Thursday, May 21, 2015

To all the families out there who just had a child with special needs... YOU GOT THIS.

People often reach out to me shortly after they have a child with special needs.  I wonder if that is because they think that I surely must understand what they're feeling, as I've gone through it twice myself. While I am honored to be contacted and I love to help whenever I can, I sometimes wonder if I am the best person to be dishing out advice. Just because I have two beautiful daughters with profound special needs does *NOT* mean I have all the answers.  In fact, many days I still feel like I am drowning, splashing and bobbing in a sea of confusion, waiting for that perfect person/situation/doctor/remedy/voodoo/natural cure to throw me the friggin' life preserver and save me from feeling so lost. 

In addition, giving advice is also tricky because it is damn near impossible to compare kiddos, as no two are the same, and as I've found in the past, doing so can only make things more scary and complicated.  I remember searching early on for that ONE KID who was JUST like my Claire.  I was positive that if I found him/her, that I would have all the answers to the lingering questions that circled through my mind day in & day out that I could not seem to figure out on my own.  I remember my dear friend Rachel, a veteran special needs mama, telling me that basically I was pissing up a rope. She explained that this so-called "match" didn't exist, probably never would, and that this wasn't necessarily a bad thing.  It just meant that my daughter was unique, perfect, & her own little individual charting her own little course.  I cannot tell you how much this terrified me initially. 

That being said, it was these veteran special needs mommies that I met early on who, quite simply, kept me afloat. My online community was my lifeline. They answered my never-ending questions, gave me support, comforted me, and cried with me. We have become "real" friends over the past 13+ years, and I am so grateful that I've been able to meet a few of them in person. They probably know me better & understand my struggles moreso than many of my friends and family who live nearby.  To them I say a sincere THANK YOU.  Thank you for lifting me up & keeping it real with me all those years ago.  I have made it my vow ever since to do the same whenever I can, and I urge anyone who reads this to "pay it forward" any way you can as well. Your experiences and wisdom could change the course of another fearful new mommy's life.

If you are starting out on this journey into this world of special needs, I would tell you this... YOU HAVE SO TOTALLY GOT THIS.  That's right.  You've got this.  Even though I don't know you personally, I "knowwwww" you.  I've BEEN in your shoes.  And you have GOT THIS.  I know that fear you're feeling that is just under the surface at all times, literally 24/7.  Just typing those words caused me to well up with tears myself, because I'm not shitting you when I say that it's still RIGHT THERE for me, too... yes, 13+ years down the road & these emotions are still running high & I STILL feel that sense of sorrow because I remember it like it was yesterday & it is unlike any other feeling I've ever felt.  I am pretty sure it is something that will NEVER leave you, no matter how your child's story concludes. And I don't tell you this to scare you or discourage you, but I tell you so you know I'm human & not some robot mom who thinks she has "special needs" all figured out.  It still floors me from time to time.  I still randomly ugly cry in the shower where no one else can hear me for no reason at all except straight up FEAR OF THE FUTURE.  I still ask my hubby if he's "OK" about all this & if he still gets sad that our daughters won't have typical lives like their big brother.  I still have fits & question God & scream & curse & hug my daughters & slather them with kisses & overprotect Cal & cling to THIS MOMENT often because that's all I've got.  The HERE & NOW. 

Emotions & letting yourself feel things is very therapeutic. Coping with life not going "perfectly," adjusting your sails & realizing it is STILL perfect fucking rocks, too.  I know that worry, that struggle to still live your life while searching to find what that new life entails.  I understand your desire to maximize your child's life fully.  I feel the love... the deepest love I have ever known or experienced... the kind that literally feels exactly like the Elizabeth Stone quote states, "It is to decide forever to have your heart go walking outside your body." And just typing that quote made me shed a few more tears because neither of my daughters are able to walk but they are SOOOOOO my heart.  I know all about the relationship/sleep/marital/friend/therapist/doctor/research/social/school/etc. struggles. And still, despite all of these strikes against you, YOU HAVE GOT THIS.  No question.

