Your crazy family

Dear Logie,

First I want to tell you that I actually wrote this on Dec 19th, but I must have forgotten to publish it. I’m telling you this, because it says that your first Christmas is only 6 days away, but is labeled as Dec 20. I don’t want you to think that your mother is an idiot.

Your first Christmas is only 6 days away, and your first birthday is only 1 month away. Obviously, the holidays are a time to reflect upon the year that has passed, and I am blown away by the things that have happened in 2011.  You brought in the year on the 19th, and have kept us busy enough since then to fill up 5 years.  Ya know what? I wouldn’t change one single second. Every part of every thing that has happened has made you who you are, has made me a better person, and has shown everyone in our lives what really is important in life.

I know that you are too young to understand it now, but some day when you are older, you will see exactly how amazing your family is, and I am sure that you will be proud. The day you had surgery, everyone was there in the waiting room. Timmy, Amanda, and the girls came from NJ, Ri, Mickey, Neeser, Papa, Nini, Aunt Kim, Uncle Pete, Liam, and Aunt Amy came all that way just to sit and wait to make sure that you were ok. Timmy and Amanda didn’t even stay the night! They waited until surgery was over, and made sure that you were OK and then left. How amazing is that? Chris found a rental house nearby, that Neeser, Mickey, Ri and Nini stayed in for just about 2 weeks. Neeser was amazing! She asked the doctors all of the questions that I was afraid to ask, and translated things that were above my head. Ri made sure that I had plenty of sour patch kids, and salt and vinegar chips, Nini was there to do what she does best (worry), and Mickey was there to do what she does best, which is sit and knit, or do some sort of crossword puzzle. I can’t explain it to you, but the fact that she can sit there so calmly and carry on a normal conversation while all of the craziness was going on was comforting. You just look at her, and she looks so relaxed, you would have thought that you were having a tooth filled. If she was the least bit nervous, I never knew it,m and that kept me as calm as I could possibly be. Obviously daddy and Connor were there as well. Daddy, was a rock star. He held it together the entire time you were in surgery, and never let me know that he was worried. Then when the nurse came out and talked to us and told us that everything went great and that you were being moved back up to the ICU, he cried like a baby. It was the first time I had ever seen daddy cry other than when you and Connor were born. Connor was only 2, so at the time he really didn’t understand what was going on. He knew that you were sick, and that your heart was broken. We left it at that, because we didn’t want to scare him.

If you start at the very begining

ImageDear Logie,

I hope you don’t mind that I call you that, you kind of adopted the name early while I was still pregnant, and the name letterstoLogan was already taken.

I can’t imagine that I’ll ever forget, but just in case I would like to make sure that I have all of the details put down somewhere where I’ll always be able to bring them back up if I ever do.

First of all, the most important thing that I want you to always know, is how incredibly grateful I am for you. I know that you are going to have some pretty rough times ahead of you, but you must know that as difficult as they may be for you, I can assure you that as your mom, it is a million times more difficult for me to watch you go through them. I also want you to know that I will always be there for you.

Your father and I always knew that when we had children there was a 50/50 chance that our children would have marfan, but thankfully we never knew that they could be more severely affected than dad was. I say thankfully, because if I would have known that I would have to put you through all that you have been through I may have made the decision to not have children, and I cannot even begin to imagine, even for one second what my life would be like without you. You have always been a breath of fresh air. Even at your worst, you were inspirational and amazing.  Actually, you were so amazing that a lot of the time you made it easy to forget exactly how sick you were.

I have to be honest with you, when you were born, your father and I thought that you had died. The delivery room and all of the doctors and nurses were silent (as were you). You were a c-section, and I was numb from the waist down, so I wasn’t able to see you. After a few seconds, which felt like forever, I heard one of the nurses ask the doctor if they should save your cord blood, and he said  that it was too late. The doctor also told someone in the room to call the neonatologist. I can’t tell you how relieved we were when he told us that you had marfan syndrome. We were so happy that you were alive!!

Dr. Spooner your first cardiologist came to see you the day after you were born, and told us that he could tell just by looking at your long fingers, arms, and legs that you did in fact have marfan. He also told us that he could hear that  your valves were leaky, and that we would have regular visits with him.

The visits started pretty early, you were around 1 month old and we saw him once a month for echos, and at 3 months he put you on losartan and told us that you would absolutely need to have surgery to repair your mitral valve at some point during your childhood, but he hoped that we could put it off until you were at least 5 and that if the losartan worked really well, we might make it until you were 10. I was so naive, that I actually thought that it was going to be your miracle and actually reverse  your leaky valves. We would later find out exactly how wrong I was and how very, very wrong Dr. Spooner was.

So True..

You passed me in the shopping mall…(You read my faded tee)You tapped me on the shoulder…Then asked…`”What’s a CHD?” I could quote terminology…There’​s stats that I could give… But I would rather share with you…A mother’s perspective. What is it like to have a child with a CHD? It’s lasix,aspirin,losartan, aldactone, captop​ril…. It’s wondering…Lord what’s your will?… ……It’s monitors and oxygen tanks… It’s a constant reminder…to always give thanks… It’s feeding time, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need…to help him grow strong… It’s making a hospital…home for a while… It’s seeing my reward…in every smile. It’s checking his stats…as the monitors are beeping… It’s knowing that there… is just no time for sleeping… It’s caths, xrays and boo boos to kiss… It’s normalcy…I sometimes miss… It’s asking…do his lips look blue? It’s cringing inside… at what he’s been through. It’s dozens of calls to his pediatrician… (He knows me by name…I’m a mom on a mission). It’s winters homebound…and hand sanitizer… It’s knowing this journey…has made me much wiser. It’s watching him sleeping…his breathing is steady… It’s surgery day…and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart… must be repaired… It’s waiting for news…on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends… with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar… down my child’s small chest… It’s touching it gently…and knowing we’re blessed… It’s watching him chasing…a small butterfly… It’s the moment I realized…I’ve stopped asking…why? It’s the snowflakes that fall…on a cold winter’s day… They remind me of those…who aren’t with us today