussy baby but bright boy once we got past that first year. He would make you laugh and smile and just did all the things that "normal" kids do. I met my husband and we married and could not wait to have a baby together. Joshua was born the July following our wedding. I will never forget his birth and the joy we felt but it was like being a new mom all over again. He didn't meet some of his milestones and I thought that there might be something wrong but all the docs just said he was fine. At 4 months old he had his first seizure and that was the one thing that changed our lives forever. A year later after trips across the country and many sleepless nights he was diagnosed with Mitochondrial Disease. It is life threatening and it was apparent by that point that he was having trouble with simple tasks that so many of us take for granite.

Michael was born and I had learned so much with Joshua that the minute he was brought to me, I had that terrible feeling all over again. He had pretty nasty tummy troubles and just cried a good chunk of the time. Michael's obstacles were much different than Josh's ever were even though they have the same disease. It took me a while to get the docs to look at him since he did not seem to be like Joshua to them. A mouth swab would give him the diagnosis I knew he had from the day he was born.

Richard, my oldest, happens to have ADHD and Tourrett's Syndrome. His Tourrett's was only diagnosed by sheer accident when I took them to Texas to see a doc down there. It gave me a better understanding for him and the way he thought and once we knew what it was, I was able to meet his needs better. At this point he has not been diagnosed like his other two brothers with Mito but he has his own set of obstacles that he deals with every day.

Growing up I did not have trials like my children do. It took me by surprise to be given these children. No one in my family happens to have children with these needs and that us surprising since my grandparents had 10 children. I felt so alone and lost in the beginning especially when doctors had no idea what to tell me where the kids were concerned. Hugh and I muddled our way through but I did not ever have time to have a pitty party. Thinking back about it now, there really was no need for one since they each brought so much joy and I would do anything to help them become the best they could be and not what standards that our society puts them all up against. They have all taught me so much in their short lives than I had ever learned from all the years before I was blessed with them. It is not easy by any means and there are days where you can feel the stress of it all taking its toll on the whole family but never would I trade any of it for a "healthy" child.

George was my sickest baby. I know he would have been the one with all the problems. He would have had many issues and needed a lot of intervention and help to be able to do just basic tasks. His spirit however was just so pure and you could see he was truly God given. I would often times sit on the floor with him and do the physical therapy that I had been taught years before with Joshua. We did lots of things to ensure he was just eating properly since his food did wind up in his lungs without warning because of an issue with fatigue making it hard for him to complete a meal without aspirating. He had reflux and a whole other host of problems but none of them defined him and neither do the other issues each of the boys have.

As of now Gabrielle seems fine but there are a few things I am keeping my eye on. We were told that she had a high chance of having Down's Syndrome. The docs offered us further testing while I was pregnant with her but we refused it. They kept a close eye on her but as far as we can see she doesn't have it. I remember a time where I would have wanted to know, no questions asked. Now, no matter the problem the baby would have, I would carry the baby no matter what since I believe it is God's decision and that I have learned these children are not burdens and they do not suffer in the capacity that we think they do. Pain is really relative for all that they bring to this world and their little lives no matter how long they are here are meant to be for some reason.

You are probably wondering why I am babbling on about all of this. Today I was fortunate enough to attend class with our son Michael. They were having their Field Day that they called "World Series" Michael's class played the other preschool class in a game of baseball. With the heat we were all inside having this world series in the gym. Sitting on the sideline cheering out little guy on was nothing but amazing. There was a room full of kids with all sorts of problems ranging in severe to mild. They were all 3 or 4 years old and no matter their problem they all played and you could see nothing but sheer joy in their eyes. A little girl who could not walk unassisted with Down's Syndrome even played and you could just see God's presence in each of these children. She sat on first base waiting for the next kid to hit and started to wave at Hugh and I and she worked so hard to get to each base with the assistance from an adult. Other kids needed other adaptive things in place but they all participated.

My mind went to George and wondering what his life would have held for him. Many people will say that he was probably better off but I don't know about that. In the end God called him but this whole even made me realize yet again that we all have a purpose here. That room was filled with more joy and excitement than I had ever felt in any "normal" setting classroom. I've been fortunate enough to sit in both places. This feeling just filled my heart to flow over with such joy as I watched these kids. They truly proved that special needs children are a gift to this world and not a burden but rather just SPECIAL!

Already Taken Care Of

Tonight I had a moment where I knew that no matter what we will be taken care of no matter the outcome. Yesterday I found out that Richard's biggest problem with moving is that he feels like we are leaving George behind. This is the only house that any of us have memories with him and moving is to all of us like we can't take him with us and we are leaving him here. I know that feeling and it just breaks my heart every single time I have to think of this.

I sat there with him trying to think of things that would help him with the transition and help him to know that George will always be with us no matter where we are. We came up with a few different ideas. One happened to be to see if the woman who made me a memorial quilt, to see if we could get her to make one for the boys. It is so beautiful and brings so much comfort, I cannot even explain, it was made of his baby clothes and when I miss him most, I wrap myself in it. The boys call it mommy's special blanket.

