Tag: motherhood

A prayer for strength

Do not look forward to what may happen
tomorrow; the same everlasting Father who cares
for you today will take care of you tomorrow and
every day. Either He will shield you from suffering,
or He will give you unfailing strength to bear it.

Be at peace, then. Put aside all anxious thoughts and
imaginations, and say continually: “The Lord is my
strength and my shield. My heart has trusted in Him
and I am helped. He is not only with me but in me,
and I in Him.”

Today is our genetics and ENT appointments; tomorrow is pediatrician and then another meeting with the Clark school and the city to discuss her services. I just got off the phone with the school and was told her treatment will be 2x a week every week across the city and uptown. Well…… this is making our plans for day care close by really tough. Clark doesn’t do home visits so we’ll be figuring that out soon. It’s kinda far -up on the upper east side so we’re going to start getting really comfy on the bus and commuting. None of this is to complain, just to admit to myself that this feels overwhelming. When my baby girl deserves to be just playing and laughing and pulling on her puppy’s ears, but instead we’ll be spending our playtime heading all over the city. I know, I know… it’s all for her and for the best and it’s important. Of course. I found the prayer above online and loved it b/c it doesn’t allow me to throw myself a pity party.  I know that sounds pathetic that I’d even consider it….. it’s just hard sometimes.
Today may we face these appointments and whatever news we may hear with strength and courage. The love I have for Landon knows no bounds, so when I feel weak, her little face will be the light I need to smile again and keep moving forward.
xoxo

Eloise ThomeLeave a comment

Anticipation

Last week we had a break… a nice lovely week with no appointments. It was great but allowed for major anticipation of this week.  This morning we had our Clarke School initial evaluation, tomorrow is ENT and genetics and Thursday is pediatrician to see if baby girl has gained any weight.  

This morning’s evaluation was great actually. A breath of fresh air honestly. The process…is daunting though.  After the paperwork is filed, there’s a meeting with the city downtown, then another evaluation at the school, the waiting starts for the baha hearing aid, then another meeting with the city for approval of services, then…. services begin.  Because I’ve decided to stay on the bright side..this was step one and it felt great to make some progress.

We’re feeling good today though… my little angel will hopefully get her hearing aid in the next two weeks. Hoooo-ray. The rest… will unfold as it may. 

This baby girl has changed my life- I’ve never felt like I’ve had more purpose in my life. Although I love what led me to this point in my life…  championing Landon and working hard for her to have a completely full life is my everything now. I know she’ll lead a great life- full of possibilities- for now my focus is to fill it with sound, help her communicate and hold her little hand as we see what else comes our way with her precious face. I’m not sure what job I’ll hold but if it can somehow, some day be tied to helping other families move through similar adversities… I’m game.  I think this is what I’ve been built for…what I’m made of is to help others.  But first thing first… time to feed the little bug.

xoxo

eloise

Eloise ThomeLeave a comment

Side Stepping Guilt

It’s so easy to let guilt consume me.  Lately I’ve become accustomed to side stepping it by taking baby steps in the long list of things I should be doing. I feel guilt looming nearby like a shadow in part due to the amazing yet overwhelming amount of advice I now have for Landon.

I have been reaching out to anyone with any expertise in the fields of what Landon faces for advice. Kindly I have received an amazing list of things to do for her, but it’s left me feeling like I am a slacker anytime I’m not working on developing her senses or anytime I relax rather than research.  Rare syndromes are just that…. rarely talked about, rarely understood, and there are rare bits of information on what to do when your child is an infant.  So I’ve turned to trusted friends.  Currently I am playing her talk radio loudly from my iPhone (must be a deep man’s voice so I’ve chosen NPR), I’ve bought sign language flash cards, bows for her future soft-bands that her hearing aid will attach to, and I’ve left 4 messages today trying to get the Clark School coordinator to call me back. Oh and b/c Bo was out of town this past weekend…..working with only the sleep from last night and what can be summed up as little naps from the past 3 days.

