Saturday, February 21, 2015

Joining a sorority

This past week I made the journey back to St Francis, Peoria for a two week check in. It's safe to say they were more concerned with my mental health than physical. You don't truly realize what you're going through when you're going through it...if that makes any sense. You go through the motions, but the reality of the situation has yet to fully sink in. My mind kind of went numb after we delivered our son. I was officially initiated into a sorority that I never wanted to join. The sorority of parents who have lost their children. "Delta Gamma holy shit this stuff doesn't happen to people like me" I can't describe the feeling of this new world any better. 

Checking out of the hospital was one of the most bittersweet moments. When I was first admitted and told by my wonderful doctor, Dr Leonardi, (who I love and will praise later) that I would be spending the rest of my pregnancy (90 some days) in the hospital, I was beyond overwhelmed. At first, the worry of my child at home was really my main concern. Not realizing the severity of the situation yet, I worried mostly about missing out on time with my son. I couldn't physically handle the amount of stress this caused me at first. I would cry at commercials that reminded me of Jude's favorite foods or movies we had made plans to go see. I would wake up and sob, go to bed and sob...all I wanted was his little body cuddled next to me, to smell his hair, hear him whine (you learn a whole new appreciation for what typically was an annoyance). In my mind, at that point, he was what I missed and who I cried for. On the day we checked out, though, I stood looking out the window of our now "postpartum" hospital room and sobbed for the children I'd never get to miss in the way I missed my Jude. My husband had went downstairs to the chapel to light a new candle for our son just as he did previously for our daughter as the nurse came in to let me know the paperwork was complete and we were free to go home. I never thought I'd want to stay longer...weeks ago you could have never convinced me that I'd feel that way.

The wheelchair ride to the parking garage entrance was such a painful experience. It was the first time I had been around anyone in the outside world for weeks and I felt like everyone knew I had joined this new sorority. I couldn't find the strength to look anyone in the eyes. I had no shoes, my clothes had basically been stripped prior to my life flight to OSF and we weren't expecting to be going home until May. I donned bright pink, polka dot slippers my husband had bought from the gift shop and I felt like everyone stared as I sat down in the waiting area of the garage waiting for our car to pull up. Oh yes, waiting for our car, the SUV we had just went out and bought a month or so prior that we made sure had plenty of room for three car seats was now another sad reminder of what we were leaving without. I have never felt so much like I could have screamed and kicked and been white jacket admitted then right at that moment. Instead I watched the car pull up, got up in silence and walked out into the snow slush in my fancy new slippers. 

Life began as a new sorority member. 

So back to my check up...I sat in a conference room and met with my wonderful doctor. I'll take a minute here to praise my specialist, Dr Leonardi. Words cannot describe how much I love this man. My husband and I would have found zero comfort in the despair of our situation without him. Seriously words can't even express the emotion I have toward him, I'm trying and can't find the words. We would probably honestly not be able to confidently attempt a pregnancy again if we didn't have such faith in him. Knowing our future pregnancies will be handled by him is this huge reassurance, he is just amazing. A self proclaimed eternal optimist, he always shed some light on even the most frighteningly realistic, heartbreaking moments. Once we started to realize the severity of our situation, it was really hard to not melt into the despair of it all. I honestly think solely because of Dr Leonardi and the amazing nurses/aides in OSF antepartum unit, we did not go crazy, to put it mildly. 

Anyways...again, back to the check up. I'm sidetracking so badly. We discussed the events that we had unmistakably now lived through. Yep, I'm still here, pulse is still beating. I was commended for my strength and blankly responded to that as I usually do. See, it's odd when you join this sorority as a mother who still has living children. I'm seriously not strong but I am a mom. So when I wanted to go home and curl into a ball and cry and sleep for days and drown myself in wine and self pity...I instead went home and maintained my normal duties as a mom to a five year old who knew nothing but his mom was finally home (score!!) and he had two more guardian angels. I was determined to pretend to be strong for that five year old. I didn't want him to take on the burden of a mom who was "changed"...although, undoubtedly, I am. It's the burden of this sorority, I am changed, but others don't see the interior, only exterior and I was born with a tough exterior...which makes it really hard. 

