Tuesday, May 19, 2015

Scattered thoughts of honesty of my life and my morhers cancer

Almost a year ago we made a big decision. This big decision came with a lot of thought, excitement and some concern. The decision to move our family across the country was tough. The things that I would leave behind seemed so hard to give up. Up rooting our family, packing up seven people and nine years of marriage in just a few boxes, finding new doctors, not seeing family members on a constant base's. Family friends, cafe rio no but really I don't like seafood and there's no cafe rio! Now getting down to the wire to move, the things I would give up pale in comparison what I'm really about to give up. It all seemed so simple Dave would leave for  three months ahead of us to get started on his new job while I attended to the needs of our five children and packed up our home. It seemed tough but we were both willing to sacrifice some things for some amazing opportunities that would lay ahead . The time came and with many tears we said goodbye to Dave. I'm not going to lie how single mothers do it I'll never know. Much love and appreciation I have for them. These last three months has been some of the hardest months of my life. Physically. Emotional. Mentally. I knew it would be a difficult feat but I didn't realize all the things that have happened in the last three months would transpire the we they would, things that would make ones world completely turned upside down.

Now I don't share things to complain that my life isn't great that I'm not grateful for the many things I have been so greatly blessed with.  Or to have anyone feel sorry for me in any way. But a reminder to myself, my family, my children that we can do hard things that this isn't our first trial that we will face but some of many. As my three months of single motherhood began it was rough. I think the lack of father figure was hard at times on our kids to were they have tested me to no end. Warner especially,  he is a kid who's just needs his dad to be a constant.  It seemed the moment Dave left life just went down hill. And even worse feeling alone and not having my companion by side to cry with just frankly sucked!  A week before Dave left I had a miscarriage again. I have been so amazingly blessed to become pregnant so many times but at the same time have experienced loss and sadness. Losing a child is never easy. I have lost three. Yep you have heard that right I have been pregnant eight times. It seems that each time I hemredige, I end up in the E.R sometimes needing to be intapabeted and surgery. The last two times have been really hard on me physically. Emotional. Mentally. This one  more emotionally because there was no time to think about everything that happened. Dave was to leave that week and I needed to be ready to play mom and dad. Having many nights after he was gone crying alone and full of sadness. And as soon as I got myself together and got over everything what more could go wrong. Collins oh how I love my sweet Collins the joy she brings to our sweet family is immeasurable. She has been dealt with some tough cards to play in life and I only hope to teach her that you can win with a bad hand if you know to play them right. It was like has soon as my husband left crazy, scary things started happening with her. Things I wished my husband was here for. Second guessing myself and advocating for her that these breath holding spells are something more then what the doctors said they were. Watching her experience these acts of body  seizures and passing out. I have never been so scared as a mother wondering if she'll breath. As that came and went things settled back down but still crazy as ever. I tried to get back in the satel and get back to life as normal five kids,  therapy for Collins four times a week, teach art class at older kids school, speech for Warner and pack up house. That is our normal. As most know my biggest bomb shell came shortly after. Hearing my mom diagnosis with cancer is that world turned upside down thing I spoke of.  I thought what more can I handle I just can't take anymore.

