Tiny’s Diagnosis

So way back in December I mentioned rather cryptically that I was dealing with some personal issues that were difficult for me to process. Many of you know I have a little 21 month old daughter who has had lots and lots of health problems, and up until December, was undiagnosed. I blogged about our life with a special needs child over at Miggy’s back in October, and it was because of that post that we finally got some answers.  It’s strange how things happen, and so humbling how things line up for just the right chain of events to occur.

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Back in December I received an incredibly sweet email from a girl named Erin who just wrote to say that she enjoyed my blog and felt a connection with me because she too had a special needs baby and understood all the stress and heartache and blessings that go with that challenge.  I’m always so touched when people take the time to reach out and say something kind, it means so much to me. Anyway, in the email she mentioned a picture that I had taken of Tiny and Twinkle, and reading her talk about it made me want to look at it again, as it’s one of my favorites as well. I know that it’s somewhere on my blog, and somewhere on my computer, but as strange as it sounds, at the time I felt like the quickest way for me to look at it was to skip on over to Miggy’s and look at Tiny’s special needs spotlight because I knew it was there. So you know how these things go, one thing leads to another; I reread the whole post, and then noticed that a few people had commented.  The last comment of the post, made by Elliesee, asked if Cornelia de Lange syndrome was a possibility for Tiny, and she mentioned that her sister had it. Now I have to say I’ve received lots of diagnostic tips and leads from well-meaning people, but I had stopped googling the various “diagnosis” because it tended to be overwhelming and not-helpful. But for some reason I looked it up, and immediately I was stunned by a physical resemblance of the children I saw that looks almost familial to my little girly. I read the diagnostic checklist and knew that this had to be it, she qualified for too many of the criteria for it to be a coincidence. And also there were things on the checklist that I hadn’t even considered to be part of her diagnosis (like her lacy-looking skin, tiny hands, and head of hair), and yet there it was listed as part of this syndrome.  So long story short, after lots of research, I quickly became convinced that we had found Tiny’s diagnosis, and as of last week we were finally able to meet with our geneticist who was able to confirm our belief, although he still wants to try and get approved to the do the (very expensive) genetic testing (I have mixed feelings about that).

All of December I felt like I was in a haze, and struggled deeply with all the implications of this syndrome and what it will mean for her future.  I was absolutely heartbroken, and grieved (all over again) for all the things that my precious daughter would likely not be able to experience.  Up until that point I had suspected those fears, but it wasn’t until then that I had to give up the hope that my daughter would ever grow out of the challenges that she was born with, as I deep down had hoped for. I was devastated that she would likely not be able to experience the very things that have brought me the most happiness in my life.  I will pause to say that we think Tiny has a mild version of the syndrome, and we really don’t know exactly how profoundly this will affect her life. At this point we’re going off of her current delays and what we know about the syndrome.  I’m certainly not ruling out any possible accomplishments, but rather am trying to be honest and realistic about all the possibilities that her CdLS and disabilities present.

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Since then I’ve come a long way, and now feel very much at peace with all these possibilities. There are still moments here and there that my heart breaks a little as new idea dawns on me, but for the most part, I have faith and peace that Tiny will live a full and happy life, and that she always have the love and support of a family who adores her.  It will undoubtedly be different than I had planned or would have wanted, but this is her life, and it will nonetheless be full and happy. She is a bright, sparkling little star, and I know she’ll take it all on with bravery, spunk, and detirmination–all qualities she’s demonstrated in abundance thus far. She is one the greatest blessings of my life, and there’s not a day that goes by that I don’t feel like the luckiest mom in the world just to have her blazing spirit in my life. She is my star.

I’ll also add to this the fact that once I came to terms with this, it all felt in some way familiar to me. I had always thought I might have a special needs child (something I vocalized to my sister nearly 10 years ago) because I felt a sort of connection with them that I can only describe as an intense compassion, love and yearning. When I was finally able to see Tiny’s situation with clarity it felt very right to me, and like I said, almost familiar, like something I knew was coming to me. I also feel for Tiny a sort of companionship (more so almost than a mother-daughter relationship), and that we were meant for each other. I won’t try and tell you what that means, only that these are the feelings that my life’s beliefs and experiences have interpreted, and they have brought me an enormous amount of comfort.