Know why I know this?  Because I know you were given this life for a reason.  I truly believe you were chosen to be your child's parent/grandparent/aunt/cousin/sister/brother/uncle/bestie/homegirl/bro/etc.  Yep.  No accidents.  I don't think it is chance that this occurred.  I am pretty sure moments of your life leading up to this point have perfectly prepared you to take this on.  I remember saying early on that I couldn't figure out why *I* was chosen to be Claire's Mommy.  Why not ___<insert more qualified mommy's name>___?  She was SUCH a better Mom with more faith & understanding.  Looking back now, I KNOW Claire was meant to be my daughter, as was Lola. They have completed our lives as only they could.  They have made me ME & made us US. 

I have to say this because it's SUPER important... but please PROMISE ME that you will never let any doctor, nurse, specialist, expert, etc. tell you with 100% assurance what your child's future holds.  No one knows that, and quite frankly, often times it's a piss poor prognosis that they give. They're best at giving worst case scenarios for any given situation, as they'd rather set you up to fail and end up being the hero when that doesn't occur vs. saying all will be well & then something awful happens & they look like a dick. They can give you their best guess, a hypothesis of what they have seen in the past with similar situations. Take that all to heart.  But let me tell you this... they have NO IDEA how strong your child is, and they DAMN SURE have no clue how strong YOU ARE.  Together, you and your child-who-happens-to-have-special-powers (I mean needs!) are an unstoppable team. (Special needs parents are notorious for being the parents least likely to get fucked over/talked down to by doctors.  Pretty sure there is statistical documentation of this somewhere at WebMD.  HA!  We are Mama Bears & we protect our cubs at all costs!  Yet another reason you've SO got this.)  Remember that all that gloom & doom is nothing but words & numbers & useless statistics.  Your child will write his/her own book.  Let that shit unfold.  Be ready to have your world rocked.  Highest of highs & lowest of lows, baby.  Enjoy it all.  It it changing you.

Over the course of this adventure, you will encounter some terrifying things; things so horrifying that at times you feel as if you are having an out-of-body experience.  I recall a time when Claire was 3.5 years old and was rushed to the hospital with extreme dehydration due to Rotavirus.  At one point, a doctor asked to speak to me alone in the hallway.  He proceeded to tell me that there was a really good chance that Claire would not pull through this illness.  He had seen typical children not survive this level of dehydration.  He wanted me to know that death was likely, due to her special needs.  I remember feeling like I was watching a heart-wrenching episode of Grey's Anatomy or ER vs. living this in real life.  To this day, it still feels like a dream.  I remember going back in to see Claire, and I felt such a sense of peace that this was not her time. She looked into my eyes, and I knew she was going to pull through.  And she did.  That's the beauty of these kind of relationships -- the connection she & I have on that soul level...  Feeling deeper, communicating without words, loving harder.  Don't get me wrong, I wish sometimes I could hear her speak, listen to her feelings, and understand her more, but there is something so precious about communication on a soul level. An inner knowing... that peace that comes with being still in a moment such as this... the intensity of our love & connection as mother-daughter.  Knowing how much I have invested in this precious life & fighting like hell to salvage it all.  Gives me chills still.


No matter how limited your child is with regards to communication, know that you will find a way to understand his/her needs.  You will know every grunt, whimper, gasp, cough, squeal and decode it like a skilled CIA agent. (You will be the next Jack Byrnes from Meet the Parents!  Your Circle of Trust will be a tight one, lemme tell ya'... HA!)  You will become an expert on your child in ways no doctor could ever rival. Surround yourself with knowledgeable doctors who will lean on you to educate them about your child vs. questioning your parenting methods because they aren't "the norm."  Find a doctor who will research things they don't understand, commend you on your parenting/detective work to figure out issues that arise, and support you the best way he/she knows how by offering medical advice & tips while still respecting that maybe you NEED to do things differently.  Seek out a doctor who sees the value and worth of your beautiful child who is different. And most of all, trust your "Mommy Instinct" because it will NEVER lead you astray. Remember, you know your child better than ANYONE.  This is so important.  

