My world was broken. My heart was sore. My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.
Over time I came to accept that, and embrace the family of three that we had become. But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”
Fast forward to the present. We have a thriving almost seven month old little lady. She makes her presence known and her development is one of the most amazing things I have ever witnessed. Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody. I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes. I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone. I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.
I felt my eyes sting with tears the other night. I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him. That he would be her hero and they would be good for each other.
Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes. I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.
Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.
39 weeks tomorrow. I woke up today with a weird sort of peace and calm. And that has been hard to find in the last month or so. With the heat of the summer, daily bouts of contractions, Evan’s CHOP overnight stay, some potty training regression, anxieties about the baby/transitional period to come- it has just been a different last 5 weeks than it was before Evan was born. I think back to that last month before his birth (where I took entirely too long of a maternity leave before he was born) I took long walks each day, bounced on my yoga ball, wrote my unborn baby letters, I read baby blogs at length, and just was so wide eyed and excited in general. I didn’t have a lot of false labor, and the weather was kind to me. I just re-read this blog I wrote the night before Evan was born, 5-26-2011, and I smiled at my naivete.
I also re-read this entry that I wrote to all the different mamas that I have been in the last 4 years. Dear Mama
Phew. No wonder I am feeling so differently this time. It has been a wild ride the last five years since we lost my Dad and found out we were pregnant with a future Evan.
This guy made me a mama….
One thing that I do not handle well is uncertainty. It’s not in my DNA to find peace in the unknown, or to accept that I do not have control over everything. But….I have been working REALLY hard at it for a long time. Just because it is hard for me, doesn’t mean I can’t try. So this morning, I wake up, feeling a little more at peace, and very very VERY ready to meet this little girl. I also am striving to find acceptance of the unknown. Not knowing who she will be. Not knowing if she will also have special needs or developmental delays, or the like. Not knowing if the labor will last 2 days, 2 hours, or 30 min. Will she love her brother with all her heart? Will Evan be able to break away from his toys and music to love her right back? Can I sit in the quiet moments with this little girl and breathe deep knowing that no matter what happens…..It WILL be okay.
Because when I read back to Evan’s diagnosis story. I remember those fears, those questions, those unknowns that were suffocating, blanketing, all encompassing. And I sit here, over three years later, with another child in my belly- and it HAS been okay. Evan is potty trained (going through a little regression but we’re on it), he’s going to school full time, he is loved by classmates and teachers alike, he runs up to me when he sees me after a day of school saying mommy, mommy! He is starting to read sight words, climbing into his car seat himself, finally spitting after he brushes his teeth! And we are about to have another child after sending two babies to Heaven.
I still don’t know what will come in the next day, week, year, decade. And that is not easy for me. I’d love it if God would just send me a little date planner and let me know when each milestone will happen, when she’ll sleep through the night, when Todd and I can go out on a date again (where I don’t feel like I am going to fall asleep after two min), when Evan will be invited on his first official school playdate…….
But that’s not how it works.
Instead we all plow through our days and lives doing the best we can as things happen. The amazing, the excruciating, the beautiful, and the mundane.
I AM getting better at all of those. And I won’t quit until I’m no longer on this planet. Because this is all worth it.
Can’t wait to add a new one with Baby Sister. Stay tuned!
I think if I was a little more tech savvy, I could search my past blog posts and find the ones where I have quoted one of my closest friends, Talia, when she says, “You need to slow your roll!” I can remember her using that phrase back when we started teaching together 10+ years ago.
She is very right.
I do need to slow my roll.
This guy deserves that. He deserves much more of course but at the very least he deserves a mama who can practice what she preaches. I often use the phrase, “Presume Competence.” and I relate it to Evan and his ability to rise to the occasion when you give him the chance.
So why is it so hard for me to remember that myself?
In the past few months, he has started drinking out of an open cup.
He has moved into his big boy room.
Evan bouncing on his bed with his Uncle Joe
And he is potty trained.
Yes, I sure did say that.
