We are Bella's Buddies: her family, friends, neighbors, teachers, and community. It is our mission to be there in support
of Bella and her family in the ways that we can..A hand to hold, a play date to have, a shoulder to lean on, a thought to share,
a prayer offered up, a cooked meal, or a monetary donation given. As her Buddies, we have an ardent interest in Bella's continued
care, in her recovery, and in finding a cure for this awful disease.
I’m trying to be more diligent in updating everyone on Bella’s health and our family’s endeavors. This week was a hard one for Bella. It began normal for her with her normal daily seizures and normal ups and downs but ended with a horrible scare. We had a great time at a family birthday party on Saturday at a karate studio and Bella was so excited to be able to join in with the kids and participate in the karate lesson. She has watched many of willows classes and has yearned to do it so badly, so this was quite a treat for her. It was hilarious. She spent more time checking out her backside in the mirror than actually throwing punches. She was doing a little runway catwalk and everything in that mirror. ( wonder where she learned to show off like that?). She had everybody in stitches. It was a lot of fun. However like most days, the fun was short lived. Saturday night Bella had the worst seizure I had ever seen before. Her body did things it has never done, she stopped breathing and I actually believed my baby was going to die in my arms. To say that out loud makes me cringe. Of course I’ve had that biggest fear buried in the back of my head but Saturday night I felt like it was going to happen and I never want to experience that feeling again….EVER!! I administered all of her emergency medications and about an hour later she let out a cry. At that point I knew she would be ok, but I also ached for her because I never heard that type of cry come out of her before and I knew it was because she was in so much pain from what her body had just endured for 60 minutes and my heart broke for her, because once again … I could do nothing to ease her suffering! She couldn’t speak and passed out until she was awoken 4:30 am Sunday morning with more seizures. It just isn’t fair and I know I say it all the time … But it isn’t! She has never brought pain to anything or anyone in this world yet her life consists of so much of it. So that is how the week ended. I got some disappointing news regarding the house but also some encouraging news that all the work my dear friend Patricia has poured her heart into, is beginning to pan out. That is one thing I cannot complain about. Angels have been coming into my life and for that I am blessed. I have become quite the cynic lately but it’s hard to be cynical when I see people care so deeply and some don’t even know us personally. It’s an amazing feeling. one thing that really impacted me this week was an experience that I am certain happened for a reason. I was getting some of Bella’s oxygen tanks picked up because I can’t afford to have the permanent tanks in the rooms anymore… Instead we have switched to portable tanks in multiple rooms. When I answered the door a man stood there and he seemed to look right into my soul. His eyes were piercing and almost made me feel like I had known this man previously somehow. He began telling me that he had 6 children and that he would do anything for his children. I agreed and said, I too will do anything… I have tried everything and I continue to search for everything. But then he said ” stop searching , your doing everything possible. Your world rises and sets on your children .” Me being the cynic was thinking…. ” how does this guy know what I’m doing.. How does he know what we’ve been through.” As I was thinking that he asked for my hand. He grasped it tightly and began to pray. He closed his eyes that were actually tearing and asked God to watch over me and the children. He asked specifically for help financially and to give me the strength to continue down this hard path that life has led us down. He brought tears to my eyes and told me I now had to lean on God and He would guide us from here on out. I said, ” how can I trust Him when Bella has been suffering for so long with no relief.” He then told me to be specific when I speak to Him. Tell Him exactly what you need…. Then the oxygen man, left as quickly as he had appeared and I felt that I had just been visited by an angel in disguise. It was a feeling I can’t quite explain. But I guess it’s those moments that aren’t meant to have an explanation for. I guess it’s those moments that we just trust … No matter how many times we have been burned … It’s those moments that tell us to allow ourselves to be vulnerable and let down the wall a little and … Trust! So this week I will be specific when I am speaking to God and maybe my heart will become a little bit softer to let Him in. Because He knows better than anyone that I need all the help I cam get at this point. Love to you all!
Things have changed quite a bit since my last post. Bella’s health continues to decline while still taking all the numerous medications. She now wears a helmet because she falls during her drop seizures, I try to be by her side at all times but sometimes even within arms reach I am unable to catch her. It’s been heartbreaking to see her. She’ll seize and then get up with bumps bruises or cuts from the falls but not even know what is going on. I can’t believe she going to be 10 years old. It doesn’t seem possible. I wish she could tell me how she feels, or what she needs or wants. I wish she could express herself. There is so much I wish for her, even just experiencing everyday things. Its just not fair. Bella has been on every medication available, none of which have worked. She still takes 7 pills day and night. As you know, her devastating double craniotomy brain surgery was unsuccessful and we were beyond devastated. But then all I could think was .. What if they removed a part of her brain… And she wasn’t my Bella anymore? What if her smile was not as bright or her hugs not as strong? At that point I swore never to do that to her again. After seeing the doctor in August we were given slim options .. We really had run out of options. We were told they could split her whole brain in half… But she would still seize, it would just keep the seizure on one side of the body. I knew that was not an option… We have run out of options. After seeing all the hopeful news articles about medical marajuana helping children with severe epilepsy we have decided to try and go that route so we are fighting the governor and the laws to make this more accessible to our suffering children. But again we were told to not get our hopes high because her epilepsy is just beyond controllable. Her father and I have divorced which has caused major financial strain on the children and I. Bella requires constant care which makes it impossible for me to work so each month has been a struggle for us. Unfortunately we will most likely lose the only home these children have known… So the past year has been extremely hard on all of us with the divorce, the financial strain and Bella’s health. Tate and Willow continue to be the best brother and sister and help me and their sister whenever possible. Tate began high school, I can’t believe it. Worrying about the house has been on my mind daily.. If we were ever to leave this town than Bella would have to leave her special needs school, because we would be switching districts. We fought for years to get her in that school so it would be devastating if that was to happen. We’ve had some angels come into our lives and have helped us in getting us some much needed appliances that were no longer working. We’ve had friends doing everything they can to help us in every way. In that way I can say we are lucky. Now we just need to figure out Bella’s next step in this new route of medication and hopefully our other problems will somehow get better. Peace and love!