The chaos that my living room houses emerged from this quiet morning where I sat and watched some Today show and cradled her in peace.  Then the shadow of guilt appeared and I frantically started doing things. I feel like I have to talk to her all the time, or play music and listen to talk radio (a hearing related thing…), read to her, sing to her. Research…. everything. There is also the list of normal mom stuff like tummy time, is she breathing?! is she hot or is she cold? And breastfeeding is just plain hard. I’ve had to start supplementing- but which formula? Now she’s not gaining enough weight all the sudden and I need to add rice cereal to her bottles.  The list… goes on.  So I find 30 minutes between feedings and sit here in silence to rest and there it is again….. the creeping thought that I can’t rest.  How can you not be doing anything? She’s awake- do something for her!  

Don’t get me wrong, I don’t want the advice to stop. It’s just that I worry that I’m not doing enough.  I worry that all the time. 

Why do women let this happen? I don’t see Bo fretting that when he sits with her he’s not doing enough? Women have this extra gene I think.  As if Landon is going to grow up and say that we didn’t do enough activities when she was 1 month old. 

I have to keep saying this out loud- all I can do is my best each day. Great, now I’m that girl that talks to herself. Guilt can really consume you if you let it. I think it must be really easy as a mom to feel guilty- when you do anything for yourself for instance.  I look at my little girl’s teeny face though and I know that I am her mother for a reason. She knows that I love her and somehow I think she knows I’m doing my best. I need to feel confident that I am built of the stuff it’ll take to be there for her in every way.  All the research and information I need to guide her… it’ll come.

We all need to find ways not to let guilt get us down. Take baby steps in our day to avoid it. Stay focused on one thing at a time…. and be kind to ourselves.  I plan to be kind to myself tonight and watch The Voice while she’s in her little chair and enjoy some peace. 

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xoxo

eloise

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A Birthday

Today I am 32. Wait, what? When did that happen? I was reminiscing with Bo yesterday about what birthdays looked like in my 20’s and how big of a deal our parties used to be for my friends and I. Renting out a bar, a new outfit for sure and then scanning that evite constantly to see who was coming. My how things have changed.  I’m snuggled on the couch early this morning with my new little bundle and the dog is fast asleep next to me. All I want today for myself is to find a new sense of peace and calm in my mind.  I’m determined to resurrect that strength I know I have and others keep telling me exists.

Yesterday after Landon’s tests, I just lost it.  I sobbed several different times. One of those emptying cries that left makeup all over my poor husband’s shirt as he just held me and said “let it out."  I gave myself yesterday afternoon for that. I hadn’t really let anything really go since her birth. There have been tears, of course- baby blues are real after all.  But I had not released all the things I’ve felt as I always catch myself and stuff everything back in.  I felt guilty crying for her- like maybe she’d notice that I was crying for her and get upset herself.  Sounds insane I know- she’s three weeks old. So that was my day and I’m glad I let it happen.  We need to all let go sometimes. Just to feel whatever it is that’s going on with us.  We can then get up "off the mat” and start to feel better, start to feel stronger and face tomorrow. 

So here’s the story… Landon has both conductive and sensory neural hearing loss.  It’s called “mixed hearing loss” and is common with kids with Treacher Collins. Part of what made me so sad is that the hearing/speech treatments or issues she’ll face is only one part of this journey. We still have to analyze the bones in her face. She’ll certainly have a hearing aid for some time and surgery to make her new little ears happens when she’s at least 6.  Any implant comes when she’s about 9.  For the hearing aid they keep saying “you can get different style headbands”- well we love accessories don’t we?  I was never into those girlie headbands for Landon- love them for others but they weren’t my thing. I remember when I first heard of this Bo made a cute little joke with me about attaching humongous bows or flowers to the front just like I’d wanted to avoid. God, I love that man- he keeps me sane and smiling.  And honestly to me … she is perfect and beautiful in every way.

The audiologist will send me a full report today so I don’t want to go into details simply b/c I don’t have them yet.  Thank you for all of you who sent me emails and notes and texts. Your prayers for strength were so comforting and I felt them while we were at the doctor. Little ladybug slept peacefully and we got exactly the reading we needed for the test.

So today, on my birthday, I plan to celebrate being her and Kingsley’s mom and Bo’s wife.  I love them so much my heart feels like it could burst. My sweet husband gave me something sparkly to stare at all day too.  He is more than I could ever ask for in a partner in this journey. I adore him.