Today I sat down and emailed her to ask her for the favor. We don't have any more of his clothes left over since we sent them down to Sough America to cloth refugees babies at our sister church there. I figured I could email her pictures of the boys with George and she could print them out and maybe use the boys favorite colors to make the quilt and I would buy the fabric if needed. Here are the emails that we shared:

Just wanted to let you know I am still waiting on those other families about the memorial quilts. I was however going to ask a favor of you for my boys. Hugh and I are loosing our house and right now are working on moving over to my parents house. The kids are excited but their biggest problem is the fact that they are sad since this is the only place they have memories of their brother. As I was sitting there thinking of a way to help them with the transition, I was thinking of the quilt that you made for me. I was wondering if you would be willing to make one for the boys with pictures that I have of them with their brother. I could get the fabric if you want, I would just need to know what exactly you need. If it is too much to do three of them I totally understand and really need one for my oldest son who is having the hardest time with it all since his comprehension is much different than his younger brothers. I can email you pictures of the boys with George to add to it, but anything you can do would be greatly appreciated, if you can't I totally understand and will find another way to help them through all of this. Thank you for everything.

Nicole Garman

Funny you should write this.... I have a box here I was going to send to your family.

It has a quilt for Gabrielle made from left over fabric from George's quilt, I then used all the rest for a pillow with all there names on it... Plus I added 3 pieces of fabric for them to use crayons on and be creative then would make each of them a quilt from the fabric with there art work on it. Just let me know if that will help. You know what ever I can do for ya'll I will. Let me know your new address and I will send this box out.

Michelle

I cannot tell you how I was taken back by her email. God had already known we were going to need these things. There is no coincidence in this and I know it in my heart. Tears just rolled from my eyes and I sat there just crying. I couldn't really tell you exactly why I was crying but I think it was for a whole lot of things all at once. I think it was for the pain of loosing George, the sadness that my kids have to carry, and the joy and solace I found in knowing that this was something in the works even before I even knew I needed it. It was all just so overwhelming.

Michael came in and saw the tears. He looked up at me and asked me why I was crying. I told him that I missed George and that my heart just hurt. He looked up at me with that childlike innocence and pointed up to the sky and said "Don't worry mommy, he is ok, he is safe up there God is taking care of him!" What do you say to that?

Better Than A Hallelujah Amy Grant

God at Work

The humble will see their God at work and be glad. Let all who seek God's help be encouraged.

~ Psalm 69:32, NLT

There are moments in your life where you forget that God is at work in all that you do. Usually those are your moments of dispare and heartache. We often wonder if there was a God why would we have to endure all this pain and suffering. I too feel this way to often but know I have no other option but to keep pushing through and moving forward. My faith doesn't waiver I still have that but it doesn't go to say that I don't have moments where I yell and ask God what in the world he is thinking and how in the world am I expected to handle any more. Often times I will tell him to go find someone else to pick on because yes it does seem like he keeps choosing me to test and I just don't get it and want a break.

I learned a long time ago that fairytale are actually life...we all forget that every single fairytale comes with many obstacles and trials only to have a final triumph only at the very end and after all the suffering the person endures. Our prince however is Jesus and God is our happily ever after! There are many new people and old people that help the man characters to get to the end and have support but at no point is the person ever spared the pain and trials and it really wouldn't make a good story, would it? This too happens in our lives all the time. We don't find elation in the millionaire winning the lottery but rather the man who came from nothing at all. Actually you find yourself wishing the millionaire wouldn't have won and how he really doesn't deserve anymore than he already has.

My life is no different. It went from being an obese child/teenager, to a young woman seeking love in all the wrong places, getting pregnant unexpectedly, thinking I was in the right relationship, the FBI storming my house, being left alone with a baby, visiting in a prison, realizing that this is not where I was suppose to be only after finding God in my life, doing something for myself, meeting the love of my life, buying a home together, having to gut it due to termite damage that was undisclosed, being laid off, getting married again with many family members thinking it was too soon and I was making another bad decision, getting pregnant with Joshua, his first seizure that changed our lives forever, traveling all over the country for answers, having to take public assistance because I could not keep a job due to all the kids issues, realizing that the govnt doesn't really help those in need, being blessed with Michael, missing his birth, knowing from the day he was born that he too had Mito, many other daily obstacles still in there, My grandparents dying, Hugh being laid off for over two years, George blessing our family, Hugh's father dying, George dying, Gabrielle blessing our family, and now facing loosing our home. My life has been no picnic but in there are all mixed blessings and trials and even some blessings come with their own set of trials, and some tragedy comes with blessings mixed in. For without something bad happening there would not be something good. I know I am not alone in all these trials, so many others face their own set and often times worse ones. This is why I have always taught the kids that we all have the ability to make a difference in this world no matter our life status. No matter how good or bad the situation though, I could always feel God's presence in my life and know that he is always at work even when I did not have faith.