This "team" you are assembling is key.  I am not just referring to your support system at home -- family, friends, online groups, local moms of children who have special needs, etc. -- but I am also referring to your team of doctors, specialists, nurses, therapists & teachers. You will be spending a huge chunk of your time with these individuals, and it is crucial that your team understands your child as you do. You are now the president of an elite organization, and it's your job to be sure your team is running smoothly & everyone shares a common goal.  I often hear horror stories & nightmares about IEP meetings for therapy/school, and all I have to say is that I LOVE OUR IEP's because everyone is on the same page, we all want to optimize the hell out of the girls' lives, and we all fiercely love & protect them in a maternal way.  ASSEMBLE A QUALITY TEAM.  Make up informative fliers or booklets describing your child as well as your wishes, hopes and dreams for your child & his/her future.  Aim high, and remember how very strong & able your child is!  My best friends are my girls' therapists, caregivers, & nurses because I love how they love & support my girls.  I love how they love & support ME.  I love how they are fully committed to providing a level of care for my girls as if they were simply their own.  FIND THAT.  Don't settle for anything less. It sucks to have to let someone go, but trust me when I say that there is always someone out there who will give more, be more, love more.  You've got this.

Oh hey, I hate to break it to you, but jealousy is a dirty little bitch.  Sorry, but it had to be said. But OH MY GOSH, it's soooo normal.  I still catch myself saying things like, "Why couldn't both my girls have had Down Syndrome/no legs/super long legs/MS/MD/VD (HA!)/blindness/fill-in-the-blank-for-the-day instead?  I might have rocked that harder!!!"  It's pathetic and actually quite comical, but let yourself feel it.  I remember seeing our girls when they were under a year old compared to other kiddos their age, and the differences were pretty drastic.  I was so pissed that my girls couldn't sit up/crawl/smile/use their hands/nurse without major modifications/say "Mama"/shit without the help of The Shit Whisperer/work elaborate floor puzzles larger than their bodies... geesh, you name it. For a long time, I dreaded playgroups & get togethers with similarly-aged children.  I would go, put on a happy face, gloss over any difficulties we were having, try to relate to their lives, then go home bawling because I felt so fucking out of touch.  It was challenging on so many levels.  I lost friendships, it stressed some family relationships, and I felt more alone than ever before.

But a new world was opening up for me with reliable people who understood my feelings almost better than I understood them myself.  I was meeting new friends, weeding out those that weren't there for me, and bonding further with my husband & our close family.  Shit works itself out, yo. Let yourself feel it ALL. Cry, scream, yell, throw things, throw yourself off your deck (if your deck is 1 ft. off the ground!), call a friend & bitch, email me & bitch, just act like a bitch in general.  You are entitled to your feelings.  And denying yourself of them isn't healthy.  FEEL.  IT.  ALLLLLL.  Trust me when I say that these feelings will pass. And your beautiful child will still love you unconditionally & probably will delight in seeing you be a badass rebel who throws fits like nobody's business while simultaneously dropping more F-bombs than a sailor.  Oh wait, maybe that's just me!

Early on during Claire's first year of life, after being told that she likely would not live to be one year old, we not only met people who had lost children, but we also watched children we had gotten to know and even met in person pass away as well.  There are no words for how this shattered me.  I grieved for them, for their families & loved ones, and mostly for their children, whose lives were cut short.  Selfishly, I grieved for myself & my family.  I grieved for my child.  I grieved constantly... the first 18 months of Claire's life was extremely difficult.  I remember reaching out to several moms whose children had passed away.  I said, "I feel like if I grieve some now, I maybe won't have to grieve as hard later.  I am already grieving for the loss of 'the dream'... the loss of a typical childhood for my girl.  I just want to stop grieving.  I just want to be happy." And the answer I received every time was that no amount of grieving NOW will lessen the grief later. Grieving now is only wasting precious moments I currently have with my child.  There is NO WAY to prepare for losing a child.  No parent should EVER have to go through that experience.  But I have always held tightly to their words, and I believe it was their words that changed my whole outlook on our life. Why not make memories NOW -- laugh, love, smile, enjoy life, not let this disability stop us from having the lives we always wanted.  Our mission became finding joy amidst the struggle.  I just wanted to love my girls & our son with everything in me because they SO needed and craved that and it healed me in the process.  It STILL heals me.

