I have said over and over how my daugher has saved me more than she will ever know. And how much I really hope that she never does truly know. Because if she knew that means that she has children of her own and she is suffering from these awful illnesses just like me. I don’t want that life for her. And I pray that she escapes this hell. But that small, vivacious, happy, loving little girl with the infectious smile has saved me from the depths of darkness and kept me from giving up and giving into this illness. She says the craziest things that make you laugh and her laugh alone is enough to make you lose it. She also has her dark moments. She fights her own battles and own illnesses but she rocks it just like the rock star she is! She doesn’t know a life any different from this one like I did. So her illnesses have never slowed her down or stopped her. They have never brought her down or made her feel different. This is all normal for her. I’m so happy for that. But I knew that there was no way I could leave this world and leave her alone without her mother. Yes she has an amazing father who would undoubtedly take care of her and do an awesome job but she needs her mother. And I need her. When I was so sick at the beginning I truly believed I was going to die. I cried to my husband every night in bed and would tell him I know I am going to die. But please tell my baby about me everyday. And tell her everyday how much I loved her and wanted to be here with her. He would always reassure me and tell me that wasn’t going to happen. I didn’t believe him. But you guys here I am. And I know in my heart that I wouldn’t be if it wasn’t for that gorgeous little girl that stole my heart as soon as I saw the positive pregnancy test.
Don’t get me wrong I have given up more times than I can count. I have screamed, cried, threw fits, hit things, broke things and just collapsed in despair knowing that I just could not do this anymore. That I couldn’t take not one more day in this life. I couldn’t take one more day not being able to eat. I will look at others eating and I break inside and I just get angry and sad and I give up. I couldn’t take one more day of reactions or not being able to get out of bed. Of not being able to take a normal family vacation. Hell just a normal family outing. That I couldn’t take one more day of not being able to eat out at a restaurant or join my family or friends at one. That I couldn’t take one more day not sitting down for dinner with my family. That I didn’t want to have to hear my 5 yr old explain to strangers that I can’t eat and that’s why mommy has to drink that drink. Or hear that she has asked someone if mommy is going to die.
But then I look at her and I know that I could never leave her. That I don’t want to miss one second with that amazing little girl that my husband and I created together. She was our miracle child because when I was pregnant with her all the odds were against us. Both of us were in danger the whole time. She was most likely a twin and her twin didn’t make it. And despite her implanting wrong into my uterus, despite the hemmoraghing, despite the fact that I went into preterm labor with her at 6 months (we thankfully managed to keep her in until 36 wks) and despite going into preeclampsia at the end she survived it all. Not only did she survive it but she thrived. Now we are realizing that maybe she didn’t completely escape all damages from all of that. But if you knew her you would never know. She survived all of that and was our miracale. And that miracle has brought me so much strength. So I might give up for a little while but my fight always returns. I fight because she needs her mother there to do her hair, to talk about boys, to get her through her first heart break, her first dance, her prom, her wedding day. She needs her mother there to call when she has children to walk her through all those hard things that she will definitely go through. To tell her that she is doing a great job and laugh a little while she freaks out. We need each other. And I will use every breath in my body, every ounce of strength I have and will fight to be here for all of those things because that is what she deserves. These illnesses have taken so much from me but I refuse to let it take that away from me or her. As long as I can help it. As long as I am breathing I will fight because of her. She has lent me her strength in life and doesn’t even know it.
And now I am pregnant with her little brother. He was not supposed to have happened. Lol We had decided that we were not going to have anymore children because it wasn’t safe for me. We knew we weren’t done having kids so we decided to foster to adopt. You guys I was heart broken that I was never going to have another baby inside of me. That I would never feel them move or kick, or hear a heart beat or see them on a sonogram. That I would never get that moment in the hospital. It just so happens to be my favorite one. When they enter the world and you finally get to meet them AND then you get to share them with all the loved one’s in your life. You don’t know pure joy and happiness until you have experienced that moment. In those moments everything is perfect even when they aren’t. But I knew that we would be helping another child that needed us. And that is a different kind of happiness all of it’s own. But still it’s hard to swallow that you will never have anymore of your own when you weren’t expecting it. It feels like something has been ripped away from you. You never quite feel whole. There is an emptiness in your heart where it should be full and nothing will ever truly fill that void.
