*** disclaimer*** I wrote most of this post the day I got back from the doctors (May 2) and so some of the dates etc may not make sense and I feel I have made leaps and bounds from some of these emotions in just a few days. I wrote this for me to document a moment in my life I will never forget. I was not planning on posting this because I didn't want to make this a big deal even though it is a big deal for me. After word started getting out and I got so many people concerned with texts, emails, and sweet messages, I decided to share. I was just so surprised at how many people were interested and cared. It is also easier for me to tell the story once so I don't have to emotionally keep repeating it, as I am trying to not dwell on it as there isn't anything I can do right now.
Now looking back days later, I feel as if a lot of these feelings are a bit on the dramatic side, but at the time I wrote this post this is exactly what I was feeling and I don't want to forget it. Please know I have thought long and hard if this is something I wanted to share because I know people go through harder times and I don't want this to seem as a "oh poor me" post because I don't feel that way at all. I just know if this helps send any more prayers my sons way then I will take it. Who knows someone may have a similar experience that is reading this and it might be helpful to them. I am very hopeful this baby will be completely healthy and I believe in the power of prayer. I also believe God has a plan for each of us and I accept that.
(written on May 2)
I don't really know where to begin to write this post or if I even should. I know some people deal with things differently. They will keep things private and deal with things internally. I, however, am different. It helps me to talk about things and to gain comfort from those around me and my Savior.
I also experienced many blessings today and I know that they are nothing short of a tender mercy from my Savior. I would love to share what happened to me yesterday and my testimony of how grateful I am to be a member of my faith. This post is personal to me and I know some of you reading may not have the same belief system I have so maybe some of this won't make sense, but please just be respectful that this is MY belief, MY story, and MY blog; and, I am going to share MY testimony because this is what helps me. I simply can not share the events of yesterday and not include the spiritual aspects that I experienced that have increased my faith immensely. Don't get me wrong, this is a post I wish I never had to write or had to experience but I know through trials you only grow stronger. I take it as a compliment that my Savior knows I can handle this challenge even if I cry my eyes out thinking there is no way I can.
So let's start at the very beginning...
Last night (May 1) I had a conversation with Chase as we were laying in bed and even days before with a friend saying I wonder what my big trial was going to be. I often think of my blessings and wonder when something bad is going to happen…Anyone else do that? I know everyone in life has challenges so I wondered when and what my big trial is going to be. Chase always tells me to stop stressing over things you can't control or things that don't need to be stressed over. I agreed with him but I find myself still doing it. I actually found this great quote by a former prophet of my church that I posted on my facebook just the day before I got the doctor’s phone call.
Gordon B. Hinckley said:
" Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight. Even if you are not happy, put a smile on your face. 'accentuate the positive.' look a little deeper for the good. Go forward in life with a twinkle in your eye and a smile on your face, with great and strong purpose in your heart. Love life."
After reading this quote, I thought ya I need to be better. Here I am stressing over dumb paint colors to paint the nursery and if this pillow matches this or that, etc. I always knew I needed to get real problems in my life so I would stop stressing over the dumb stuff... I just didn't expect the next day (May 2) my life was going to be turned upside down by a phone call.
So now lets go to May 1st. I had my regular ultrasound at 29 weeks to check if everything is normal with the baby. Well I could tell the tech was being more vague than she was last time, but honestly I didn't stress it. She told me I had more fluid than I should and that his femurs were measuring short but not to be concerned. Of course I was a little concerned as any mom would be because you just want them to say, "He looks great, totally normal... etc." So after the ultrasound on the baby, they did an ultrasound of my gallbladder because I was having some issues, and they thought it could be that. Turns out I have gallstones and will at some point need to remove my gallbladder, so I was more focused on that issue than the health of baby to be honest.
Then today (May 2) I got word that there is a fire by my house. Really close to my house actually, and they were evacuating homes. (video here) So I was busy thinking of what I would pack if I had to leave and was chatting with other neighbors about what they think will happen to our neighborhood when I got the call from my doctor.