Looking back on the past 13+ years of my life since Claire was born, there are some things I wish I would have done differently along the way.  First off, I wish I would have placed more of an importance on my marriage and relationship with my husband, Scott.  It wasn't until the last few years that we really focused on doing date nights or taking a walk together or going for a swim or (gasp!) a solo trip, just the two of us. According to a quick Google search, I have discovered that the divorce rate among typical families is 50%. In families who have one child with special needs, this number skyrockets to 80-90%.  I shudder to think of what it is for families who have multiple children with special needs, but honestly, it doesn't matter. We feel that we've been drawn closer together as a result of our children. We have since made it a priority to focus more on one another, and for this, I am SO GRATEFUL because Scott is truly my very best friend, my best listener, my best adviser, and the one who makes me laugh the most.  I need him.  I could not survive without him, and who else on the planet would understand this life any better than him?

Photo by Gavin Peters

I also wish I had found a way to get more sleep along the way.  We spent a decade surviving on mere minutes to hours of sleep nightly.  After developing health concerns of our own due to the physical toll that sleep deprivation takes on a body, we finally arranged to have nurses help care for our Lola at night.  I cannot tell you how hard that was to do... to admit that I couldn't do it myself any longer, to show weakness, to entrust my child to a total stranger, to think that my child is drawing comfort from someone other than my husband or me... I felt like a failure.  It was after I got a few weeks of sleep and my sanity/clear thinking returned that I realized this was one of the best decisions we ever made.  It is SO DAMN HARD asking for help.  It sucks to feel that I alone cannot meet my child's needs 24/7.  But now, a few years in, I literally have "No Ragrets" now. (I love We're The Millers!)

Cali P's Halloween costume in 2014!!!

Lastly, I have found the importance of finding healthy ways to manage my stress.  This stress clearly is not something that will go away anytime soon.  No matter what the future holds, stress will be part of my life.  I encourage you to find a way to deal with this whether it be yoga, fishing, meditation, Pilates, running, helping others, volunteering, spending time in nature, doing the horizontal mambo, gardening, lifting weights, reading a book, etc. Find something that makes you happy, and find a way to do this at least an hour, 3 times a week MINIMUM.  If you can squeeze it in more often, DO IT.  You are so much more than just your child's mommy or daddy.  You deserve to have time for yourself, and honestly, it is important.  Don't let anyone make you feel guilty for needing this time away.  Scott & I started getting monthly massages years ago. It is something we really look forward to.  I go to Pilates 2-3 times a week, and I try to walk or swim as many of the off days as I can.  Scott plays basketball with the guys 1-2 times a week.  We take Cal to the gym and rebound for him as he works on his basketball.  We get the girls into their therapy tub as much as we can & that is just as relaxing for us as it is for them!  I am still learning ways to cope/stay calm/not panic/not shart myself when the girls get sick.  This is a challenge for me.  I literally can immediately feel an adrenaline surge, and the thought of a possible hospital stay makes my teeth chatter -- no lie.  Promise me you will FIND A WAY TO DE-STRESS.  It is absolutely necessary for your health & well-being, and it will keep your body healthier so you can continue to be the awesome parent/cheerleader your child needs.

Remember that feeling you had when you first saw your child... the love that consumed you and the intensity of that emotional experience on day one?  Think of that love each day.  Remember that love is all that truly matters. Your family is setting such a beautiful example for everyone around you.  It is drawing your close and extended family closer together & forging tight bonds that you might have never had otherwise.  Live & love in this moment -- in the NOW.  You are doing a great job. I am so incredibly proud of you.  Remember that you are never alone.  You will likely be able to love the baby stage a little longer than most.  I still get to cuddle and smooch the cheeks of my 9 and 13 year olds!  They still want to be around me (though I do still embarrass them)!  Our bonds have strengthened over the years.  Both Claire & Lola have continued to blow the doctors' prognoses out of the water (and I have continued to remind those doctors of that fact yearly!). Yet I still pray & beg for more time with them (every birthday candle wish since 2001).  I just want to make more memories... I just want the world to continue to see how important and meaningful my girls' lives are JUST AS THEY ARE.  There are no words adequate enough to convey what they have always meant to me.