Potty trained. (and I’m choosing not put underwear pictures, because I already take a huge risk putting his pictures out there, but I don’t want to go that far…)
My proud big boy
Ok…so he is not fully potty trained. We are not night training right now and probably won’t for a little while. But he is WAY further along in the process than I ever would have imagined. We implemented the popular three day potty training method (a loose version) a little over a week ago. It was hard. HARD. Three of the hardest days I have had in a long time. But…..fast forward a week. He has had only a handful of accidents. None at school, and he has gone several days in a row without any. After being in diapers only for for four years. The biggest accomplishment was staying dry through a very stressful CHOP (Children’s Hospital of PA) visit this past week. I totally planned to put a pull-up on him before he went through some testing and a very nerve wracking doctor’s visit, but he initiated potty trips while we were there, so I decided to PRESUME COMPETENCE gosh darn it and let him wear his big boy underwear and surprise me.
And of course he did.
This time last week I was sitting at home writing an email to Evan’s ESY teachers preparing them for the possibility of accidents, and letting them know how the weekend had went. I sent in multiple pairs of underwear, extra clothes, the works. Fully expecting that he would come home in a different outfit. I was a little bit of a nervous wreck all Monday morning. Messaging my WS mama friends asking them if it was too much to expect. Could he make it through a few hours at school without an accident? and maybe I was expecting too much too fast…
Fast forward to Thursday, after four days of school. Every day his very kind and accommodating teacher (who knows I am a mama that needs reassurance) would email me a little update saying, “Yay! No accidents, and a bm on the potty!!!”
That is basically Evan’s way of saying, “Mom, seriously….slow your roll. I’m not perfect, as we have already discussed, but I am trying my hardest. Let me try.”
Deep breath….I will buddy, I promise. I owe you that. xoxo
Phew. Our kids really teach us some tough lessons right when we need them to, don’t they? In an effort to blog and share a little more often before Baby Sister comes, I thought I’d share this quick story. Lately I have been struggling with patience, especially with our dog and our son. This is not a new struggle for a parent, I know this. Especially with a four year old. Especially with pregnancy hormones. Especially with a four year old who does not really realize/understand/care that I am supposed to have some authority over his life. Sigh…
Especially because I am hot, uncomfortable and not at my best. (I’d insert a picture here, but who wants to see that?)
We have been trying to find strategies, techniques, direction, anything to help us with teaching Evan right from wrong, especially when it comes to our dog. He has been overly aggressive with her and for some reason even though I know in my heart that she is not really hurt, and Evan does not really understand what he is doing- it GETS TO ME very badly. Like nails on the chalkboard badly. Like lemon in a paper cut badly.
I guess everyone has their things that get to them. Traffic, dirty floors, lateness….
Evan smacking the dog. This is mine. For this week.
So the other day there was a swirl of rough things that occurred in a short amount of time. We were probably late for something (not new), the dog was anxious because she could sense that we were preparing to leave the house. Evan has decided it is super fun to not want to wash his hands, get dressed, come to the car, you name it, he decides on a daily basis what he is not going to do that day. At that moment he was avoiding one or more of those things. The dog started barking at something outside, Evan smacked her and I lost it. I yelled and I think I scared all three of us. I am not really a yeller by nature and lately it has come to my attention that maybe I could become one if I am not careful.
After all three of us cried, well at least two of us. (not Zoey) Evan started marching around the room.
He bounces back rather quickly.
This is what he sang.
“We’re not perfect….no we’re not. We’re not perfect. But we’ve got what we’ve got. We do our very best, we do our very best, we do our very best each day. Cause we’re not perfect……but you know that I love you that way.”
Yup. a beloved Laurie Berkner song that we have been singing a lot lately. (he really over articulates the t’s.)
And he sang it right when we all needed to hear it.
Nope, Evan, we’re not. And I’m going to keep working hard to be patient and you are going to keep working hard to be the best Evan you can be. And Zoey, well she will benefit from both of us doing that.