This weekend Hugh and I went to the vowel renewal for friends of ours who have been married 20 years. At the dinner following I sat next to the minister who officiated the ceremony. We got talking and I was talking to him about the kids and our obstacles and he just looked at me astonished with all we have been through. I told him that Hugh and I should statistically be divorced about a million times by now. He looked at me and said that I was quite right but how he could feel God's presence in me even before knowing any of our story. We talked about things as if he was an old friend and he told me that God is working in our lives and even when it is hard to keep the faith and know that he is leading us where he wants us and he could tell that from the moment he met me. He asked me if I would be willing to talk to others and share our story and our personal faith and I told him absolutely. With that he told me he would pray for us and I thanked him, telling him that it truly meant the world to me.

I have realized that by sharing my story with others and the fact that they see I still have faith, has changed many people's lives. It was this weekend that it was also God at work through me. So many people would be ashamed to have been through all I have or feel some need to explain to others and justify the bad stuff as if we did something to deserve this all. In fact bad stuff just happens to good people and no one did anything to warrant pain and suffering, even the person who murdered someone. It is God's place not mine to judge, I don't know how God is working in their lives because I know for a fact out of bad there is good as long as you choose to see it. By telling my story I know that I am impacting others lives even when I don't know it because this is what God wants me to do.

Many people ask how in the world I have the faith that I do. All I can say is how can you not? I know that I am not strong enough on my own to get through all of these things and come out sane in the end. Before George died, I would have told you I would have crawled in a hole and died with him but now in fact I have not done that but rather found strength in it I never could imagine. It doesn't come from anything human because we are flawed and buckle under many life stressors and obstacles. God is in the tragedy and triumphs that come from those tragedies. God is there carrying us and rooting us on as we try to make sense of all that is around us just as a parent is for their child. I know often times my parents have not understood or agreed with my choices in life but they have been here no matter what. That is where God is, he is our father and wants the best for us but cannot save us from life and is struggles but he can root us on and be there when we fall to catch us as long as we allow him to be.

Right now we face loosing our house and having to move in with my parents. I can feel God at work in this and I have a feeling we are meant to move in with my parents although I cannot tell you why. We cannot see the future so this is when we rely on faith. Sometimes it is hard to know if you really are doing the right things and that is when we all second guess ourselves. Many people would feel that loosing your house and having to move back in with your parents would be a horrible thing and that it is a step back in life. I cannot see it that way. My mother is my best friend even during the times we butt heads and fight. Not everyone gets that sort of thing since my relationship with her is very unique. However, I see the joy and happiness that my kids bring to both of my parents and how much they bring to my children's lives. They were not always happy when I was pregnant and yet each child has added something to their lives and I am sure they look back knowing that I was just following God's plan for my life.

I've already started working on their house getting ready for us to move in. The boys are actually excited and can't wait to set their rooms up. We are trying to make this as much of a positive situation as possible. It is hard and it breaks our hearts in one way but also brings something good to it also. My father is retiring in another year and unfortunately does not have much in terms of retirement because of the military changing their retirement pensions into 401K and he missed the cut off by a year. Unfortunately, this put him in a bad spot because he did not have a whole lot of time to now save for retirement. With us moving in and helping with the household expenses, I know for sure that it will alleviate some of the stress especially since my mom was laid off about a year or so ago. It is also is going to be nice for them to be able to be grandparents in such a capacity since while I was growing up their lives were also full of struggles and now they get to just enjoy the kids in a different manner.

As hard as it is to move forward with change, since we don't know the outcome, it can bring better things rather than worse. It is going to take a lot of work on my part as I have to clean and set up not only my house but also my parents but I know I can do it. Hugh and I have really tried everything we can to save the house but it just isn't working. My plea to others has not yealded anything thus far so it has made me realize that I am meant to listen the the voice in my head saying it is time to move forward. Maybe this is all just God at work in our lives telling us that it is his will we move on from something so dear to our hearts. He gave up his son even when he didn't want to so a house is not even comparable. I know that as long as we are all together, that is all that matters, God will work the reset of it out in his time and not mine (although I really HATE that!) We are still going to need help with moving and the cost of the adaptations to my parents house but as always, I know that God provides and he will make it happen if it is meant to be.

Please know that God is at work in your lives even if you are struggling right now to just make it through each second of your day. It is ok to hate the bad stuff but don't forget to look for the good. Having a positive outlook on things is not easy and you don't always have to have it but do not wallow in the sorrow and pain or it will take over and you will become someone you are not proud of or happy with. When it is too much to carry, turn it over to God and let him carry the burden. Yet again, not something easy to do since we are all independent and our society calls for the very opposite of us. You are not a failure since there is no such thing, it is just something that didn't work out and that is ok. Find forgiveness of yourself because you are your own worst judge and God sees you completely different(try and remember how you would feel if it was your child in your shoes, and how you would still love them no matter what and not want them to think badly of themselves) Know in your heart, above all, that in everything, God is at work!