Developmentally at 21 months, Tiny has come about a million miles in the last two months. She is almost walking, eating orally (!!!!! We only supplement now through her G-tube), and is very exploratory and curious.  And although she isn’t talking at all, I feel she is understanding more and more signs and words, and has signed More, Milk, and All Done a handful of times. I am so proud of that little woman.

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So that’s where we are!  A couple of weeks ago she had an echo cardiogram and they think that she has a aberrant right subclavian artery that is causing a vascular ring around her trachea and esophagus . They think this could very well be why she aspirates! So anyway this week we have an MRI to confirm that finding, and if they do then she will have surgery sometime soon after that.  Of course heart surgery isn’t something you ask for, but if this could help her, then it would be amazing.

For those of you still reading, thanks for sticking with me on a long and personal post, I don’t open up very often about our personal life, but when I do I am always so touched by the kindness and caring that I am met with. Thank you!  And if you’re out there Elliesee, and you ever find this, can I say thank you from the bottom of my heart for bravely making that comment and  helping our family find some desperately sought for answers. You were an answer to our prayers that day, and you’ll never know how much it has meant to us!

92 Comments

Mary

Tiny is a beauty and clearly well-loved. May you and Tiny continue to find the strength and courage to meet the challenges ahead, but may you also revel in the gifts Tiny brings to your family. Blessings.

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Miriam

I will! t’s been a hard 21 months, but there has been such much joy as well. Our experiences with her have definitely deepened my capacity to love and be happy, I’m very blessed. Thanks for you sweet comment!

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Trisha F

Children like Tiny see the world through special eyes. You have been given the blessing of a child who will always be innocent and full of the joy of life. Treasure her, for she is indeed a treasure beyond compare in your life. If you allow her, she will teach you how to view life through uncluttered eyes, how to find joy in the moment, and how to love unconditionally without expectation or demands. Teach her about God and she will believe without question, something many of us with so-called “normal” intellectual capacity cannot do.
Thank you for sharing this story.

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Miriam

Oh you’re so right, we’ve already learned so much from her, I feel like a different person! She is truly a gift, and I know she’ll teach me so much more. xo

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sarah

i am always surprised when bloggers write personal posts and say they hope their readers understand and aren’t bored. i hope you’ve never had negative feedback for writing something so personal and touching! on your blog no less! you feeling like you would have a special needs child and then you actually give birth to one is nothing short of divine. how fortunate that she has such a family around her. you’re attitude is inspiring and i pray that you find answers and some solutions through the coming MRI!

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Miriam

You know, it was actually a friend of mine who told me that she dreaded when bloggers all of the sudden got super personal. I know that most people don’t feel that way (I certainly don’t!), but I’ve been a little sensitive that people are uncomfortable when I switch gears on them, especially because most of the time I tend to stay away from my personal life. Thanks for making such a sweet comment, it definitely helps me feel less vulnerable about putting our life out there!

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carolyn

I am amazed at how the world works sometimes and am so thankful that you were able to find some answers (even though it led grieving once again). She really is such a precious little thing and so lucky to have such a wonderful family. Here’s to hoping that her health continues to improve! And thank you so much for sharing this!

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Jessica

Wow, Miriam, reading this is making me cry just at the beauty of your relationship with your girlie. I love the fact that blogging about it actually led to answers for your family. She is so adorable and HAPPY. It’s obviously true that you and her were meant for each other. Thanks for sharing this!

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Miriam

Dude, she is the happiest little girl alive, she’s really the life of the party. I am amazed at how it all came about as well, I’m so grateful to learn what we’ve learned. You know, it’s always hard for me to get personal on the blog, but all the connections and support that I’ve found out there have meant so much…xo Thanks Jessica:)

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Aubrey

Thank you for sharing your experience. It helps me so much as a professional when parents open up and share their personal experiences.

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Miriam

Thanks Aubrey, it really is difficult for me, even though most people are so kind, it can be hard for me to open up. I really appreciate your comment.

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Amy

I agree with this post! I am a Speech/Language Pathologist and personal information like this from parents also helps me professionally when I work with parents. It helps me understand how they could be feeling. Also, I am guessing she may already be seeing an early interventionist but thought I would mention augmentative communication devices as something to look into. She could begin communicating verbally via a speech generating device.

Thanks again for opening up to a world of strangers! You have no idea how many lives you are touching through your personal story.