We’re not perfect, but we do our very best each day. (at least we try.)
Hello my lovely, supportive, and probably bored readers. I am very sorry that I have not been the diligent writer that I was last year. I can give you numerous excuses but the biggest being that I have been falling asleep before 9 many nights and that was my prime writing time. I do want to write a separate post about this, but the big news is that our household will be expanding to 4 in September.
I’m currently 18 weeks and doing very well. Another time I will try to write about how different this pregnancy is, given our history and given we have this ball of boundless energy to contend with this time around:
Watch out! (Evan almost 4)
What I wanted to address in this post is this scenario, that I truly believe sums up most days of my life.
Have you ever entered a grocery store, thinking, okay…all I have to get are tortilla chips and salsa, so I will just grab a hand held basket and run to that aisle. Then you find yourself remembering you need milk, canned beans, and some produce that you ran out of? So you think, I can fit that in my handheld basket, no problem. It’s not that long of a trip around the store. But by the time you get to the register, your forearm is bruised from how heavy your basket is. And you think, jeez if I had just taken the time to get the bigger cart……
If that has never happened to you, then maybe this won’t make as much sense to you. But I have done that NUMEROUS times, especially when I was single and living alone. I always had the mindset that it would be silly for me to push around this big cart when I was only shopping for myself. And I almost always regretted that ridiculous assumption….
The larger picture is that this habit of putting too much into a small basket is a problem that I face with my life’s daily activities. (I apologize to my close friends who I have already shared this with) I often will look at my calendar and think, sure! We can fit in a hippotherapy session
A little snow doesn’t stop hippotherapy!
two hours before a baptism party that is 45 minutes away. I can squeeze in a hair appointment and make it home to relieve my mom by the time I promised. (and I walk in 30 min late, every stinking time) I’ll think, Evan really deserves some outside time with me, I can fit in a walk with a playground run before I make dinner (and after working 7 hours)
Nine times out of ten, I find myself at the end of one of these too small basket days, feeling very harried, very disappointed in how the activities panned out, and just plain exhausted. My husband and I both like to travel, hike, take day trips, etc but we will plan a weekend where there isn’t one moment free and at the end we’ll feel like we need a weekend to decompress from our weekend.
Sometimes I thrive on this activity, the busyness can be exhilarating, and just what I need. Other times (and more often these days), when too many things are scheduled in a day, the actual activities will never live up to the expectation surrounding them because they just plain can’t! Because we are too tired to enjoy them or because we are busy getting stressed thinking of preparing for the next place we have to be.
Today found both little E and I feeling very under the weather. I think I have a pretty bad sinus infection and he has the beginnings of a head cold or the same thing. Of course being pregnant, the only real remedies available are the neti pot, humidifier and rest.
We were supposed to attend a family celebration this afternoon and my very wise husband talked me out of it, saying, you don’t feel well right? And Evan doesn’t feel well right?…..and the logic was too clear for me to argue. Even though the guilt monster crept in as it typically does.
This afternoon Evan (who you know has not taken a proper nap since he was 2) slept for almost 4 hours.
I slept for two, and then read a fluffy novel that had nothing to do with work , therapy, how to be a better parent, etc. It was just to pass the time and help me to stay still.
I chose the bigger cart this afternoon, and I am much better for it. I think my boys are too. I just need to learn to do this when I do not have a stuffy nose causing me to make the decision. :-/
My heart has been weighed down with this blog entry for about a week. It has haunted me actually. Needing to be written. I mentioned in my last post that I’ve suffered multiple miscarriages. So it’s not a secret, but for some reason I have chosen not to really delve into it on my blog. I think partly because my first miscarriage was so wrapped up in my father’s passing, that I didn’t really process it. Evan was born a year later, and we chalked it up to one of the very common first pregnancy miscarriages that we’ve read about.
But here I sit four years after that dreadful week where I found out I was pregnant, lost my dad and then lost our first baby all in one fell swoop. Since that point we were so incredibly blessed to become pregnant again (very quickly much to our surprise) and have a beautiful baby boy.
