what a difference 361 days make

as my son’s first birthday is fast approaching, i realized i never posted the “greyson’s birth” album.  i recently came across the album on our home computer when it hit me, i’d never shown the world the first day of my precious lovey’s life.  i’ve posted everything before and after that he has been associated with, but not the actual birth.  i feel such guilt about that.  did i not post them because i was still sorting through my feelings MONTHS after he was born?  did i not post them because the sadness in my eyes is obvious in some of them?  did i not post them because the day that started out so promising and happy ended in tears, despair, and heartbreak…..and the proof is in the pics?   here we are 361 days later and rest assured, the album will be posted ASAP :).  i want the world, well those that read this, to know that greyson is one of the very best things that has ever happened to me.  i want others to know that yes, while the sadness probably outweighed the joy on my son’s first day on earth, that the exact opposite holds true today, almost one year later.  i want others to know that we have come a long way emotionally since july 21st, 2013 and that wow, what a difference 361 days make 🙂  

The word of the day: LUCKY

My Greyson James is almost nine months old!  I feel like I’ve gone through every emotion possible during that time, and I probably have.  Do you know what emotion I feel right now?  Happiness!   I can’t expIain it, or maybe I can.  Yesterday for example, I was so tired, having been up since 4 a.m. yet my tiredness was SOMEWHAT overshadowed by my sweet baby G.  As soon as his daddy brought him in the door from his doctor’s appointment, he had me laughing HARD.   He was making these faces that I’ve never seen before.  Then I would say something sweet to him and he would blow raspberries at me, as though saying “whatever lady.”  His moments were spot on! 🙂   I have such an overwhelming love for that boy!  This may or may not make sense or you may or may not agree with my wording/feelings, but I feel like I love him more because of his Ds, not in spite of it.   I was telling my mom these things just today at lunch and she said she sees it, the joy and happiness I apparently exude whenever I am near my boy.  🙂  I liked knowing that others see how much my son means to me, how much positivity he has brought into my life.

I feel like we have been pretty lucky during our Ds journey.  Yes, lucky!  Greyson has been very fortunate to not have certain ailments/issues/diagnoses that are associated with Ds.  I don’t make light of his heart surgery, but to me, that’s a thing of the past.  We have moved on from that, it won’t follow us/him through life.  Yes, we will have yearly check ups, but that’s just a precaution, just a check that the ole ticker is working as it should.  Every time we’ve seen a specialist, I would get nervous leading up to the appointment.  LUCKILY, it’s all been for naught.  He comes away with a clean bill of health.  I joined several Ds FB groups and I see what other parents/children are enduring….and I feel LUCKY.  Ds children are usually born prematurely, which means they spend time in the NICU.  Greyson came a little early, but that’s due to me having low amnio fluid.  We will chalk that up to my hate hate relationship of water.  He also didn’t spend ANY time in NICU after birth.  Ds children usually have issues with eating, which require feeding tubes and such.  Greyson did not.  Sure, we had a latch issue those first two days, but no other feeding method was ever required and once we/he figured it out, he ate like a champ.  Have you see that kid’s arms and thighs?!  It’s safe to say, feeding has NEVER been an issue. 🙂   Sure, we aren’t out of the woods yet, there are many more things we have yet to experience/could go through, but that is the case for any parent, any child.  I just honestly feel that good things are in store for G.  Now before I come across as though everything is and will always be sunshine and rainbows, I know there are trying days to come.  Will there be future posts when I’m not feeling so LUCKY like if and when G isn’t crawling or walking as a typical child his age is, will I be upset/down?  Of course.  Today, however, today I am just focusing on the here and now, the good news that seems to keep coming our/his way.  Today I feel LUCKY!!! 🙂     