The doctor said, "Hi, Bridget how are you?"
me: "Um, well…I don't know you tell me, it's never good when you are calling?"
Doctor: " Ya, I don't like having to give these type of phone calls but..." (my heart stops and I swear I didn't breathe for a second) "Your baby looks like he has some abnormalities of the brain and I highly recommend you see a specialist ASAP. I have called and they are willing to fit you right in and that is really rare for them to do that, so I recommend you go."
Thoughts to self: Okay so she tells me not to worry but there is something wrong with the BRAIN... um ya okay, I will try my best not to worry... um NOT! (hopefully you sense the sarcasm) oh and this doctor wants to see you right away means there is something wrong. NO doctor would rush to see you if they thought everything was fine.
view outside my house when I was leaving for the doctor.
Once I got off the phone, I burst into tears and started frantically trying to find a babysitter for Jaxon so my mother in law could drive me to my appointment. I then dropped Jax off at a neighbors and just hoped she didn't have to evacuate with her 3 kids and now my son. I was praying the fire wouldn't get close enough to my house because I just left everything and knew I wouldn't have time to go to the doctor appointment and get back to get any belongings. This was just the cherry on top of many worries I had running through my head. What could be wrong with the baby??? what if this and what if that??? My emotional roller coaster started there. It was as if what I was seeing outside with the raging fires on the mountains, the ashes falling from the sky, and all the smoke is what I was feeling on the inside. It is hard to explain, but I just felt like I was living this bad dream and I would wake up.
As we were driving the back roads to pass the fires, I was talking to my mom who is on a mission in Hawaii. She mentioned I should get a priesthood blessing before going into the doctor appointment to calm me down. I called the missionaries in my ward asking if they had the missionaries of West Lake (the city I was in for my appointment) contact information. I finally got the right number and called them, but no answer. At this point I gave up. I just decided to continue and get a blessing after. So when we pulled up to the outpatient hospital, it turns out there is a LDS church right next door. This could be common and/or likely in Utah, but in California…not so much. My mother-in-law suggested we drive around the parking lot to see if any cars were parked and maybe someone was inside. No one was there :( We turned around and went back to the doctor’s office. Right as we pulled out of the parking lot, I got a return call from the missionaries. They were actually in the next door church’s parking lot just standing there behind this donation trailer.
In my voice message I never told the missionaries where I was, what hospital, or anything. I just called and told them my name and asked them to call me back. So the fact they happened to be RIGHT where I needed them was such a blessing. They said they felt prompted to come to the church parking lot and wait, but they didn't know why. I once again started crying at this tender mercy. They opened up the donation bin and there was an office chair inside (there were some cool vintage suitcases to I wanted to take, lol) I sat on the chair inside this trailer and received a blessing. At that moment I felt Heavenly Father was taking care of just me and only me. I know I am a daughter of God and he knows us all individually, but this was my first experience where I felt it SO strongly that it just brought me to tears. I have never felt so close and such a personal connection with him as I did when I pulled up to the church and saw those two missionaries standing there.
After the blessing we headed into the appointment. As I walked in they said they were expecting me and I need to fill out paper work. They seemed very sterile, as if this was just a another normal routine in their day, while for me everything seemed like it was in slow motion and I knew I was about to face one of my biggest fears. As I was filling out the paperwork, my hands were shaking so bad Chase had to take over and fill it out. I then had someone come out and tell me this is how the day was going to go... I was going to first see the genetic counselor and then see Dr. Damate (it sounds like "scotty" so thats what I call him because I keep forgetting his last name).