When I meant I just couldn't take anymore I meant with all the different trials I have had in my life. And at the same moment I thought how can mom take on another trial so big in her life. She has been dealt her fair share. Now I want people to know how much faith I have in my Heavenly Father and would never blame him for anything he is what has been a constant guide in my life and someone who believes I can do anything even handing me and my family a platter full of trails and say's you got this! I couldn't imagine facing hard things without having faith in something. Not to bring up the past but to share how strong of a women my mother is. My mother born in  poor country having the opportunity to be adopted in Amercia and blessed with all that it would bring. She was blessed to come to a great family, a family were people admired my grandparents for all they did for all the seventeen kids they would eventually have. She has so many wonderful memories of siblings and family vacations. I love hearing about all of them. But in the same breath these were the parents who berated my mother and told her awful nasty things. Told her she was slow and stupid. To dark and should try to wash the dark out of her skin and would never amount to anything. I can't imagine being told that constantly by my parents the ones who are to love and protect me are doing the most damage. My mother has never made me feel that way. My mom would eventually marry when I was five and marry the only father figure I would ever know. My childhood wasn't a walk in the park, not your average childhood of fun, laughter and two loving parents but a home were cops frequented were drugs and alcohol were presents and a lot of domestic violence was being played out behind closed doors. Moments of watching my mother battered and left bloody on the floor. Locking my little brother in a closet just case my father would return. Peeking out the door wondering if I had time to make sure my mom was wake or knocked out. Dragging her to the room to help her clean up and running back to check on my scared little brother trying to convince him all will be ok not really knowing if I was ever really telling him the truth. This was life until I was fourteen. My dad left us and left us with nothing one day. Watching my mother having to start life all over alone with two kids. I'll never forget how hard this was on her. Putting me in a place as to counting on me to grow up fast to help because I was all she had. Sometimes resenting it because I just wanted to be kid. As my child googles have been removed and my adult ones have replaced them. There is so much my mom has taught me. Forgiveness has been one, we love my dad and are grateful for him that he takes care her has she battles her cancer. That they have learned to love each other and work together. Something my mother has always taught me is be grateful for everything including your trials especially your trials their is a purpose for them. She's right I would never change anything about my life it's had it's moment hardships. And along the way I have found the purpose of some of them. It brakes my heart that my mother has to battle yet another hrs trial. Stage 4 colon/uterine cancer is something I never thought would happen to anyone in my family. The thought of possibly loosing my mom will be one of the hardest trial I will ever face and I wonder if the many trials that have come and gone my life were for this moment. True honesty I feel like life just sucks sometimes and sometimes I just break down and cry in random places. Things now have gone from simple to complected, I'm now leaving my sick mother something I never would have done. The thought and feeling of abandoning my mother is one of the hardest decisions I have ever made I'll I've known is to step up and take care of things helping my mom playing other parent to my little brother is all I've ever known.

The last three months are now coming to a close and so much has happened, life has been one curve ball after another. We move next week and  I'm trying find the purpose to the all the trials I have been handed as of recently and feeling so blessed for my mother. I love her more than anyone will ever know. I'm leaving a lot more behind then all the things I thought were hard things to leave.

Thursday, April 23, 2015

So begins our journey

Do you remember when you were a little kid and having that moment when you realize your parents are going to die someday. I know my own children have come to me or my husband and with a tear in there eye, saying "I don't want you to die!" realizing that death is a part of life. I remember that childhood fear very well and maybe as of recently even more so. I usually tell them "mom's not going anywhere, your being silly!" I always laughed at the idea and think, don't they understand that I'm no way near old enough to die. And as I got older myself I realized the same about my parents and the fear seemed to go away. Until last Sunday April 19, 2015

If any one who knows my mother well knows how giving she is. Her willingness to serve is something beyond measure. Sometimes as a child it would bring me embarrassment but as an adult it has shaped my gratitude for everything around me. My mom has always put us and others first which is what a mother is supposed to do. But she has always gone above the call of duty. She is one to work herself into the ground until she has served ever last person, leaving her exhausted only to repeat her self the next day. Not thinking once of her self and her needs. I love and admire her for that.

Over the past year my mother has been sick. I know at times not sharing how sick she was with us. Playing cool so we would never worry about her. Still sick and coming to mine or brothers aid to help with grand kids and whatever else was asked of her. Around last Christmas we noticed that she was loosing weight and to us a lot. And I think as things worsened for her and symptoms became more apparent to others around her, it was easier to tell her self nothings really wrong and possibly more then that, a fear to go to the doctors and hear that there was. With her finally realizing so and my brother, I and our spouses telling her it was time to be seen. With doctor appointments in place, we were excited to get down to the bottom of all this, especially to finally see her out all the pain she was experiencing. Watching it affect her day to day activity's, and watching it deplete all energy she had. Unfortunately the two appointments she had didn't bring much news just some Ibuprofen and told a possible slipped disk. Crazy! we all thought knowing that something wasn't right and they had to be missing something. A little frustrated we waited to hear back about the labs that they had ordered, hopping that they would unlock the source to it all. Last Sunday came and a phone call to. My mom, wondering if it wasn't to much trouble if after she did laundry and cleaned her home I wouldn't mind taking her to the ER. Again my mother wanted to take care of other things before her self, which is a boundary we have learned not to cross. I waited as patiently as I could only wanting to take her NOW not before silly chores could be done. Seeing her in so much pain and praying that this time they have to find something. Waiting for sometime we were finally seen by such a wonderful ER doctor. Having him examine and thinking that this was something like swollen intestines, finally an answer to everything. They'll know how to fix it, give her the proper pain meds and we will be on our way, I thought. But it wasn't that simple. I am grateful for the Doctor's intuition to say let's do a CT scan just to make sure. Having to leave for a moment to check on my children in the waiting room, the nurse come out and said, "Your mothers CT results are back!" I quickly left my oldest in charge and ran back to her room to hear her results. I'll never forget walking into the room and seeing my mother in heavy tears and the doctor by her side comforting her. Quickly I asked what was wrong. My mother and doctor asked to call all my family to come up to the hospital and then the doctor would share what was going on. I tried to pressure my mom to tell me but I could see it was something I shouldn't push. I knew something had to be serious for them to ask to call and request family to come up. I ran outside, sad that I left my mom in a room alone crying and trying not to panic on the inside. My brother and Dad arrived quickly and we waited in the room until the doctor was ready to explain what was going on. The room was so quite all of us just staring at each other and you could see each of us on edge and my sweet mother trying lighten the mood with small talk. The time came and the doctor sat down with us a begin with all things that you know isn't going to wind up being good news. The BLOW was tough with it ending in loud sobs by my mother which lead to everyone in the room to break down. Our world that once was will never be the same.