Evan Robert June 2011
We received his diagnosis of Williams Syndrome a year later. Since that point, we went back and forth about having another child. The discussion was laden with many factors. Our age, the possibility of having another child with a diagnosis, and my fear of another period of awful post-partum anxiety. Ironically, we didn’t really discuss the possibility of miscarriage. It may have crossed T’s mind, but I didn’t really consider it very seriously. I was more worried about what would happen after the baby was here, not the possibility we might lose another one.
If there is anything I have learned in these last 4 years, it is not to count anything out. The good possibilities and the bad ones. The very good and the very bad. I tried so hard to rest in the mystery, rest in the unknown, put it into God’s hands. I had prided myself in losing the need to ask “why” all the time for the challenges in our lives. I realized that no matter what I did, things were going to happen, good and bad, and I might never know the reason. It’s in God’s hands, I would tell myself.
For whatever reason, God’s hands decided to change our trajectory yet again. He decided to take a second child from us before we could even meet him or her. I am a Christian and darn it, this has tested my faith like nothing else.
I’m pissed. I’m frustrated. I’m devastated. This time around I most definitely am processing it. Whether I want to or not. As my friend Jamie said, “The universe is making sure you go through it.” She is so right. Beautiful, glowing pregnant women everywhere. Some are very treasured friends of mine who I am thrilled for. But that doesn’t make the loss of our baby any easier. Baby showers, pregnancy announcements, smiling babies at Target. National Siblings Day was celebrated all over Facebook the other day. Another reminder that we may not be able to provide a sibling for our son. Repeated blood work to make sure my pregnancy hormones are going down. Unsuccessful blood draws that have led to repeated visits to get MORE blood drawn. Weeks of cramping and bleeding after we lost him or her. I won’t even go into the actual physical process of losing a baby. It’s horrific. I am conflicted about it because I understand why people don’t talk about it, but at the same time, when you go through it you feel so alone. No matter how many people love and support you. You are on this island, wanting to grieve your baby and still physically carrying him. It’s simply awful.
It’s not fair. I want to kick rocks and scream ala Charlie Brown.
Actually, I want to stop kicking rocks and crying. I want to get over this, and move on. But I know that’s the whole point of crying and kicking rocks. In order to get through grief, you actually have to feel it. Well jeez. That just stinks. I like to keep moving. To keep busy and focus on the beauty that is around me, not the pain and crappy stuff. It’s not really part of my genetic make-up to focus on the negative. But it’s also part of my genetic make-up to take care of everyone around me and sort of forget myself.
So…..here I sit. and I walk with Sorrow. And I am sharing it with you because it is the only way I know how to be honest with myself. The days I sat at home waiting to pass the baby, I tried to find blogs about miscarriage that would help me feel less alone, but also give me some hope. This poem gave a little light to my walk:
I walked a mile with Pleasure; She chatted all the way; But left me none the wiser For all she had to say.
I walked a mile with Sorrow, And ne’er a word said she; But, oh! The things I learned from her, When sorrow walked with me.
-Robert Browning Hamilton
So today I walk with Sorrow. And as strange as it sounds, I feel less alone for it.
I wish I could give you a big hug. Tell you that you are going to make it through the summer okay. The unbearably heavy sadness will begin to lift and change into a more permanent hole in your heart. It doesn’t sound great, but it is much better than the pain you are in now. 4 years later and I still think about him almost every day. But it is not the first thing I think of when I wake up in the morning anymore. When I dream about my dad now, I wake up happy that I had a chance to see him. It is not going to make any more sense than it does now. I wish it did. But you will find ways to remember him. Ways to honor him in your every day life. You don’t realize it, but next month you are going to discover you are pregnant. It will blow you away considering your pregnancy loss just two short months ago. You are going to get a chance to see glimpses of your father every day, through the eyes of your son, Evan.