the only female in a house full of BOYS

on friday evening it was revealed that I am pregnant with my third and FINAL son.   although it wasn’t a shocking revelation (I had suspected, was 80% confident it was a boy), it was still painful to hear.  there are those who say they don’t care what they are having, as long as he/she is healthy.  well of course I want my children, all of them, to be healthy…..but I also wanted a girl.  I’ve known her name since I was pregnant with greyson, before we found out he was a boy.  her name, my imaginary daughter, was going to be emersyn olivia, eme (pronounced emmy) for short.  she was going to wear tutu dresses and hair bows, her hair almost always in pigtails.  her room was going to be pink and gray with as many frilly details as I could find.  she was going to be in ballet and gymnastics.  she was going to love shopping and getting  manicures with her mommy.   while the boys were out throwing the ball, the girls were going to go do girly things.  because she was raised with a brother with down syndrome, she was going to know compassion, empathy, and tolerance from the very beginning of her life.  fast forward to her as an adult:  she was going to make sure her brother was cared for and had a home when their elderly parents were no longer able to take care of him. yes, of course the newest son can and will probably ensure the same.   it’s just that I had a dream, a vision of what I wanted and well it’s never going to come true.  please do not misunderstand me, I already love and, of course, want baby boy h.   right now, though, I just feel something is missing, feel an emptiness that only hair bows and tutu dresses could fill :).  of course this feeling will pass when i hold baby boy h and when I see my two boys playing together, bonding as only same sex siblings can do.  just let me have a few days….well maybe a few weeks to accept I will be the only female in a house full of BOYS 🙂          

In case you wondered…..

yesterday we shared the exciting news that greyson will be a big brother in just six months, making them just 13 months apart.  in case you wondered, yes, this was a planned pregnancy.  as a matter of fact, i was trying for irish twins!  when I was pregnant with greyson, before we knew about his DS diagnosis, we discussed having a second child and soon after due to my age.  once greyson was born and we learned that he had DS the discussion of having another child took place again.  we discussed the pros and cons.  obviously the pros won out because we decided to try again.  I, however, gave the hubby only three months to work his magic, ensuring a summer baby.   I LOVE, ok, am slightly obsessed with summer babies.   all three of my kiddos (OMG, 3 kiddos?!) will have summer birthdays. 🙂   we conceived on our third month of trying.  in case you wondered, yes I have fears that this child with have DS as well.  chances increase by 1% of having another child with DS.  the doctors wanted me to pursue genetic counseling, which I declined.  they really push for amniocentesis, which can cause miscarriage.   as would have been the case with greyson had we known he had DS ahead of time, knowing isn’t going to change our decision.  sidenote:  since the birth of greyson, science/medicine has come a long way.  if you do the math, that’s just seven months!   there is a new, non invasive blood test that detects trisomy 13, 18, and 21 with a 99% accuracy.  no more amniocentesis required!   I took this blood test last wednesday and we will have the results around monday of next week.  we will also know the gender!  in case you wondered why I took the DNA test if it isn’t going to change the outcome, our decision to continue with the pregnancy, simply because greyson’s BIRTH day, a day that was supposed to be the happiest of days, was actually one of the saddest.  I feel guilty about that!  in case you wondered, yes, I worry that having a second child/baby will take away from greyson and the love, help, and attention that he needs.  having said that though, I think having a sibling close in age will be good for him as well.  he will have someone to emulate, learn from….and play with as only siblings can.  in case you wondered, yes, I am crazy for having two young’uns at the ripe OLD age of 41 🙂 

greyson got lucky in the dad department

before I met my hubby, I read A LOT of romance novels, I mean A LOT!  my weekends were spent laying in bed reading about happily ever afters.  it made for fast weekends getting lost in a book, or two, or three.  I met my hubby on an online dating website.  I went into it with no expectations, not expecting anything to come of it.  now, less than three years later, I found MY happily ever after.  it just took 38 years to do so.  sure, it’s not exactly what romance novels are made of.  he didn’t whisk me away to a foreign land, he didn’t show me his room with freaky deeky toys, LOL, and he didn’t rescue me from impending danger.  what he did do and still does is show how his family is his number one priority.  it used to be me, numero uno, that was his top priority, but now I share the spot with our precious lovey greyson james.  he’s a cute kid, so I don’t mind sharing the rank.  I’ve always thought my hubby was a pretty amazing guy, but watching him in dad mode, wow!  I have NEVER met a more hands on, always involved dad.  he shares in all the responsibilities, I may even venture to say it’s 60/40!  the hubby is quick to step in and fix dinner (he does this wayyyy more than I do. my contribution is drive thru food), hold greyson just because, read to greyson, sing silly, made up songs to greyson, change a diaper, many a diapers in fact (even at the expense of his gag reflex), in general, just be there. I don’t know what the future holds for greyson, but what I know with a certainty is that greyson will know BOTH of his parents love him and that HIS needs always always come first (well unless there’s a bowl of chips and salsa present :)). the hubby has accepted greyson’s diagnosis. to him, it just is and no point in dwelling on it. because of him, he has made the diagnosis more bearable for me. some of you may not know this, but when I was pregnant with nathan, my almost 21 year old, there was concern he too had DS. I’m trying to image how things would have been at 19 years old with a child with DS while married to the man i was married to. I’m not going to talk bad about my ex, I’m just going to say 20 years later, I’m in a better place with a better man (ok, i’ll talk a little bad about him, LOL). while this “journey” we are on together wasn’t exactly wanted, I’m glad I’m sharing the adventure with my DMH. greyson james, you really did get lucky in the dad department!