The genetic counselor came out and escorted us to her room. She was blonde and didn't look a day over 27. I was surprised at how young she looked. I sat down in the chair and watched her open up her file. At this point it was a big blur, it was like you could cut the air with a knife. She first asked me what the doctor told me the day before (May 1). I told her the ultrasound tech was vague and just said there was more fluid then there should be and his femurs were shorter than they should be but not to worry. She then took a deep breath which seemed to me like forever. She said, “Your doctor has recommended you come here because she and the other doctors in her office have looked over your ultrasound and they do not see a cerebellum in your baby's brain. If the baby does not have a cerebellum this would mean he would have Dandy-Walker Malformation.” When these words came out of her mouth my heart stopped. I have never heard of this disorder before, and I had so many questions. Oddly, at this point I wasn't crying. I was more curious as to what this disorder was. She proceeded to tell me more about it and you can read it for yourself here. She told me this is a physical and mental disorder, and that there are so many variations of it and only time will tell how serious it is. Then my mother-in-law asked what is the life expectancy, and the counselor said a third of the babies born with this do not survive the first year. I bursted into tears. Chase reached over and gave me a hug and was trying to console me. My husband was such a rock for me during this time. He was the calm one and if for one second I saw the fear in his eyes, I would loose it again. I am so grateful for him and his strength. The counselor then told us how my baby would need to get a shunt after he is born to drain out fluid in the brain and all these other things with this disorder. Honestly I cant even remember everything that was said because it was a lot to take in, but let's just say I was told things no mom wants to hear. He may never walk, talk, etc. She then spent the next 20 minutes asking Chase and I our genetic back ground, questions on our health, etc. The counselor was asking me questions as if I have ever smoked, drank etc when pregnant. I am so grateful for the fact that I have such a peace of mind that I know I didn't do anything to effect this baby. The counselor, despite telling me news I never wanted to hear, was really sweet and she was crying with me. I appreciate her and I do not envy her job.
After her questions, we were taken back to the waiting room for an hour. I was a MESS. My mind was going in all different directions and I didn't know how to process this all. I was starting to make a scene as I would be fine and then burst into tears again. Everyone seemed to be looking at me, so I left. I went in the hallway and just sat and cried. I called my mom and told her what just happened. She said she couldn't understand me through my blubbering and to take deep breathes. At that moment I wanted my mom SO badly. I am still so grateful I was able to at least talk to her on the phone as she consoled me. My mom kept telling me things like, "Bridget you are strong, you can do this, you are a Blaser. What better home for this baby to come to than yours." All her advice was great, but I still couldn't seem to pull it together. I just couldn't believe this was all happening. My mind continued to go in a million directions of how am I going to wake up every morning and not have this fear I would go check on him and he wouldn't be alive. I am only 25, I am not old enough to plan a funeral. I want to be back by my family where he will have cousins to go to school with him. How do I explain this to Jaxon? Will he be accepted? Will he have friends??. I mean, a million random, sad questions andthoughts ran through my mind. I continued to cry alone in the hallway.
I don’t know how much longer it was, but they came to get me and I was taken by myself back to a private room and they started asking me questions like if I have had an abortion before, how many past partners, any STD's, etc. I think they wanted me to answer these privately incase my husband or mother-in-law didn't know any of these answers. I was then told my options for this baby. Now they were in no way advocating anything, but just told me my options like abortion, adoption, more genetic counseling etc. Honestly, all I heard was abortion and adoption and I instantly became defensive. I said in a stern voice, "Even though I am crying, don't think for one second this baby isn't going to be mine and such a blessing to me. I would never consider any of these options." She then said, "nor did I think you should, I just have to legally tell you your options." I quickly realized I was being quite rude to this cute nurse and apologized. This nurse then took me back to the waiting room where another 20 minutes passed by yet it seemed like forever.
As I was waiting to go in to see the specialist, a women came in pregnant wheeling in her child that clearly had some mental and physical disabilities. Because the office was so small he was placed right in front of me. I looked at him and started bawling again. Not for a sense of poor me, but just so many emotions were running through me. From what a sweet spirit this boy is and what a blessing it would be to raise him...to how am I going to do this, I can't do this. I just kept saying I am not my mom, I can't do this, how can Heavenly Father think I can do this.