Dear soon to be mama,
Tomorrow your life will change in ways I cannot make you understand right now. You will pace around the house tonight eating waffles and stopping every now and again to wince from what you “think” are the real deal contractions. Hold on sister, because they are just the previews. I want to tell you to breathe. Breathe in the peace, the silence, the feeling of being one with your son before he is born. Before he is out in the world and you have to care for him in such a different way. Know that things are going to change and they are going to be hard. Really hard. But I can tell you with certainty, it will not last forever. It is okay if you don’t make it without medication during the birth. It is okay if you struggle with nursing. As a good friend of ours says all the time, “no one gives out medals if you do those things.” GIVE YOURSELF GRACE.
One day old Evan in the NICU
Dear Mama of a newborn in the NICU,
It’s going to be okay. He is fine in there, he is cared for so well by those dedicated nurses. I know you want him back in your room with you so badly because he is your little guy, you can’t believe how quickly he was swept away. But in a few days you will be home with him and you will be wondering why you didn’t sleep a little more while he was in the NICU in such good hands. His levels will increase, and you will take him home. Breathe.
Evan- a few days old June 2011
Dear very new mama with newborn at home,
This is the hardest letter to write. I look at this picture and I know the turmoil you are feeling. I know the insanely strong love you are feeling for that little man but also the intense feelings of responsibility, fear, worry, and guilt that are swirling around in your very sleep deprived head. I know you feel like you are physically attached to your child, and it is hard to get a chance to shower, sleep, eat, without needing to nurse, pump, or prepare for the next nursing session. And oh the guilt…..oh the horrible, purposeless, painful guilt you feel every time you wish for a moment by yourself. And then by the grace of god, you get one of those moments and you lie there trying to nap but you can’t because you feel like you should be holding him. Everyone is telling you how awesome it is to have a newborn and you just want that to be true. Instead you are walking around like a zombie, and worrying that you are not fit to be Evan’s mother.
Okay, so that is where I step in. You are wrong. You are the best mommy that little guy has, and he needs you. He needs you to take care of yourself and GIVE YOURSELF GRACE. No one is going to judge you if you need a nap. No one is going to judge you when you need to stop nursing because it is too much. It is hard right now. Capital H. HARD. Not hours and hours of non stop joy. Hard. Your hormones are plummeting, your hair is falling out, and you are getting up 4-5 times a night to care for your son. It is okay for it to be hard. Let it be what it is and I can tell you…..he WILL sleep through the night. Not when he is three, like some very mean moms have told you……When is about 13 months he will start to consistently sleep through the night. And before then you will get blocks of 5 hours at a time which will feel like absolute heaven. And all those doubts, those fears, those ugly nasty statements of guilt and shame you keep rolling around your head? They will soon lift as well. You will realize, you are doing okay. He is in one piece. You can take showers and he will sit in the bouncy seat and be just fine. You can make breakfast while he plays on the carpet with his toys. The HARD will soon become your normal and you will not even realize when the change happens.
Evan a few weeks shy of one year old May 2012
Dear Mama of an almost one year old,
This month is going to end on a very tough note for you. You have no idea what the doctors are going to tell you about your beautiful baby boy who lights up your every day. You have been cleaning up after hours and hours of repeated vomiting. You flinch when he coughs or gags because you know what follows. You have been trying different foods and trying some of the same foods Evan used to eat and he won’t have any of it. You worry because his weight has plateaued and the doctors just can’t seem to figure it out. You are going to go through his birthday weekend telling yourself that he does not have any genetic condition. That he just has a gastrointestinal issue and medicine or surgery will fix it one day. Mama, I say this gently, but you are wrong, and as I have said before- it is all going to be okay. Evan’s diagnosis will not change one bit about your relationship with him. If anything, mama you are going to become one dedicated advocate for your son. And Evan is going to start Early Intervention services, which will be scary, strange, and hard for you at first, but soon it will become a welcome support that you look forward to each week. Evan is going to flourish with his therapists. He will be eating some solids by the end of the summer. You would never believe it, but today, at almost three years old, Evan ate chicken nuggets, fries, and apple sauce for dinner. Toddler gourmet for sure, but I know how impossible that seems to you now. But he will. Keep at it mama, he needs you to be strong for him. That doesn’t mean you can’t cry or mourn the loss of the child and future that you had all planned in your head. Tears do not negate strength. They are a sign that you are being honest with yourself. But please know, that as you learn more about Williams Syndrome , the easier it will all become. Evan is going to do some amazing things. Just wait until you hear him say “I love you,” for the first time, ride a horse, and walk across the playground. It’s all worth it. He’s even going to go to school in the next few years. I know, don’t throw up. You are going to survive it. It is going to be so wonderful for him. And for you and Todd.