being honest with myself……and you

I am struggling with my son’s diagnosis, which in turn is making me question my belief in god.  it started on christmas eve when the hubby and I took greyson to get his picture taken with santa.  when I saw the choices of pictures to choose from, I felt like crying, actually there were tears in my eyes.  greyson looked like he had DS in all of them.  you are probably saying well duh, he has DS.  while i know he has DS, I just didn’t want to see it staring back at me in a picture that was supposed to bring me joy…..but wasn’t. it was just hard to look at because he has been in so many other pictures where his DS didn’t seem so obvious.  let me be clear, I am not ashamed of my son nor will I ever be!  I just feel a sadness that I can’t seem to get past when I think about his crappy lot in life and it is just compounded when I see it staring back at me in a picture.  fast forward to new year’s eve.  the hubby and I were on our way home from dinner when we started discussing greyson’s diagnosis.  the hubby said that I haven’t accepted his diagnosis and that I need to.  he didn’t say it meanly mind you, he was just trying to tell me that it isn’t going to change so I might as well accept what I cannot change.  he suggested I seek counseling, which I plan to….and soon!  during this same conversation I said I wasn’t sure if I wanted to get greyson christened this summer as we had previously discussed.  I just feel a bitterness at a god that would do this to my innocent, sweet baby boy.  I have heard a lot of “god only gives you what you can handle”  and “god chose us to be his parents.”  why did he chose us?  what lessons are we going to learn from this?   what are we supposed to teach others?  what is god’s plan?  because to be honest, while I appreciate him thinking we are up for the task, I really wish he hadn’t chosen us/greyson!  to end on a happier note, while i still feel a sadness and bitterness that I’m unsure if i will ever get past, i vow to be the strongest advocate and supporter of my baby boy.  he will be encouraged to do/be whatever he wants to do/be.  he will see only love, encouragement, pride, and smiles from his mother, who loves him with all that she is!       

Time of Reflection

It is literally the last day of 2013.  While I look forward to what 2014 has in store for myself and my family, I will miss 2013. Sure, the year had it’s moments of despair and heartache, but it was mostly a year filled with joy.  It started with a pregnancy at the ripe old age of 39.  It was a pretty uneventful pregnancy, ALMOST easy for someone of my advanced age :).  Then there was the move back to Virginia Beach from Suffolk in April.  Sure, we moved into a much smaller house, but it brought me back to my family and friends.  It’s a tight fit at the homestead with 3 humans and 3 dogs, but I wouldn’t change a thing.  Ok, well that’s a lie, I would change the square footage.  Next, there was the birth of my lovey July 21st, just 2 days before my 40th birthday.  Of course there were A LOT of tears that day….and many days that followed.   As soon as they placed him on my chest I knew he had Down Syndrome.  I still struggle with his diagnosis and what I deem to be the unfairness of HIS situation.  I still ponder the “why him?”.  Would I change it about him if I could?  I’d be lying if I said no.  Having said that though, I love that boy with all of my being.  He is going to teach me so much, he is going to show me the good in the world, to be more patient, to not sweat the small stuff (let’s be honest, those last 2 are going to take a while.  I’d like to say those will be my 2014 resolutions, but it’s going to take more than a year to reach that point :)), and what it means to love unconditionally.  I bet that boy won’t have a mean bone in his body!  Next came Greyson’s open heart surgery November 15th.  We were optimistic that he wouldn’t require the surgery, but his heart didn’t share in our optimism.   Seeing my infant unconscious and connected to many wires and tubes was heartbreaking, but I knew it was all for the greater good.  He showed us how strong and resilient he was right away.  He spent just 4 days in the hospital post surgery.  That kid showed NO signs of pain.  I dubbed him Superman.  I’m still looking for his cape.  He already has the “S” on his chest, it just looks strangely like a scar.  🙂  Do I get sad when I see that approximate 4 inch scar on his chest?  Sure, but I just tell myself that the reason behind that scar is what is going to give him the energy, stamina, and ability to go far in life, to be everything he was meant to be.  Ahhh 2013, you were filled with mostly highs, just a few lows.  All in all, you were a pretty great year.   2014, I expect nothing less from you!   