They found two large masses in her uterus and fluid that does not belong thier as well as her lymph nodes in her spine and lower back are astronomically big. She is tired all the time and in a great deal of pain. Sleeping seems to make it all go away. In the next couple days will talk with her oncologist and talk treatment and find out exactly what kinda of monster we are dealing with.

So much thoughts and feelings at this moment that are for another date time. But I know that this isn't a death sentence and it can be beat and my family and I are ready to fight alongside every trail she will face. We will stay positive and optimistic but I wont lie that childhood fear that I shared in the beginning is there. It's real.

Thursday, January 15, 2015

The right thing for our family.

It's been a two weeks since we found out about Collins. Monday she was diagnosed with a few more things. She has two motor speech disorders. Dysarthria and Apraxia. Dysarthria meaning her vocal, throat, tongue, mouth muscles are very week. Aprexia meaning her brain thinks of the word to say but short circuits, not being able to use her motor in her mouth to get it out.
 Through all this I have been so blessed to see all the many tender mercies that have come our way.
I just wanted to share a one. My heart is full. Things I don't want to forget. Things that remind me, humble me, bless me and feel my heart with gratitude.
  About nine months ago Dave had come to me and said I think I would like to join my brothers out in Boston selling solar. Mind you we have done this before. Move to another state for a few months. For a job. But this time we wouldn't be going for a few short summer months. This time I had five kids. Both of our summer selling experiences didn't work out for us. I remember telling Dave "We are never doing something like that again!"
   This time was different. The feelings were different. I wasn't sure that I liked feeling at peace with going. I spent a day going to the temple, praying thinking, hopping I could go back to my husband and tell him, hey doesn't look like it's going to work out for us. Sorry but the spirit has advised other wise. Something I said once before we headed out to Connecticut for the summer. I sat there pondering hard, and wasn't getting what I wanted to hear. I mean, I was being realistic, I thought, and was judging on our past experiences. Those type of things just don't work out for us. But the harder I prayed something kept telling me this is the right thing for your family, you need to have faith. Then I thought OK maybe we could do it maybe I don't want to go because I'll be leaving everything behind like family, friends. I can't do that. I can't leave whats always been home for me. As days,months had past and the answer remained the same, calm and simple. I would try to pick apart the answer, questioning, how is this best for our family? But the answer has never changed. It's the right thing for your family!
     I excepted that we would move and kept putting it in the back of my mind. Will see what happens I often thought. Life continued. Having five kids sure keeps a mother busy, let alone two out of five of our children have physical disabilities which keeps our appointment book filled. The last two months have been crazy busy. I thought of moving wasn't really there. My husband how ever had been counting down. He leaves in a few weeks. Leaving me for single mother-hood for a few months.Trying to cram in Doctor. appointments so that Dave can be there with me, things he doesn't want to miss either.
          The time came to discuss Collins MRI with her Neurologist. And then it hit me! My tender mercy.  After explaining everything that was going on she asked Dave and I, if we would be interested in traveling to other states for services as other states services are more progressive. She continued to tell us how they send families all over to help with patients particular diagnosis. "Yes of course!" "What state offers the best service for what our Collins needs." we asked. (We had never mentioned that we would be moving out of state soon.) She began to tell us " Boston has the best services for what you will need for her." "Would that be something your interested in." Tears streamed down my face. My answer was clear. I now knew why the move was the right thing for my family! My tender mercy.
      I am grateful for these moments. I am grateful for the lord's had in all thing's, that he is watching over my little family. It has been so hard for the doctors to figure out what's going on often confusing them. I have sure gained an even stronger testimony that the lord has a time line for everything. Finding out when we did. This move. I am excited to get there now. And so excited to know Collins will get all the therapy she can. Being told by the doctors because now that she has a diagnosis she will receive services everyday instead of twice a month. So look out Boston and take that Dystarthria and Aprexia because this HT Cerebral Palsy beauty is headed your way and there's no stopping her and what she can do!