First Day of School for Evan (27 months) September 2013
Well….I did it. We did it. We made it through week one of Project Return to Work. The last day I taught in a classroom setting was in April of 2011. I was 9 months pregnant and incredibly eager to meet my son and become a mother. I can honestly say I had NO CLUE what the next two years would bring.
None. Zip. Nada.
I didn’t know the excruciating pain of labor. I didn’t know the extreme joy of holding my first born child after carrying him around for ten months and five days. I didn’t know the turmoil that sleep deprivation can do to your emotions and your psyche.
Saying hi from my classroom.
I didn’t know much I would need and love having my mother in law stay with us when I struggled with anxiety and insomnia in the months after giving birth. I didn’t know that being a mother is not necessarily an inherent skill you are born with. It takes work and experience just like any other job. I didn’t know that I would miss getting dressed for work in the morning and the adult conversations that go along with having a job outside of the house. I didn’t know how guilty I would feel for missing those things.
I didn’t know how much guilt stinks.
I didn’t know how being a SAHM sometimes feels like high school all over again, with the mommy cliques and the comparison conversations that go on at the playground and indoor play facilities. I didn’t know how much richer my relationship with my mother would be through becoming a mother myself. I didn’t know how important it would be to make sure to have a child free conversation with Todd every day. I didn’t know how hard it would be to leave Evan with a babysitter. We still have not “hired” someone outside of our circle of family members and friends. I didn’t know how exhilarating it would be to have a baby free dinner with Todd. I didn’t know we would find out our child has a rare genetic condition. I didn’t know how life changing a moment in a doctor’s office could be.
I didn’t know how hard it would be to be around my friend’s children for a while. I didn’t know how desperately I would try to find a reason to believe the doctor might be wrong. I didn’t know that one day I would realize my child was going to change people’s lives. For the better. I didn’t know how music would bring so much joy to our child. I didn’t know that I would end up taking an additional year off and have no regrets. I didn’t know how I would go from wanting to work, to not wanting to work, to needing to go back to work and all the emotions that go along with it. I didn’t know the power of online communities. I didn’t know I would make lifelong friends on a support board. I didn’t know I would wear a Williams Syndrome awareness tee shirt to the store and hope that someone would ask me about it. I didn’t know how the half hour after nap time would become my most favorite time with Evan. I didn’t know how important early intervention is. I didn’t know how much I would value Evan’s therapists.
I didn’t know how hard it would be miss some of Evan’s therapy sessions because of work. Again, I didn’t know how much guilt can really stink. I didn’t know how hard working moms work. I didn’t know how hard stay at home moms work. I didn’t know conflicted I would feel about being both of those things. I didn’t know how hard it would be to give up the amount of control I have over Evan’s life. I didn’t realize how much I value being in control. I didn’t know how two big blue eyes could just fill up my heart and tear up my insides all at the same time.
I didn’t realize how blessed I was, and would continue to be.
I have been trying to find the time to write this post for weeks now. I have found myself thinking a lot lately about how grateful I am to be on the “flip side” of different situations.
For example, -I am very glad to not be 40 weeks pregnant anymore. Glad to not be sitting on the yoga ball, rocking around trying to make contractions happen. Worrying about how our child was doing inside of me. I am glad to have him here with us, growing stronger every day.