Sorry for writing a book, but there is just so much I needed to tell you.  I wish there was a way I could take away your pain & fear.  I wish I could show you a glimpse into your life even 1 year from today.  You won't believe how much you are capable of growing and loving.  You can thank your child for that.


PS -- One last thing... Let that "Mommy Guilt" go... for real.  Stop taking the blame for your child ending up with special needs.  Quit blaming your "faulty genes" or the fact you colored your hair or ate GMO's or didn't drink your own urine each morning (people actually do that shit!).  Your baby was meant to be yours, AS HE/SHE IS.  I promise.  Go rock THIS life.  You've SO got this.


Kasey Haley - Michael's Mom said...

Beautifully written Gwen. I wish I knew you when... Love to your and yours sniff..sniff...sniff

Dianna Ferguson said...

You always have the right things to say. you are an inspiration to all. God put you on this earth to help others and let them know its okay to have a special needs child. Keep up the good writings. Hugs!!!

Unknown said...

Beautiful Gwen. You spoke with so much love from your heart and it brought tears to my eyes. The dear Lord knew exactly what he was doing when he gave you and Scott such beautiful girls. Cal is an awesome brother. You are blessed. Love you Nancy

Rachel said...

Love you, Gwen. Excellent words that even a tired old veteran mom like me need to hear and remember afresh every now and then.

Nan said...

Excellent post, Gwen!! Remembering back to those early days still shakes me some days. Finding friends online was such a blessing and amazing gift as we unwound all that tangled web of diagnosis and therapies and worries and fears when Sev was little. So glad you've been part of our journey!

Carolyn said...

I am so proud to call you my friend, Gwen. Great advice and inspiration for all of us. I'm grateful to have you in my life!

Cindy said...

Big hugs to you, Gwen, and your amazing family. Well said! Your heart shines right through. Part of the reason we all need this support network is for periodic reminders like this. You've reminded me that there are some things I've ignored in my own self care for the past few years. THANK YOU! You most definitely GOT THIS.

Anonymous said...

I have seen all of your daughter's costumes.

Pirate, witch, lobster, chef, gangsta, etc

But do you know which one would fit their personalities?

Lola as a devil and claire as an angel

Also I have a question, I saw your pics of your daughters with other children with special needs (microcephaly)

How do they interact? Do claire and her do anything together?

Also claire is changing a lot, she already looks like a cute teen girl :)

Gwen said...

The girls interact by fighting actually! Claire will put Lola in a headlock & Lola cries in Claire's ear. They look at each other. They touch each other but sometimes it is meanly - like scratching! Other times they cuddle and go to sleep together. Typical sibling rivalry issues! Ha!!!

We considered a devil/angel on Cal's shoulder Halloween theme one year actually. Hahahaha!

Claire is changing a lot - I agree. She will be 14 this July! Still cannot believe that! Love them both so much!!!!

Kathryn Sparks said...

I've been a quiet reader of your blog for the last couple of years and have loved watching the amazing progress of the girls into tweenhood in the footsteps of their equally amazing brother. All sound like the best sort of treasures a parent can wish, each in his/her own way.

This post grabbed me in a new way, though, too. If you don't object (I will await your word), I want to highlight it on my own blog. I don't normally publish anything that I didn't write or illustrate myself, but in writing, supposedly, to the parents of special needs kids, you offered insights that are so universally applicable to any of us who find ourselves with different realities than we had fantasized or expected in life, I think others should hear your uniquely graceful, bracing, hilarious, and touching take on the how-to and why-not of holding fast to our hopes and keeping up with the business busywork that make them possible.

Meanwhile, whether you are comfortable with my connecting others to your post in my own or not, I thank you for the profoundly and deliriously delightful way you share your life with us here on your blog.


Gwen said...

Honored you would want to share this. Thank you & you are welcome to do so! Do you mind linking to my blog? Thanks!!!! Very touched by your words. Xo

Sonya Lillis said...

oh Gwen you are amazing. seriously rock star mom!
reading this post really helps me, because we are considering a PCA for Teal'c. I've been conflicted about it and feeling like a failure for not being able to be his "everything" all the time.
thank you for sharing your thoughts for others to be inspired by it.