We all say that Christmas is a time for giving not receiving but it is also a time to reflect on what is important in our own lives. It’s funny, I went to the store to get a gift and I was watching as people were pushing and shoving and so wrapped up in their own little world. It amazed me that not one person smiled or held the door open for the person in front of them. It was sad. Maybe being in the situation that I am in, I have truly learned to cherish the little things. Not many people pray that their kids will be well enough to stay up to watch frosty the snowman. Or how lucky they are to sit it the pizza parlor and have a family night. I guess it’s all relative and unless forced to live it one may never know how lucky they truly are to have healthy children.
We took the kids to visit Santa and willow asked him to make Bella better as her Christmas gift. The Santa was taken off guard and didn’t really know what to say so he gave a ho ho and then asked Bella what she wanted. Bella stared at him like he had 3 heads and tried to pull his beard, I’m sure we were topic at his dinner table that night. But I found myself proud of willow but sad for her too. I know how hard it has been to watch bella suffer daily getting worse each day, but I am an adult and can somewhat cope… Alittle. But I can’t imagine her being 5 and Tate 13 having the same weighing feelings I have, on their little hearts. Time has passed and Bella has not gotten any better but seems to get worse by the week. I am trying to enjoy all the little things bc it has become so hard for her. The doctors have said that the seizures have finally started catching up to her brain and are causing much more brain damage than she previously had. That was a very big blow to me this year. Dont get me wrong, in my heart of hearts I knew that she was less responsive and at times aloof. Her behavior has become unmanageable and she has needed to be put on behavior meds in addition to all her other meds but hearing the doctor say she was indeed brain damaged from the severity of the seizures, made Seab and I feel like we were hit with a ton if bricks! Thinking it and hearing it are totally different ballgames.
I have found myself questioning god and at times very angry. I don’t understand why children have to suffer and haven’t really gotten many answers to why, but it has made me question my faith. But maybe during the Christmas season something may help to bring my faith in god back into my life.
I have decided a lot lately. I am going to do the things I have always wanted and going to live the life that I am meant to live. My dad pointed out to me that we have 1 life to live, that’s it!!!! And when it’s done, it’s done. And no one knows that better than me. Bella may be very sick but she so deserves happy times. So we have decided to pick ourselves up and do things that “normal” families do. It will be hard but we’re going to try. When I remember my childhood all the memories that I have are only happy ones. Happy holidays, happy vacations, happy days!! I think what memories my kids may have of their present and past childhood and I’m not sure there is much happiness. I think that is the greatest gift I can give to them, happy memories, joyful moments, laughing and loving. So there will be many wrapped gifts under the tree for Christmas but my main gift is to give them the childhood they deserve filled with happiness and love!!!
When I sat down to write this I became overwhelmed by the feelings that I had inside. It has been a very hard road for us, and asking for help is something no one ever really wants to do. However, we never even had to ask. You are all so wonderful and have time and time again proven to us what compassion and empathy truly are. When I entered the cafeteria on Friday night, I was overcome with what I saw. It was packed with moms, dads and children all working so hard. People were there that we have known for years, while others were people we had never even met. And you were all there because of our little girl. I was not surrounded by strangers or even friends that night, I was encircled by family.
There are no words to even express our gratitude for all that you have done for us. I feel like you have all let Bella into your hearts and into your families. I had people telling me that every night at dinner they said a prayer for Bella. I had little kids giving us their own allowance because they wanted to help her and our family. What can I say to that. A thank you, is not suffice. Of course I wish things were different and that Bella was not so sick, but throughout her life we have met so many people. We have made friends that we never would have met and we have formed lasting relationships that are genuinely built on love.
People say that things happen for a reason, or that God only gives us what we can handle. Believe me, I have spent countless nights wishing it was I that was sick and questioning God, for allowing a child to suffer. And I still continue to question that, but I have seen God appear in other ways. Growing up I always loved the poem “Footprints”. I even had it framed on the wall of my childhood bedroom. It was about God always walking beside a man throughout his life and the man seeing two sets of footprints in the sand when he reflected upon his life. The moist poignant piece of that poem is when the man questions God, and asks why at the most troublesome times in his life he sees only one set of footprints in the sand. He didn’t understand that why, when he needed Him most, He would leave him. God replied, that He would never leave and during those times of trial and suffering, when the man only saw one set of footprints, it was then that God had carried him. For me, each of you have carried us in some way. Your actions have sincerely taken my breath away.
Yes, Bella is still unwell and who knows what will happen in the future, but we are still so incredibly blessed. We have an infinite amount of people that love our Bella and have let her and our entire family into their lives.
We all have days that are filled with rain, where we just wish for the sun to shine. But I was told that if we never had rain, we could never have a rainbow. For me, I could never get through each day if I didn’t think of that rainbow. But I have come to learn that you are all standing under that same rain cloud with us, and you are holding the umbrella. And for that little moments when the sun does shine through, we have seen your love and support.
So I hope that in some way, I have expressed how truly grateful we are. A mere thank you, could never encompass what we feel inside. So, from the bottom of our hearts, we want you know that now, in the most troublesome time in our lives, it is all of you that are carrying us.
Love to all,