Saturday, April 30, 2016

One Mother's Story

Introduction of Self and Family

Want a great bio?! I know, who ever can write their own bio and still feel good about yourself after deserves a metal. I wrote my bio. I read the 3 sentences, then messaged one of my older brother's who is away to the islands for med school, and said simply. “I suck.” He said send me what you have. So I typed the 3 sentences, and he said, “Give me 2 minutes!” And then he sends me this bio that made me just cry. Then, he messages, you are way more than any bio, Paisley. That is where I am, as a parent of a child with Severe Hemophilia. I have become accustomed to this lifestyle. Arguable numb at times (which is a front by the way). It never goes away, it's always there. I don't ever wish he didn't have it. Because I feel defeated by it if I dare speak those words. I don't ever want him to feel defeated, much less by something that makes up apart of who he is. Don't get me wrong, he is also more than a bio, he is more than Hemophilia. He is my son. And he is not defined by his bleeding disorder. He is intelligent, he is an artist, he is a “master builder”, he is silly and serious, he wants to join the service someday. He is My Hero.

Justin's Diagnosis

Justin had a normal pregnancy. He was born at 40+ weeks. His due date was 06/06/06. He waited a week and came on the 13th. So now someday will be celebrating a Friday the 13th birthday! Anyway, he came and we were just beyond excited! Everything was going swimmingly, until I got up to use the restroom. I saw blood on my chest, and quickly realized it was coming from Justin. And that is where our hemophilia story begins. Justin's PKU heal stick was bleeding. The nurses there said I was opening it every time I fed him and told me to be careful how I was holding him. I felt horrible. I can't even hold a baby right?! So they sent us home, telling me not to worry about it but continue to change his band-aids. So there I am not trying to be a over sensitive, naive, first time mother. He continued to bleed. We continued to change the band-aids. The next morning I wake up and panic. He never woke in the night for me to feed him! He was awake but lethargic. I was so scared. Opened his swaddled blanket and there was a lot of blood. I did as the staff from the hospital said, I didn't go to the ER. I went to our assigned eds. I walked right in without a call or appointment. I opened the blanket & the doctor only spoke Spanish! What are the chances right? She started telling me with urgency to go. I could only make out building with many colors. Needs blood. I wrapped him back up and my sister was driving. I didn't put him back in his car seat, I held him. Tighter than I have held anyone.  I had no idea what building we were looking for. But we got on the 51 and drove. Then, there it WAS, THE BUILDING OF MANY COLORS. PCH (Phoenix Children's Hospital)! They rushed us back and did an iv in his head. And this is when I first let out a giggle through my tears. His party hat. I can so vividly remember that hat. They gave him this medicine, and he stopped bleeding. I said, “I want that. I need to know what that is.” The nurse smiled and looked up at me and said, “Oh honey, you're going to get a lot more of this.” Boy was she right!  .........

After all that, we started our adventure that is hemophilia. We are forever grateful for our extended family, our first line of defense, our Team of supporters at the hemophilia Clinic. Some of the scariest words I can remember from one of our first appointments was, “You are going to be his biggest advocate. You will be informing doctors/nurses of hemophilia. At times you may know even more than they do.” What the heck? So empowering, yet at the same time, terrifying. Terrified. What a responsibility to take on, a child with a chronic illness/ disorder. Who am I to handle any of this? I suck. And that's where our extended family comes into play. I have my immediate family. I have Chris' immediate family. We are lucky they are as supportive as they can be. But our clinic family is unbelievable. I realized, very soon after and continually throughout the past 10 years that they have my back. Then, we were embraced by the AHA! Another amazing extended family. And they have been there every step of the way.

I think that's what I appreciate so much about hemophilia & the community it has built. It is undeniably unpredictable. Yet, it remains to be under control, and that's where I feel lucky that he has severe. We are proactively treating him. What a wonderful thing. To also know that I can at anytime get a question answered, a fear calmed, and the support to serve my sons needs. Knowing this helps empower me as Justin's in home care-taker/advocate. That is not always the case in other areas of chronic illness.  Most of my “friends” are now other mother's with children with chronic illness, medically complex kiddos, or still to be determined cases. And believe me when I say that the support my family and son have received has been unparalleled. A lot of these mothers don't have support from their families, or even at times, spouses. So being able to go to the clinic and feel understood helps me to be able to learn, focus, and listen to and head the guidance of  what  the pros can teach me.