Anonymous said...

My mom has been reading your blog for awhile now and raving. My wife and I have a daughter, Maisy Linn, who is 20 months now, with microcephaly and a few other diagnoses. This is the first post we've read, but it hits the nail on the head. Our journey started a little over a year ago and we've gone through a lot of what you've talked about. We've had the exact same thoughts and feelings. Thank you for putting it into words and making us laugh/cry at the same
time. I think you've saved us thousands of dollars in therapy sessions!

Kathryn said...

Thank you kindly, Gwen, I'm just getting back here again to check and will happily put up the link to your post this week! Have a superb week yourselves, you and your fabulous crew. :D

Kathryn said...

Hello again, Gwen! I just posted my bit to send readers to you, but as I'm on WordPress I'm not certain how to link with your blog other than to embed a link on *mine*—which I've done. Here's where *you* can go to read the intro I gave you. Hope it's okay!


Gwen said...

Just read your post, Kathryn - I am so incredibly touched. THANK YOU for the kind words and for featuring my post and blog. I feel honored. I loved everything you said - thanks again!!!!! Big love from us to you!!! Xoxo

Ashlea said...

Thank you. I really needed this.

Asha said...

Why don't you uncross her legs?

You had a pic of her with legs uncrossed

can't you do it manually? maybe she will be happier that way

Gwen said...

Hey Asha & Anonymous who keeps posting countless rude comments about the girls' legs being crossed - the girls have cerebral palsy & their legs cross due to that. It is something we work on 24/7 and it is damn near impossible to uncross their legs. We try. We stretch them constantly and work against their increased tone constantly. They have issues with scoliosis and hip dislocation due to their CP & this causes even more pull on their legs, causing even more crossing. Doing the best we can here. Really would prefer support vs negativity about what you THINK you see & your expert observations. Thanks!

Anonymous said...

Can Claire drink water or it is administrated by the G-tube?

Gwen said...

She is given water through her gtube only. She does not eat or drink anything by mouth.

philine rodriguez said...

video of max, a kid with microcephaly talking with his mum

why lola and claire can't talk? is due to their muscular problems?

i mean what is the difference between your daughters and this boy

when will they be like this?

i would pay a million to hear claire first words

have you though about doing a positron scan to see if there is activity in their brain? maybe in they can make her talk through a machine (no kidding)

berkay okhan said...

I'm Berkay Ockan from Antalya, Turkey

I too have a girl with microcephaly. She name is Aygül, is a kurt name which means qt. she also has another problems such as dwarfism (she 106, 85) and lack of ovarium (which causes her to have low test)

She brain is small but she can walk and talk no poroblemo. But she cant wrait or read in schol

Me religion is Mormon although sometimes I lose faith in Yahev (sorry)

Thank you for your webpage very inspiring

Gwen said...

@BerkayOckan -- Your daughter sounds amazing! Thanks for reaching out. I think it is normal to question our faith at times of sorrow... we have been through something similar, but we now believe things are working out exactly as they are supposed to be. Keep the faith as much as possible... your daughter will show you what the future holds for her. She already is doing very well, it sounds like! Congrats to you & to her on all your hard work! Cheers!

Gwen said...

@philinerodriguez -- I appreciate your concern about the girls & their speech. We actually know Max & he is an amazing boy. Both he & the girls have MSG (microcephaly with simplified gyral patterns). There is an upper and a lower group. He is higher functioning in the upper group & the girls are lower functioning in the lower group. Their brains likely look quite similar on MRI scans. I used to really worry a lot about why they couldn't walk or talk or speak or sit up or smile socially. I was so upset by this. I craved it. It continued to not happen. It was really emotionally straining for me early on especially. Now, I'm past that. I just want my girls HERE. Would I love to hear them speak? OF COURSE! They do make sounds & noises & cry. I love to hear them. But they probably aren't going to speak works like Max is able to do. Their brains are not as fully developed as his is, apparently. They are limited in other ways, but I don't think the muscular problems are what the problem is speech-wise. I just think they aren't able to do it. Maybe someday they will? I don't know. It just doesn't matter to me anymore -- if they do it someday, I will be thrilled! If they don't, I won't think less of them for it. Thanks for caring though. I really appreciate it.