We went forward with the foster to adoption plan. The day that we signed up I was 7 days late. But I just figured my cycle was off. It wouldn’t be totally abnormal considering the illnesses and how sick and malnourished I was. Besides we had been extrememly careful. But hubby felt that I needed to take a pregnancy test just to be sure. So I actually didn’t want to but did it to appease him. So we went to the store and I bought the cheap ones. The .88 cent ones. We came home and I went ahead and took the first one. We waited about 2 mins and I thought I saw the faintest of lines. I said something to hubby and he rolled his eyes because any woman reading this that really wanted a pregnancy test to be postive already knows how you will see “faint lines” and how you will angle it up at a light to try and see a line that is not there. Lol But he looked at it and we watched it grow darker together. And I said that really is a line. There really is a line there. It was faint still but definitely a line. I freaked out!! I cried and was happy and scared and having a a panic attack all at the same time. Hubby had to calm me down. I was happy but we had decided this wasn’t safe. So what do we do now? What is going to happen? I have a beautiful little family that needs me here alive and well. But this is something that both of us wanted so bad. Bittersweet. Just as most things are in my life.
Well you guys I couldn’t go off of that one test. So you know I had to take 3 more just to be sure! And every test was darker than the last and showed up quicker than the last. And the last one actually read pregnant. So at that point I had to start believing that I actually was pregnant. I got pregnant 2 weeks after I should have been able to. We were so careful. Looks like God had jokes and other plans for us. At that time I thought that it was just blessing us with a baby that we really wanted and had given up on safely having. But now I know it was much more than that.
As you guys know from my other blogs that I reacted to the pregnancy and lost all foods. In the beginning everything seemed hopeless and it seemed as though I wasn’t going to survive the pregnancy. But look at me now. Here is how baby Jaxson has saved me so far and he’s not even here yet!
Before I got pregnant I had 4 safe foods and no meds. I reacted to literally everything so badly that I had developed PTSD from my reactions. Getting me to try new meds or foods was impossible. I was literally scared frozen and in place. I was stuck in this world of unchecked fear and rightfully so. The only way I would take meds was if it was a die if you do and die if you don’t situation. Might as well try anything if it’s inevitable anyways right? Well when you get pregnant your appetite obviously increases. I was literally starving on ensures. Baby wanted more. The cravings would bring me to tears because all I wanted to do was eat and feed my baby properly. Unfortunately that still hasn’t been able to happen but not for lack of trying. That’s the difference. I let go of fear for my baby. I tried foods. I failed them. I reacted and would tell myself this is not worth it and i’m not going to do it again. But I did!! And at the beginning when I was in the hospital I was terrified but I let them try things to save me that I probably would have never endured or tried had it not been for being pregnant. And look at me now trying new meds!! And they are working!!! Well it may only be one med so far but I have hope again for the first time in forever. And I know without a doubt that I wouldn’t have tried any of that if it wasn’t for baby Jaxson. He gave me unbearable heartburn and acid reflux and I couldn’t drink milk so I had no choice but to try an h2 or else suffer and possibly get an ulcer in my throat. Yes it felt that bad! And that happens to be one of the first meds they put you on as front line treatment for mast cell disease. Since that went well I now am excited about starting my h1 which is an anithistamine. I am going to try clairitin. And if I get on those before my induction in couple wks that means that I have safe rescue meds and premedication meds that can help me with the labor and all the meds that I have to receive there (that is another update for a different blog). And that means that after baby is born I can try mast cell stabilizers right away that will hopefully be the game changer for me like it has been for others and I will start getting foods back! Which is huge! And that means that I can start corlanor for my POTS treatment. I have failed every treatment for that as well. And all of that collectively means hopefully a better quality of life for me, for my kids and for my family. It will never be the same as what it was. And I will always be cripples by these illnesses but it can be better. And that’s my goal is better.
Actually my goals for 2018 were get on a treatment plan that works and I don’t react to, get foods back and have a safe and healthy delivery for me and baby. It wasn’t going well or looking good thus far. But things are finally starting to look up.
So even though Jaxson is not here yet he has given me the strength, courage and want to try new things. He has helped me conquer a fear that only others with MCAS could possibly understand. And thank goodness that there is starting to be a light at the end of this very long and dark tunnel. And Izzy has kept my mind in the right place and on the goal. She has reminded me how important I am and how important I am to her and how I need to be here. How I can’t give up becuase no matter how bad the day and the life is, it would be so much worse without me in it. She needs me. Jaxson needs me. My husband needs me. You don’t have the luxury or capability of giving up when you have little ones looking up to you. They need you more than you could ever know. So if there is anyone out there struggling today and you are reading this; hold on. This too shall pass. It may not be all that you want it to be but it will get better. Live for the moments if you have to. The moments of hearing your little ones say I love you, or coming home and telling you about their day, or asking to cuddle and watch a movie, or even the really hard moments to deal with when they are having a melt down. You may want to rip your hair out but they are showing you how much they need you. Who can understand them better or give them the compassion that they need in that moment better than you. This goes to fathers and mothers out there. Our babies are our strength and that’s ok. Sometimes that is all there is to keep me going. Use it! So whatever you have to do to get up and fight again tom. It’s ok to give up for today as long as you try again tom. Do it for those babies! Gentle hugs and love to all!
Author: Erica Newbrough
#MCASWarrior #POTSWarrior #EDSWarrior