Justin's Port Placement

Fast forward a year! It's another transitional time! Port placement. You know they prepare you as much as they can before. Which is all truly awesome but when your first attempt at sticking the fake baby with a needle, you break the needle. It can play some pretty messed up mind tricks. ... Scary handing your child over to have a necessary procedure done. And once he comes out, there is no turning back. Crash course of everything you have studied for is all coming down on you. All the little steps, mixing, washing, and bracing yourself for the real deal. That's where the little nasty affair happens. PIC Line. I was forewarned. Not to fall in love. Oh but I did. I fell hard.  And needless to say, I then grew into the port after about 9 years.... It took My husband and I and our 2 older girls to give his medicine. Chris holding, the girls, blowing bubbles and trying to comfort him. I infused. Then, it all starts becoming life as you know it.  A few years pass, and we are pregnant with our second son. All the preparations of having a child, maybe a boy, with that chance of hemophilia. Then, that's when we learned he was no longer coming as planned. Robert, had Trisomy 13. We delivered him still. Pure heartbreak, and we embraced it for what it was. That is something that having a child with chronic illness kind of prepares you for. Nothing is ever, as planned. Never again really. We slowly started to gather the pieces and get back on the roller coaster of everyday life.

Justin's School Beginnings

Justin didn't do preschool so kinder was our first attempt at breaking out into the big world of normalizing him. It can be a little scary and overwhelming sending your little one to school. But then, you start thinking of how do I explain this in a not so overwhelming way to the teacher and school nurse. Before I could even get nervous about it, we were contacted by the social worker that has helped us each year up until this past year with introductions. What a relief! She had everything printed up and was there to really truly educate the staff. And show support to them for me. Lighten the load. After each year I was able to be more and more comfortable and use her as a model to what I would do the following year. This past year I went it solo. I felt comfortable doing so because not only had I sat in on a couple but because she was only a phone call or text away to help. Once again, having that support to fall back on is so important in all transitions of hemophilia. I was never made to feel as though I should know this by now, or when are you going to start taking this on like a big girl. It was always, are you sure, we don't mind, it's what we're here for!

While Justin was in kindergarten, we were happy to be able to welcome Cruze to the family. Cruze didn't have a smooth as entry to life. The entire pregnancy was nothing but stress.  They saw red flags all over. Heart, GI, kidney's, bladder, 2 vessel umbilical chord with a cyst. And really low fluid throughout. And just other things, it was easily every week I went in, there was something new. We were prepared to not be bringing another son home. But we didn't give up. After much discussion “Suggestion” of terminating him from the doctors, we didn't. The fluid that was surrounding his organs including his heart was of concern. But even more so is if Cruze were to be born with hemophilia. Once again, the support our family received from the clinic was amazing. They helped me advocate for Cruze's life and with his best in mind. Thanks to them I would be delivering at a hospital more fitted for our families needs. And it paid off greatly. Cruze was tested immediately and did not have hemophilia. But his slew of other medical issues that came to surface in time were relevant. I didn't have to be separated from him the way we would have been otherwise. Cruze is in stage 3 kidney failure, and progressing. His GI issues are still under surveillance. He actually goes in for his EKG tomorrow and shortly after an ECHO because his kidney disease has now caused high blood pressure which we have started treating. In his short life he has had multiple procedures, fixing his kidney reflux being one. One procedure where he actually stopped breathing under anesthesia, that's pretty scary. He has had all sorts of therapies and still continues therapies to help him today in his developmental preschool. He is vibrant and looks up to Justin in every way. As we are still figuring Cruze out, we are just trying to do whatever we can to help him become self sufficient. I feel truly blessed with all the things that were seen in his ultrasounds. It made it so much easier, rather than trying to convince doctors of what was happening, that we were being pointed in the next direction.

Our youngest daughter, Cali, who is now 2. She was watched closely during pregnancy, just because of history. But she came right on time. Without a hitch. I was able to be at home at 24 hours. She had some food protein allergies, similar to Cruze, but no where as severe. And seems to be developing right on track. She is the only one in the house not taking medicine. I think she feels left out at times.  That's the thing with chronic illness, and the awesomeness of the Hemophilia association and hopekids. She is included in those activities. I think we have always tried, along with the older girls who are now 20 & 17, to not let their brothers' medical stuff drown out their spark as well.

Port Removal

February of last year Justin's port has had it. He had a good run I feel. 8 years! It was time for the big jump. Probably one of the scariest things. That means I was once again in the hot seat to learn something so out of my natural range of being Mom. Time to start finding those veins. And once again our support system was there every step of the way. There were many times I felt like I can't do this. But with the much needed encouragement at the clinic and support through many mini meltdowns from failing to hit a vein the first, second, or third time, we were on the learning curve. They all had so much patience with me. At a point we actually had some help from the therapist there in clinic to help Justin when he was having trouble hitting. Not to mention, Justin was my biggest cheerleader.  I can't count the times Justin would positively encourage me, probably also secretly trying to convince himself at the same time that is was all going to be ok.