-I am glad to be almost three years out from losing my father. Please do not read this to mean I am glad my father is no longer with us. That could not be further from the truth. But I am glad to be past the brick-on-my-chest, excruciating grief stage that came for months to follow. I am glad to be at a point where I can talk about it him without crying. (most of the time) I can laugh and share stories about his colorful life with friends and family as to keep his memory alive.
-I am glad it has been almost a year since receiving Evan’s diagnosis. We are far from feeling completely at ease with everything, but I know that I feel much more settled than I did last summer. I know that it seems like I am always trying to put a positive spin on things on here. And honestly, I probably am, but that is because this is my blog, and that is just how I operate a lot of the time. I just don’t see merit in focusing for too long on the negative. It doesn’t get me anywhere. I still get mad. I get sad. I ache inside for many different reasons at different times. I am sensitive and emotional and have been my whole life. But that sensitivity also allows me the ability to see the struggles of others. And our struggles just don’t seem as monumental as what I see happening out there.
A few weeks after finding out
And although I wish my little guy would not face adversity as he grows, I also realize that he is incredible. He is incredible because of ALL he is. And that includes having a genetic condition called Williams Syndrome. That includes his raspy giggly voice. That includes his constant vowel sound imitation. That includes his dislike for pieces of fruit. That includes his engaging, sparkly blue eyes. I could not realize that right away. I could not get past the websites, the pictures, the descriptions of what his life might be like 5, 10, 20 years from now. I couldn’t accept that our future was going to be different from what we had pictured.
But I am on the flip side now.
I am helping to organize a 5K walk and run to benefit the Williams Syndrome Association. I organized an event at a local restaurant as another fundraiser. I have met several families with children who also have WS. I have made amazing friendships with some women that I feel extremely connected to in a very short amount of time. I don’t know when the transition happened. When I crossed over into a different world. A world of celebrating the little things. A world of special needs blogs. A world of weekly early intervention appointments. A world of research studies. All that matters is that it did. Sometimes I read accounts of other individuals who are struggling; who are barely keeping their heads above water. Life has decided to kick them in the gut with something too hard to handle. It could be a diagnosis, a loss, shocking news. My wish is that they could know in their heavy hearts that they, too, will be on the flip side. It may not be tomorrow, it may not be the year to follow. But they will get to that flip side. Hang in there. Remember other difficult times you have muddled through. You will get there.
My friend Caitlin (who is also expecting her own little Baby P) sent that link to me today. It is a nice video with quotes from mothers. What would they say to their former pregnant self right before the baby is born……
The song in the background keeps repeating, “I am days away from change.” How poignant for me right now. I could be one day, or just hours away from change. Who knows?
My grandfather (on my mom’s side) would have been 100 today. Would have been really nice to share that special date with his great great grandson. I also realized that May 29th last year was the last time I spent time with my father before he passed. We went to the Turkey vs. USA game with my dad and Dave Lukens. It was such a wonderful day. I really feel blessed to have that particular memory as my last one with my father. We tailgated before the game and had great food and brews and we just laughed and talked. I had forgotten how fun it is to watch soccer with my dad and how excited he gets. I sat in between him and Todd and I was so happy. I will never forget after the game, the ramps we had to walk on to exit were so crowded and Todd and Dave were walking a bit ahead (my legs are so short) and I started to feel a little overwhelmed. My dad turned around, grabbed my arm and said, “Hey girl, are you okay back there?” and he led me out of the crowd. Even at 32 years old, he was still taking care of me.
Todd, my dad and Dave before the game
My dad and I at the game. Last picture I have with him. I was so happy.
Part of me thinks maybe God will have our baby arrive on 5-29 so I have a new memory to associate with that date.But honestly I don’t ever want to forget or replace that memory. That is why I shared it on here. I want to be able to remember it and share it with our son one day.
PS: I did just have a contraction…….. But don’t get all excited, I have them sporadically throughout the day, they have to start coming quicker and harder for it to mean something. 🙂