Sunday, January 11, 2015

Where to begin....

Where to begin.
I haven't blogged in so long.
 I haven't seen my blog in years.

As this week has been a rough one for us. We have had so many friends, family etc. call, pm me Facebook and extend  love and concern for our sweet Collins. I thought how do I go about sharing my thoughts and feelings. Do I want people to know about her? I certainly don't want to label my child and don't want others to do so either. My blog came to my mind and decided this was good time to bring it back and way to get out how I feel and to share with others, those who have asked "what's wrong!" So here goes nothing!

From the moment I had Collins there was something special about her. Not that my other children aren't special but from the moment I held her there was just this something, something I felt about her that was different.

As she stared to grow we noticed that she wasn't meeting milestones that she was supposed to. So many times every one around us would share stories with us like "my kid took a long time to do such an such"  but as a mom I just knew something wasn't right. As kind as people were to encourage me and say "she's fine, I'm sure you have nothing to worry about." In my heart. My instinct as mother. I just knew. At times I admit I would internally get frustrated, sometimes angry with people as I was often told, "she doesn't look handicap" " your making it to big of a deal." "You have to stop comparing her to your other children." I knew people meant well, but in my heart, well a mom just knows.

Visiting with our Pediatrician who agreed that something just wasn't matching up. So begin our journey of what's wrong and why. We started with simple things. X-rays. Everything was fine there. Secretly I was hoping all the things that had been said to us would prove me wrong and we would find nothing and I was just being and over dramatic mom. We did blood work and some other tests. Everything was fine there. As we continued down this path we just weren't finding anything as to why she didn't start sitting up until she was one. Why everything startled her and she would cry for hours. Why she had no interest in speaking. Why she choked all the time, once scaring me so bad I thought I needed to call an ambulance. She was so purple and I swear minutes had gone by that she wasn't getting any oxygen to her brain.
Why it wasn't until she was eighteen months she finally started to crawl, not on all fours but army crawl. Why we still aren't talking. Let me tell you something about Collins she is so smart. Often times doing things that surprised me. She wasn't meeting milestones but I knew she was a smart little girl and I just couldn't understand why.  At eighteen months we decided it was finally time to get involved in early intervention. They came. They evaluated, she scored so low on everything that we were approved. They couldn't tell us anything either as to why.

She made great strides in physical therapy. She made my worries as a mother a little less. All my what if she never, at ease. She was finally walking! It took her a year. She was progressing.  I was a proud mom. Now I don't want you think I never had faith in her, faith that she could do hard things. For the most part I am and optimistic person and a positive, up beat person. But as a mom you just worry. You want the best for your child. You want them to experience everything they can, to learn and grow.

Finally it was suggested to us that we visit with and orthopedic doctor at Shriner's hospital to be fitted for inserts and talk about a diagnosis. We meet with her and were given the diagnosis of  Hyper tonic Cerebral Palsy. An MRI was ordered. Wow, what did we just hear! When I think of someone having CP so much comes to my mind. But Collins didn't fit the mold of what I thought I knew about it. So many thoughts and feelings coursed through Dave and I. We went back to the car and both of us just cried. What did all this mean? What did this mean for Collins and her life? So many questions like, how did this happen? Collins had a traumatic birth. Cord wrapped around her neck, broken collar bone and a collapsed lung. All my thoughts raced to that day. Was that the cause? Did the doctors miss something? I wasn't sure how to feel. We collected our thoughts and reminded our self that we still hadn't had her MRI and slayed a prayer in hopes that her brain was not involved. December came and it was MRI time. Collins did so well even while getting poked for an IV she still was willing to give out hugs to all the nurses in the room, even the ones that poked her. If any one knows Collins knows she is such a sweet girl she loves to hug everyone even random strangers especially when we are shopping at Costco. Its her way of saying thank you for all the great food samples. This is something I love about her. She loves everyone and wants to love on everyone.