For those reading who don't know why I am saying “I am not like my mom” is because I grew up with a brother with Muscular Dystrophy. He was just physically handicap and was SUCH a BLESSING in my family. I know first hand what an amazing opportunity it is to have such a sweet spirit inside your home. I often feel bad others didn't get the same experiences growing up with him as I did. I just know you have to have a certain kind of strength to raise a child with special needs and I always viewed my mom as a saint... but I would never put her and I in the same category. I would only hope one day I could be like my mom or even a fraction of her. So all this time I am just doubting myself that I cant do this. Selfish thoughts definitely came to my mind and I was feeling guilty because I knew better. Why was I so upset, I know this would be such a blessing. Now just know when I say I can't do this it was more of a doubt in myself, not a – I won’t do this – because of course I would love this boy more than anything.
An ultrasound tech then called me in and started doing her measurements on my baby. At this time I was just laying with my face toward the monitor. I saw my baby. MY baby. I loved this sweet little baby more than myself, no matter what was going to happen next. The tech then left, and Dr. "Scotty" came in. He was very kind and said, "Now the genetic counselor talked to you about Dandy-Walker Malformation right?” I said yes. He then sat down and proceeded to talk about how hot it was in the room. I actually didn't notice because at this point I was just so happy to be laying down so I didn't pass out. It was a blur, but I do remember telling him how thankful I was for his time he spent getting his education so he could give people like me answers. Chase told me I said some other stuff and that I wasn't making much sense because I seemed out of it (Me say stuff that doesn't make sense?? Or, overly talk when I am nervous???... NO NEVER ;) HA, that is sooo something I would do!).
Chase said that the doctor spent a long time looking at the brain and taking measurements. At this point I was looking up at the ceiling just praying to my Heavenly Father to prepare me for what I thought was coming... a confirmation that my baby has Dandy-Walker Syndrome. The doctor then paused and said, "Hmmm, interesting" and then spent more time looking at one spot in the brain. He then got off his chair, opened the door and left the room for a short time. He came back in and said, "Bridget, look here... do you see that? (he pointed to a spot in the brain). He didn't let me answer before he said, "This is your baby's cerebellum.”
I immediately looked over my other shoulder to Chase. His mouth, mine, and my mother-in-laws’ were all open. We didn't believe it. At this point I didn't know what to believe. I was just told about 2 hrs prior that 4 doctors confirmed that my baby didn't have a cerebellum and now this doctor says he does. I instantly felt this sense of relief, yet shock. How could this be? I then asked how is this possible and the doctor said it all depends on the technology that the other doctor’s office had, how people read ultrasounds differently, and how they all havedifferent expertise. He obviously is a specialist and that is why my doctor sent me to him, so I believed it when he said it was there. I feel like I made a mistake at believing everything that was told to me prior to this. I was kind of mad that they made me go to the genetic counselor first. All this heartache could have been avoided. I asked the doctor why they do the genetic counseling first and why they didn't double check it all before I had to be told the doctors think he has Dandy-Walker Syndrome. He then said if there is no cerebellum they can confirm the baby would have that disorder, and as of yesterday’s ultrasound, the baby didn’t have one…or at least it didn’t show up. But now there is a chance he does have a cerebellum, or at least part of one and there is a chance he may just have a form of the disorder. Since the doctor can’t see how developed the cerebellum actually is, he recommends I get an MRI on the baby to confirm or deny. He said that he does still have some concern because he has some other issues that lead to this disorder but many other disorders as well. My baby femurs are measuring very short and the extra fluid around his kidneys and brain which can also be a sign of a chromosome disorder like Down Syndrome. He then recommended I do this blood test that is fairly new and safe, and can tell me with 95% accuracy if my baby has any of these 4 chromosome disorders. He said that because there are also the concerns about the excess fluid and the femurs and the cerebellum combined, I am now a high risk pregnancy. He also said a lot of questions will just remain unanswered until I come back in 2 weeks and can see thebaby’s progress and that we may not know for certain the severity of any potential issue until the baby is born.
The waiting is what is killing me.