Check back for more updates as I get them.  Until then, enjoy your weekends!

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xoxo,

eloise

Eloise ThomeLeave a comment

Being present

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This Thursday is our audiology appointment. Little Landon luckily will just be asleep for this test which can take 2.5 to 3 hours. Not quite sure how it’ll go- what if I can’t quiet her down? What if she doesn’t sleep for that window of time?! She is a newborn after all.

As I sit here and read all I can about hearing aids and what this ABR test can tell us, I have to keep saying to myself- this isn’t life threatening Eloise. She is growing and healthy and a normal baby. I know all of this – and I hear it constantly from others. What pulls me down is just any thought of her pain. Any thought of her struggling to hear; any struggle she may face to speak; any problem she may have with her little cheekbones; and the surgeries… they scare me most. Yes they are advanced medical techniques that have been perfected, they are amazing doctors and these surgeries are far off in the future. But I’m a planner. I plan for things all day long and always have. Staying in my present has always been tough for me.

So that’s my goal – each day- to be present in the moment. To be present when she holds her head on her own for those moments that feel like the longest stretch of time. To be present when I gave her her bath today and she stared up at me the whole time with those huge blue eyes. To enjoy living in the moment of sitting on a bench with her and Kingsley in Central Park watching little kids play softball. My present is truly grand and I’m going to love her as best I can.

Here’s to all of us being present in our lives.

Xoxo

Eloise

Eloise ThomeLeave a comment

Baby Girl Southard

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Most of you that follow this little blog know by now- two weeks ago today we had a little baby girl.  Her name is Landon Glover Southard and she has filled this house with so much joy and delight.  When parents said in the past they didn’t know they could love something instantly and so much… I never understood it until now.  My love for her is so huge that honestly it brings tears to my eyes. I know that I’d do anything to protect her, nurture her and keep her happy. 

I had a pretty scary delivery and I’ll save that story for those that really want to know b/c it’s not a fun labor story. The good news is that I’m finally on the mend and baby girl is healthy.  She did spend 6 days in the NICU though where angels are the nurses and we briefly met some incredible parents whose babies have been in there for months on end. Those parents deserve medals- I could barely survive 6 days wheeling down there in my wheelchair.

Landon was born with what they think might be a mild case of Treacher Collins Syndrome.  What I’ve come to understand is just how mild I think her case really is compared to what I find online when I google it (btw….don’t ever google anything they tell you that your child has… it’s traumatic). TCS typically has several physical features associated with it- spanning from malformed ears, low cheekbones and even a cleft palette.  Once she got to the nursery- specialists from ENT, Audiology, Genetics, Speech Therapy, Ophthalmology and Pediatrics came to visit the little bug. This syndrome is RARE.   It does not have any impact on cognitive function or ability.  Thank God.

What we know is that she has little “peanut ears” (they are so cute) – one might have a hearing canal and we know that one does not. We have ENT and Audiology working together and we’ll have a test next Thursday to determine her hearing. So mom will be a wreck.  She’ll most likely have to wear a hearing aid, but when she’s older they can do reconstructive surgery to make her ears.  What’s incredible is how healthy she is otherwise- eating a ton (hello growth spurt) and sleeps pretty well throughout the day and night. She is precious – huge blue eyes and a pouty little mouth.  She may face other surgeries- possibly on her cheek bones and her poor deviated septum.  Those two things we have to face in the future once she’s bigger and we see how things have progressed. 

Little bug is 6 lb 11oz now and is so teeny. She is a long string bean too- not surprising considering the height in our family.  Kingsley loves her too after a few days of adjustment. Man that was a rough first day for him. He now runs to her crib or little chair when she cries, kisses her on the head and feet and lays in my lap whenever I hold her.  Sweet dog.

Alas, our journey with her has just begun in so many ways. What has been a very tough start to life seems to now be worlds away as she continues to get stronger and thrive at home. Bo became the most protective and loving father instantly. He is taking incredible care of me as I’ve been laid up for the past two weeks as well as calming me throughout the day when hormones/fear/speculation consume me. This man who I thought I knew everything about amazes me daily.

So that’s our little story…for now. Check back for updates!

xoxo

eloise

Eloise Thome1 Comment