Justin’s Camp HONOR

I wasn't in the hot seat for long though. A few short months later Justin was going to be attending his first year at Camp HONOR! Camp Honor is by far one of the greatest upsides to having hemophilia. I know this, because when I asked Justin his favorite part about having Hemophilia this was one of his top 3. Not only is independence bread there, but the normalizing of his life, is at that camp. At camp he learned to administer his own medicine. At the same time, building bonds with his peers. Surrounded in an environment of kids of all ages that face similar obstacles.  What a life changing experience. As I was waiting at the end of the week with no expectations. Just hoping he had a good time and felt independent while away. Realize that was the very first time he had been away from me his whole life for more than a night. When the buses come to a stop the parents are anxiously waiting outside the doors to greet their children. I was one of them. He got off the bus and held up his stick! I knew right then that he had braved the first self poke that week. The pride on his face, filled my heart with gratitude. Something I could not give to him was absolutely provided to him. I then waited to get to the truck to cry tears of gratefulness and happiness, mixed with a little sad that this is his life. He has continued to give his own medicine, for the most part, regularly. He has hard days, when he cries, or he misses and feels the failure and I try and pick up those pieces by helping him. But he was encouraged to take the leap.  And it has been a successful transition so far.

Our family was introduced to the AHA right away. Our family is not anyone who would search out a support group. They reached out to us. I am so thankful they did. Our medical staff is like I said our first line of defense. But the Association is what brings out the positive. Providing the extra support and family opportunities to educate ourselves in the confusing world that is medical. Hemophilia is truly a family ordeal. One is affected, all of us are. The association gets that. The hemophilia community is so important. The relationship we build with  the association staff, our nurses, and drs, and in Justin's case his study nurses is huge. It encourages us to advocate on a bigger level, help bring awareness, it also validates what we know as parents already. Our children & their condition matter. The efforts to make his life easier on all levels does not go unnoticed. Every time we have gone in for a visit in clinic and association, is always educating and uplifting.


Something about having children with chronic illness and other complex things is attending family functions. Simply going to the movies, going to the grocery store, being a regular at the hospitals is exhausting. It's emotionally and physically draining. Even mentally preparing the night before, not sleeping before or after tests have been done. Waiting for results. It takes a toll. It is hard to not be overcome with emotions at appointments at times. You have to keep it together. That's where survival as a parent or caretaker comes in. Wanting to have a busy schedule of simply sports, karate, music or dance lessons be what is occupying your down time. Not medical hardships. So when a friend of mine that I had met, her child was chronically ill. She mentioned to us that maybe HopeKids would be something we might be interested in. (Hopekids is for children and families that have a chronic illness.) We thought, oh well it's worth a shot right. So after my friend nagging me over and over to send in our application, we were accepted into the HopeKids club. When we as a family can attend an event and not be worried if it is something our kids can attend and participate in, it's so much more relaxed. It's very similar to attending an AHA event. There isn't going to be something there my son won't able to do. It's a hemophilia friendly environment.

Boot Camp

Which leads to my next example of the greatness that is made available to Justin and others.  Justin and I were given an opportunity to attend a “Boot Camp”. This “camp” was held once a week for a couple of weeks. It was after hours in clinic. The boys that all went to camp together were able to revisit that in a more intimate way. While at the same time the parents were given support and information separately on different topics each week. One night I couldn't help but feel something so awesome. Justin had gotten in the truck and as usual we went over what we learned that night.

He said: "Mom, a boy was crying tonight.”

I  didn't know where he was going to go with this so I waited.

“He cried, Mom. He cried just like me. And when he started to cry another boy told him 'it's OK, because I cry at home too.”

Right at that moment it was just what Justin needed. His heart was softened for that boy. He completely understood him. As well as being completely understood himself. At the completion of the Boot Camp they received patches and a banner to showcase their accomplishments on. He proudly has this hung in his room and displays his stick from Camp in the guest bathroom for all guests to see.

These are the experiences that are necessary in order for him to grow. In order for him to be a little braver next time & even try a new vein. In order for him to be independent, he has to be given these opportunities to test his limits, but feel safe enough that he knows his team is there for him to catch him or cheer him on! I know Justin is young, and we haven't been through all the transitions that are yet to come, whatever they may be. I can with confidence know it will be OK. The biggest is behind us, and him independently administering his own medicine & his knowledge of hemophilia, in my eyes as his mother, is the most important. And anything that is waiting in his future in regards to hemophilia, it will be OK. In the past 10 years treatments have come so far. To imagine what he will be apart of in his lifetime is exciting.  With the support team that he has grown to know and that we all love is a very big part of that. Now that we are expecting our last child, who is a boy. It's comforting to know, if he is born with Hemophilia, that we have this community already as a foundation. And at the moment he is born, our hemophilia team is going to be right by our side.

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