This check up appointment was truly important in discussing where we go from here. We lost our twins due to cervical incompetence and obviously extreme prematurity. Dr L explained that the saddest part of cervical incompetence is that most of the time, there is no warning, no way of truly knowing until the mother experiences the loss. Most incompetent cervix cases dilate with no pain, contractions, they are essentially "silent". Cervical checks were to be started on me at week 20. I was flown to Peoria at 19 weeks and 4 days and at that point my daughter's water bag was already protruding. It was essentially too late to do anything at this point but pray for a miracle. Most incompetent cervix losses are late...between the weeks of 16-24 when the weight of the baby or in my case babies (which obviously adds more weight as a multiple pregnancy) becomes too much for the cervix to hold. This point in pregnancy is late and yet too early for a baby to survive as the lungs have not began functioning. Risks of a baby being born even at the point of "viability" which is at the minimum 24 weeks include severe handicaps. We knew there was possibility that our children could make it to the point of survival but the reality of our situation with loss of amniotic fluid, extreme prematurity, etc was possibly having children that faced serious health risks and would possibly never know the quality of life we knew. We were even asked upon being admitted if we wanted to "discontinue" the pregnancy with Liam if labor started with Lucy knowing she wouldn't make it to save us the heartache of these risks with him. This was not an option for us. I put it in God's hands. I knew that God had a plan for our babies and us and don't believe it is our place to ever manipulate that plan. I now know, God wanted zero suffering for our babies and sadly I prayed, hoped and wished for a miracle and still joined this ugly sorority. We now know, in future pregnancies, a cerclage (which essentially is sowing the cervix shut) will be a necessity along with prolonged progesterone shots (which for all my IVF friends know this practice well)...but a "successful" pregnancy is definitely in our future. It's truly heartbreaking that it took us joining this "sorority" to find out that my cervix checked out on me after carrying that crazy, beautiful five year old I was mentioning. I hurt and cry daily for the children I will never know but in the same breath, thank God, because I am lucky to have a healthy child that drives me crazy. The Lord gives and he takes and its not my place to question that. I try really, really hard to trust in his plans. Obviously sometimes being human and so naturally selfish, I can't help that occasionally I may break down on the bathroom floor begging for my children back. That's reality. Still, I trust his plan.

So my check up was concluded with fair warning that this sorority I've now joined is a roller coaster ride that will stay with me for life. We were given the blessing to proceed with IVF again within this year physically (which is a subject for another post) but warned that it was the mental aspect that a lot of my care right now focused on. I was warned that with being on leave right now that rest was equally important for my mind as it was for my body. I was warned to make sure that I'm prepared that I may feel okay and then find myself having a breakdown when I see a set of twins when I'm out shopping at Target and I realize that Lucy and Liam would have been their age. I'm warned to acknowledge that the breakdowns are okay and even necessary in healing. I'm warned of so many aspects of this loss that I hadn't yet considered and sit doe eyed as they're discussed. 

This sorority sucks. I want to quit. But I've been pledged for life...so it's important to focus on what it has given me aside from a big hole in my heart. It has taught me the value of life. Life is so fragile and truly a miracle. After going through IVF and literally watching the miracle of life happen from embryo to end result, I've never realized how truly huge the blessing of just having a healthy child is. I had a friend call me this past week and break into tears as she confessed that it hurt her so immensely that I've been dealt the struggles I have. She explained that she knew how much I appreciated my son and how badly I wanted a baby and how it made her go home at night with a new appreciation for her children. Pregnancy came so easily for her and it broke her heart that I've gone through what I have. The call was really an unexpected one in that when people expose their weaknesses and praise you, it's almost uncomfortable. Again, I'm honestly just dealing with what has been placed in my hands. I will say, that if my losses can shed light on how blessed a parent is to have a healthy child to kiss goodnight then I can bear that cross. 

I can't change that I belong to this sorority. I can't wish it away and sometimes I don't want to. Obviously, I wish I was being induced into the club of  moms that are mildly crazy and definitely on the verge of being overwhelmed into a breakdown because they're juggling that five year old and new life. I welcomed that stress. But I'm still a mom to four children, even though I only get to kiss one goodnight. Sometimes being part of this sorority helps me know that other moms and dads go to bed and only kiss some of their children goodnight and follow up with a nightly prayer asking that God is taking good care of the rest. The sorority means I'm in a group that doesn't disregard my children because they're not living. I want to remember them everyday. Every detail of their tiny faces, I never want to forget kissing their head, I want to remember it all, they're my children. It helps to know I'm not alone in those feelings and belong to a sisterhood that understands. I am not alone. Ever.

And actually since I also have that off the wall five year old, I'm not alone right now and I'm being nagged for my tablet so he can watch Netflix as we speak so I'll wrap this up. Like I said, I am not alone. Ever. 

The crazy child I thank the big guy for.