Christmas came, New Years came and we waited patiently waited for the phone call, the one that I wasn't sure if I wanted to hear. It came. The messenger on the phone was kind but his voice got soft and quite "I hate to inform you Mrs. Gallagher but we found somethings some brain Admiralties that are concerning. Things that we don't want to discuss over the phone. We need you to come in as soon as possible and meet with the Neurologist. Can you be here tomorrow." OF COURSE! Getting off the phone so many more thoughts. What are they going to say to us? Whats wrong that they just can't tell me over the phone? The next day came. trying to not read into things trying to not let myself go there. Our PT had said the day before we went in, sometimes when they call parents in like that it could mean something bad like a tumor. "Oh please not that!" I thought, don't go there Brooke!

We arrived and were taken back right away. It seemed like forever. Dr. Kerr came in and told us what her brain scans said. Some where in my pregnancy Collins lost some of her brain cells. Which means you have a right side and a left side of the brain and the brain cells or tracks are what connect the two together. Collins is missing half of what the normal person is born with. She wont get these back. We have a part of the brain called the Basal Ganglia, both of Collins BG are dysmorphic meaning that are shaped oddly. The BG is the part of the brain were it  forms habits and then maintains the repetition of the habit. It also controls motor and breathing. There are different parts of the Basal Ganglia one part in particular is more rounded then it supposed to be and larger in volume as well. Her head and brain are also not growing as fast as they should but so far not a huge concern for the doctors at this moment. Being told that there not sure if she will ever talk.

So there we have it. We will have to see the neurologist every 6 months to watch the growth of her head. Will be taking on a new speech therapist along with our wonderful other one. Collins starts a special toddler class or did start  last week really. And we will continue with our other three wonderful therapist at home.

We have so many questions. Lot of them which cannot be answered, but only time will tell what will become of Collins life. I have been up and down in the feeling department. Moments of tears running down my face wondering if she will have everything in life I wanted her to. I've done the guilt thing. Was there something I could have done different in my pregnancy? Feeling like not again. We already have one other child with a physical deformity's. Warner's cleft lip. Now I have another one. What have I done.

But because of my faith and what I believe in. Everything will be just fine!
I believe that Heavenly father has a plan for us, plans we may not understand. I try to look at the positive and am grateful that it could be so much worse. I'm grateful that cognitively she is just fine and she understands. She really is a smart little girl. I am grateful that when I am feeling down or scared about not knowing what's around the corner the Saviour is there by side to comfort me. I can feel it. There will be days that are hard for her. Days like now that we face every day. Days were she gets tired from walking and we have to carry her. Days were she is so clumsy because of her muscle control. I look forward to hearing her voice when ever that will be as much as I love her sweet signing I can't wait to her "I love you!" We will treat her like the rest of our other children except for she has a disadvantage that makes achievement difficult. That she can do hard things. But really everyone has a Handicap. Anything is possible and we will in courage her to work hard and support her along this bumpy road. Most of all it's this sweet little girl without knowing it, in courage's me to be her best mom I can. She has no idea what's going on. I love how she tries so hard to be one of the big kids. Doesn't want to be left out of anything, and try's so hard to keep up with them. It's this happy attitude that she carries around with her that I hope to always have something I admire in my two an half year old.

I am so grateful for My Husband. I know it has been hard for him. I feel so blessed to go down this path with him. Collins loves her daddy more then anyone. We really make a great team. There is no one better. I am so grateful for all the wonderful therapist that we have been so blessed to have in our home. They have worked so hard with Collins pushing and in couraging her to do anything. I am so grateful they have been there for Dave and I to support us call us to check on us after appointments. For hugging me when I cry. For loving our sweet Collins. We have been so blessed and are so grateful that the lord has in trusted us with this sweet baby. We are ready to dive right into this journey together and I couldn't pick a better family to do it with. Thank you for all your love and support. We are still learning so much about CP if you have questions please don't hesitate to ask.