At this point we leave the doctors and I am emotionless. I am not feeling anything because I went from such a low to a high to a maybe. The baby does have something wrong because of these other factors. While I was offered a number of other invasive tests, I decided no on most of the tests because they could cause a termination of the baby and/or preterm labor. To me,having just a peace of mind is not worth the risk. Whatever happens I am going to love this baby unconditionally and I can wait until he is born. I am not going to do anything that puts him at further risk. I did however choose to do the blood test. It just takes my blood and they can test for some of the chromosome disorders. I will be getting those results in 10 days, and then on May 16th I will be heading back to the specialist. After getting my blood drawn we headed back home. I saw all the smoke and fire and realized I completely forget about it. Luckily my house didn't need to be evacuated as others in my ward (neighbors who go to the same church as me) had. When I arrived home I just went upstairs and laid in bed, glad to be alone for a minute to try and process it all. I looked up online the disorder and learned more than I was told (or at least more than I remembered being told at the doctor’s office). I now had so many more questions. I started crying again, and just kept on crying. Cute Jaxon has always been aware of my emotions and always asks if I am okay. I am so grateful for such a sweet boy that made this part of my day so much better. He kept coming up to me asking for "echos" (eskimo kisses but he can't say it right and it's too cute to correct).
As I was putting Jaxon to bed later that night, I cried again as he knelt with me at the side of his crib to say his prayers. He laid his head on my knees and kept saying, "momma, you okay? I tickle your back." Apparently I ask him to tickle my back a lot ;) I just kept replaying the days events and it's funny how you see things differently after hearing your child may be physically and mentally handicap. Just the day before I was getting annoyed Jaxon was jumping up and down in his crib until it broke, and I now think how silly am I to be upset.
My new, unborn child may never be able to jump
I will give anything if he could only jump hard enough to break the crib.
My baby may never be able to tell me goodnight like Jaxon just did as I shut his door for the night.
I was thinking all these sad thoughts and just kept crying until I had nothing left. Around 1 am I fell asleep only to wake up an hour later to cry. This happened enough through the night that I had to leave the room so Chase could sleep. I grabbed my scriptures, my patriarchal blessing, and all the notes I had jotted down from the blessings I had received during this pregnancy. I read them all. I read until the sun came up. I just laid on my couch until my tears soaked the pillow.
All of the above text was written the day I got home from the doctor and early morning the next day. Now days later I am in such a different place.. I am way more calm and at peace with everything and VERY optimistic. May 3rd, the day after I spent most of the time talking to family, doctors, and insurance companies. I got a lot of my questions answered that I had the night before. After talking to some doctors, I got this impression that there is a lot more hope for a healthy baby than I was given the day I left the office and genetic counseling. Part of me feels there is no need to worry because they could be overly carefully and telling me everything to cover themselves, and really no one knows anything until the baby is actually born, right? It is one thing if it was still missing a big part of his brain as he was in the first couple ultrasounds but now the specialist found it so there is hope, right? I just can’t sit and worry about something that the doctors can't confirm or deny. There is no need in stressing or worrying about something that will be a blessing regardless of the outcome. Now remember, just because I say there is no reason to stress doesn't mean I don't and these feelings are something I have to keep reminding myself when I get down.
I cried the first day because I thought – how am I going to do this; I can't do this. I now am like – what a better family for this boy to come to besides mine? (cue the empowering music :) ...) I am strong. I have a loving husband and family. Jaxon will be such a good brother and this boy will grow up as normal as possible. Not for one second will he ever feel like a burden to our family because he never will be. What better mother for him to come to than to a mother who was raised in a home with a special needs brother who knows first hand what a blessing it is to have a special needs child in the home. My brother taught me more in his short life than I would have ever of learned on my own. How lucky am I to experience this twice in my life, and to have Jaxon experience this as well. My attitude changed from I cant do this, to a sense of excitement. I take it as a compliment to be chosen to raise one of God’s special sons. Now if he is totally healthy (which I pray he is and in my heart feel he can be) then what a blessing as well; either way it is a WIN - WIN!