Friday, February 13, 2015

what loss taught me about love & marriage

My first blog post! I racked my brain with what topic to write on...with the loss of our twins being so incredibly fresh and my brain being overwhelmed with so many thoughts...I figured in spite of it all, I would start with a post about love and marriage, being it's Valentine's day tomorrow and because all of these significantly devastating events have taught me a thing or two about love and the strength of our marriage.

I look back on dating my husband and even into the early parts of our engagement/marriage and realize how I truly did not understand love. Sounds strange, right? Because I vowed to spend the rest of my life with this person...what do you mean you didn't understand love?! Red flag. No, no...I loved him but I don't think I understood the magnitude of what love and a marriage meant. Marriage was exciting: pretty dress, big party...I'm a Mrs, how grown up! But...it seems that with the excitement of those moments we lose the true meaning of the commitment you're making and what real love is.

True love isn't the movie we watch that makes us wonder where we went wrong or the fairytale we grew up reading...and we know that. We know there's a line between reality and that built up version of what love is.

When we were early into our relationship and even up into marriage, I was jealous and insecure. I couldn't understand that this man had married me. I think immaturity has a lot to do with that, piled along with the emotions that infertility blindsided me with. Infertility has this nasty way of making a woman feel inadequate. How could this man want someone who can't even give him this family we're exhausting ourselves for? Making babies should be easy, it should be fun. These thoughts destroyed my self confidence. It took a long time to realize that my husband married me AFTER we lost our first baby, AFTER we sobbed in a cold hospital room where we were told it was going to be a struggle for a family, AFTER all of that...full knowing the challenges, he chose to buy a ring and propose a lifetime because despite the challenges...he wanted to work hard to make it happen with ME. Hindsight is 20/20...insecurities now seem so unnecessary.

Marriage changes things...and when people say that so many times it's focused on how it negatively changes things. I call bull on that. (Pardon my French.) Marriage is amazing and it has taught me what love really is.

Love is finding a way to navigate through the problems you have and finding a way to get past them. Love isn't clean and free of conflict. Conflict teaches us what we stand for. Early on, we fought often...about stupid things mostly. I look back at that and truly we misunderstood each other and hadn't figured out how to communicate on our own terms. If we hadn't had that blow out about how something as insignificant as why deleting his Game of Thrones on the DVR sent him over the edge...I don't think we'd realize that those insignificant things mean something to your spouse. In dating, you may say screw it. In marriage, you make note. What matters to them needs to matter to you. That's love. You start to protect them in a way you would your child, you want them to be happy. One of the hardest parts of my pain in losing our twins was seeing the heartache on my husband's face. I could have taken all that pain on myself to protect him from feeling that...because his feelings matter to me. That's love.

Love is having a family member. This person isn't a boyfriend/girlfriend, friend, lover...they are your family. This is important and not realized (at least it wasn't for me) until you go through something life changing like holding a child you created together as they take their last breath. You see, we feel the pain as a family. We cry together, as a family. I know that the emptiness I go to bed with sometimes, he goes to bed with, too. You feel strength because of that. It's strange because I had never felt so close to my husband until we went through this ultimate test of heartache. I never felt like such a team and that may sound ironic but when the dust settles and the outside world stops grieving with you...this man is my family, my partner...and we hurt together, we'll heal together and move on from this...together.

Love is not about vanity and superficial things and it goes past getting ready for date night...that marriage vow we took..."in sickness and in health"...I would tease him and hold that over his head while I was hospitalized and on complete bed rest while going through the loss of our twins. Love for me was my husband helping me go to the bathroom on a bed pan while all my humility went out the window, love was my husband making sure I was ordering three meals a day because he worried, love was him making the trips to Wal-Mart to buy necessities like feminine wipes and Twizzlers, love was him buying glue dots because it was so important to him that every card I received was hung up so I knew how many people cared about me, love was my husband juggling work schedules so he could sleep beside me in a prison style cot so I wasn't in pain alone, love was sitting with me while I was barely able to answer a question in a conscious state because of the meds they had me on, love was celebrating every time we had a positive milestone and then holding me while I sobbed and begged God to not put us through this. Love was and is just being there because that person means the world to you and you can't bare to see them go through any pain alone.

We left the hospital with boxes full of mementos and support information for grieving parents instead of babies. We drove the hour home in mostly silence. We cried together and held hands as if to comfort a pain that is impossible to comfort...but we felt the pain together. We knew that everything we had gone through and the ladder we'd have to now climb again would be climbed as a team effort as it has from the beginning of our journey. I feel sad and even angry at times...but because of the strength of marriage, I don't feel alone. I feel as though I am part of the strongest team I could possibly pull rank on and after we brush the dust off, we'll face the world of grief and healing and navigate through IVF again, together.




 
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