it doesn’t define him

tears, tears, and more tears right now.  i just had a light bulb moment, thanks to a facebook friend I just met YESTERDAY.  she and her husband are looking to adopt a second child.  she, like me, is a mother to a child who has down syndrome (DS).  she posted a letter she submitted to an adoption agency in the hopes of being selected as the adoptive parents.  in  the letter she describes her family, including her daughter.  as I read through the letter, I kept waiting for her to mention her daughter having DS.  she never did!  it was such a revelation to me, that she didn’t even feel this diagnosis was worth mentioning, like it didn’t matter, that it doesn’t define her child.  over the last three months, I have been consumed with greyson’s diagnosis, I have let it define him on every level.  I would tell complete strangers that he had DS, like I had to explain his features, like i had to tell them before they had a chance to ask, like it was their business…..again, defining him by his DS.   ugh, I just want to kick my own a**.   it will take time, it won’t happen overnight, but I vow to treat greyson’s DS like it doesn’t matter, that DS is just a small part of him, that it, well doesn’t define him. 

Learning To Love Your Child With Down Syndrome?!

So I came across a memoir a mother wrote about how she LEARNED to love her child who has DS.  She had to learn to love her child who was born with DS?!  While I guess this is supposed to be inspirational to other parents with special needs children, all it did was piss me off!  Her child, like mine, didn’t do anything to deserve this life sentence.  Sure, as a parent of a special needs child I, along with my son, am going to face many challenges.  It will most definitely be an uphill climb.  Lovey, however, is the one who will face the majority of these challenges, and all because this was the life he was given, not the one he asked for.  I will just be along for the ride, encouraging him, being his biggest supporter and cheerleader.   Although his diagnosis at birth was a shock, my love for him never waivered, never once did I have to LEARN to love my son.  I loved him while he was in the womb and my love has only gotten stronger now that he is here in the flesh, extra chromosome and all!  

The What Ifs

I’m the mother of a child with Down Syndrome, DS to save time.  My lovey, as I refer to him often, just turned 3 months old.  We didn’t know he had DS until seconds after he was born.  I say seconds because as soon as they placed lovey on my chest, I knew!  More on that another time.  They say a baby changes everything.  Well for me, having one with special needs changed my  perspective on life.  I had a selfish tendency, mostly thought of my wants and needs first.  Hey, I plan to be totally honest and want to come from a place of only truth on here.   My decisions were based on how it affected me.  Yeah I know, I sound like a real prize, don’t I? 🙂    Now, however, 40 long years later, lovey comes first.  He may only be 3 months old, but I’ve already started wondering/worrying about his future:  will he go to private school or public school?  Will he be in class with typical kids (I don’t use the word normal, hate that word!) or will he be with other special needs children?  Will I have to kick some arss because he is getting picked on/bullied?  Who will take care of him when his father and I are no longer around?   What can I do to help him thrive?   Right now because he is like any other baby I want to treat him as such, but it’s hard not to worry.   It’s actually a time consuming thing, to worry about him, to think about the “what ifs”.  Wow, a change has occurred.  Lovey takes precedence, HIS well being comes first…..who’d a thunk it?  🙂