Anonymous said...

don't ever listen to the haters

they are just bully nobody loves them as much as you love claire and lola!!

continue the good work!

Unknown said...

Oh Gwen, this was the best book ever and I really feel and know this by heart. You are sooo beautifully open and it is amazing to read. I feel so proud over you (and also me, being quite a bad ass mama...Really. ..)! Big laugh and big cry! !! Grandes besos! !! THANK YOU☆♡☆♡☆

Anonymous said...

I just want to let you know that reading your blog is part of what has inspired me to finish my bachelors degree and switch my major from psychology to early childhood education with a focus in special needs. So thanks. :)

Mary said...

What is your religion?

I always found in Jesus the support I needed to take care of my daughter with special needs (she has down syndrome)

Anonymous said...

I declare myself a Claire fan!

I love how she walks and how she kiks her legs in the pool!

Continue the good work!

Anonymous said...

Gwen, this was absolutely beautiful. From beginning to end. Thank you! Thank you for the reminder that indeed "I got this!" Your family is absolutely beautiful!! May God continue to bless you for many moons/years to come! xo

Sienna Farris said...

I'm in the Microcephaly group on Facebook & I've found your comments/posts so positive & uplifting. This blog post is really what I needed to read this morning as I go through this journey with my son. Thank you!

Trish said...

I just sort of happened upon your blog. My daughter was born with a genetic condition as well. Reading this brought back memories for me. I was surprised to find myself longing for those days. As hard as they were, I had such purpose and drive. My daughter died at 8 1/2 years old. She took her last breath in my arms and while I know she found peace in leaving the body that was betraying her, she took so much of me with her.
I feel compelled to tell you that I know it's hard. I know the thoughts that bounce around your head on dark days. Relish your beautiful daughters more on those days. Hold them. Take lots of pictures. Make memories. You're living the golden days right now. Remember to nurture your relationship with your son. And finally, know that you can survive this.
Prayers for you and your family

Gwen said...

@Trish -- This made me tear up because I know you are SO RIGHT. THANK YOU for saying this. THANK YOU for reminding me of this -- that these are the golden days. That someday I will long for this moment. That even though it's damn hard at times right now, I will miss this at some point. THANK YOU. JUST what I needed to read/hear tonight. Hugs from us to you. I am so very sorry for the loss of your precious daughter. I can tell what she meant to you & I can feel the aching in your words about how much she is missed. Grateful she was a part of your life & that you had the privilege of being her Mommy. BIG LOVE from us. xoxo

Unknown said...

I just want to say that you are inspiring in a way that lets me know I'm still ok. My daughter was born with an extremely rare genetic syndrome. She just turned 3 and she is amazing! We are beyond blessed to have her, but the bucket of effed up emotions that come with having a child that isn't "normal" is a pain in the proverbial ass! I am learning how to be so much more than I had ever planned for if that makes sense. So I could probably ramble endlessly, but thank you for letting me know that I can have faith, be strong, cry like a dying animal and cuss in a fashion that would make the average sailor blush and still be everything my little girl needs! I'm her mama and she is my world and no amount of science changes that fact!

Kimberly said...

I came across your blog today and just read this entry. WOW. I'm sitting here blown away. Thank you for sharing all that. It touched me greatly. My daughter has juvenile arthritis, which I know is very different than what you face, but it has its own challenges and I still get pretty down at times. You really inspired me to work harder at the "living in the now" instead of worrying about the what ifs. Thank you.

Unknown said...

Gwen, You are such an inspiration. Not just to Moms of special needs kids, but to all parents. This post is just plain awesome. Every child is exactly who they are supposed to be. As worthy of love as any. I love how you celebrate life and find the joy and humor in each new day. Thank you for being you and sharing your life with us. I hope you know how much your pearls of wisdom give us courage and strength. Hugs, Debbie

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