I also found a lot of comfort from my family. I kept them updated through text throughout the whole day as I was at the doctors. Even though they live so far away from me, I felt their love and support. It was so comforting to see my family and friends rally around me and my baby, and offer to jump in a car at a moments notice just to give me a hug. I have called my mom more times in the last couple days to be consoled than I hope to ever have to do again. I am so lucky to call this special women my mom and so grateful she is willing to fly here to be with me for my next specialist appointments. My family will never quite know how much all their love and supports means to me. I find myself crying from time to time but for totally different reasons than before.
I cry because I think about what my mom had to go through.
I cry because I feel so overwhelmed with the love of my family and friends.
I cry for my baby and just hope he grows up happy.
I cry for my son Jaxon and how his life will change.
I cry for my son Jaxon and how his life will change.
This positive outlook I have has only come with the comfort from my Heavenly Father and the prayers I have received on my behalf. I will be the first to tell you I am a "look at the cup half empty kind of gal", an over-thinker, a planner, a "stresser" of things that don't need to be stressed over, etc. So I am even surprising myself at how calm I am. I look at May 2nd in a different way. If you had asked me the next day about May 2nd, I would of said that was the worst day of my life thus far. However, now I am so grateful for that experience because regardless of the outcome, and even if my baby comes out perfectly healthy (which I pray is the case), all that scare was worth what I gained. I never knew in such a short time I could grow so close to my Savior, my family, and learn so much about myself. I had a sweet friend of another faith facebook message me a scripture in Philippines 4:6-9 that basically says don't worry about anything; instead pray about everything. This is exactly what I have been doing and I feel it has helped immensely.
I write all of this now to share my spiritual experiences, to share what is going on in my life currently, but most importantly to ask any of you willing to include my baby in your prayers. I will of course keep everyone posted as I learn more, but in my heart I just feel everything is okay. Okay in the sense that either way will be SUCH a blessing, and I know my family will be happier with this boy in our lives.
On May 7th I woke up sad again. I know I am entitled to these days and it is something I will continue to go through until I know he is healthy. I got in my car to head to the doctors and I turned on the CD. I had no idea what CD was in my player. The first song to come on was “I am a Mormon, yes I am”. Apparently it was some children's church CD. As I pulled into the doctor’s office, the next song that came on was "When I grow up I want to be a Mother." (click on the link to hear the song) I lost it again. I just sat in my car, late for my appointment, crying for how this is all I have ever wanted was to be a mom and I am SO blessed to have another child. Healthy or not, he is a blessing. I tried for longer than I wanted for this child and I know many more never can have children, or are struggling to have another, and what a blessing I even get another. My mood changed from feeling sad for myself to being grateful. Now this doesn't mean I didn't stop crying....dang these pregnancy hormones. :) I am normally heartless and one tough cookie.
(Jaxon at the doctor’s office saying he is "reflaxing." He sure makes me smile even during hard times.)
When I pulled myself together I went into my regular doctor’s appointment. She just did the regular heartbeat check up and I didn't think I would be getting any new information. I just knew I would be getting some questions answered. She went over some of the notes from the specialists and there is more excess fluid around the kidneys and in the brain that I didn't know about before. They need to monitor it more to see if I need to schedule a shunt surgery (drains fluid from the brain) right after birth. Once again I am just told I need to wait and continue to watch and hope there is progress. If no progress, they wouldn't just suggest I get an MRI but highly recommend it because I would need to be at a different hospital with a neurologist. It is just a lot to think about and to deal with so I am so glad my mom who is a pro at all of this is coming to my rescue and will help me figure this all out.
On a happier note, the doctor did say since he saw the cerebellum, if he does have Dandy-Walker Malformation then it wouldn't be the most severe case that they were telling me about in genetic counseling. So at least for right now I don't have to stress, as I was on May 2nd, that the baby will only live a few hours, days or months. Now If he has a different chromosome disorder (which I should find out soon) then that is a whole different situation and I will go back to genetic counseling and learn what to do for this little guy and what to expect.
WOW THAT WAS A LONG POST! Thanks for all the love and support even from those that didn't know what was going on. I know it could be a lot worse than what I am going through so please remember this isn't a "oh poor me" post. Just strictly a informative post on what I have been dealing with as of lately.