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Miriam

Wow, thank you so much for your comment. I am SO GRATEFUL for the help of Tiny’s speech/language pathologist as well as OT and hearing specialist. They have helped me and her so much, I can’t even express it. So what you do is SO important, you guys are seriously like angels to families like mine.
I will definitely ask our speech pathologist about augmentative communication devices next time she comes!
Thanks again for you sweet comment xo

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Linnae Williams

I thank you for your posts. We love your family and I have been wondering how Tiny is doing. We miss you. I know Holly misses you! We love you and know you will be an amazing mom to all your little ones.

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Miranda

What a sweetheart. I’m so happy that your appointment confirmed your diagnosis suspicion and helped calm some questions. Tiny is the lovliest little girl, and your family is so blessed to have her! I love hearing about her recent developments (walking?! eating?!!) and can’t wait to see her again sometime soon!

You are such a wonderful example of a faithful and loving mother.

xoxo

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Miriam

Yes, it’s been wonderful because I’ve been able to get into contact with other CdLS families, which has been so cool for me! xo

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Marseille

I’m glad she’s made such great strides. I love how eloquently you put your thoughts on paper….errrr…you know what I mean.

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Miriam

Yes, it’s hard to even communicate how much her strides have meant to us, it’s been slow going, but the little milestones are wonderful!

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Katie

Such a beautiful post–hugs to you and Tiny and the rest of your family. Now let me wipe the tears from my eye.

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Delia

I want to hug you so tight right now. It was such a pleasure to meet you in January and hear you tell your story first hand. You have a deep, wise, warmth about you. Your daughter is such a beautiful light. I adore you and your family!

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Miriam

Delia I absolutely loved meeting you too, you’re just as genuine and kind in person as you are online, which is really remarkable. Our little post-lunch convo really meant a lot to me that day! Thanks so much for you sweet comment!

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Edwina

Hi there,
I’ve been reading your blog for a while but had missed the post about your beautiful daughter.
I have a friend who has a daughter with CdLS and she wrote a book called “Ella” (who is now 18!). If you’re interested, it is a beautiful, honest read. Otherwise, here’s an interview with Madeleine.
http://www.abc.net.au/local/stories/2008/04/22/2224305.htm

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Edwina

Forgot to mention, we live in Australia.
If you can’t find the book “Ella” in the US, you might be able to find it on Australian book sites. Author’s name is Madeleine Witham. Hope you can grab a copy 🙂

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jen

Hi lovely mim, let me know if you need someone locally to find/send you the book and i will go seek for you. I will send you an email separatly, but in the mean time, lots of fat squishy cuddles xxxx

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Miriam

Thanks so much Jen, I’ll let you know if I can track it down. Hope you and your sweet family are doing well! xo

brooke

you are a brave and loving mama! your family is meant to be. she is a darling girl!
all the best with the m.r.i

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Kieran

Thanks so much for sharing! It’s so good to know that having a special needs child is a blessing, and not something to be fearful about. Thank you for emphasising that to us!

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Miriam

Wow, more than I could have ever imagined, her presence in our family is so amazing, we are so unbelievably lucky to have her.

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Marci Milus

You and your family will be in my prayers going forward! She looks like a very precious little girl and I pray that the doctors will be able to help her. God bless, Marci

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Yam b fan

You can just feel that poppin’ spirit of Tiny’s sending power rays straight to Heaven! I love those pix, You can see Twinkle’s love for Tiny, too–these pix would warm the cockles of the coldest heart.. It is obvious that you are all growing into even deeper and more amazing people than you were in the first place–which was pretty rockin’ amazing to start with! Thank you for sharing. You help us in la-la–I mean reader land, to grow into deeper people just watching your story unfold. And p.s. so cute to boot!

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Kristi

Wow Miriam, it’s really nice to know the latest update with your family, and I don’t mean that in a gossipy kind of a way. Thanks for opening up and giving the world some insights to your family’s life. She is so sweet and I love those pictures of her Josie – seriously what would we all do without family to surround us and love us? As you already know, I admire you so much. Thanks for blessing others’ lives through your candidness and your many talents! I hope the upcoming MRI yields the answers and information you need.

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Miriam

Thanks sweet Kristi, it’s true–I can’t even imagine my life without my dear ones, they are everything! xo

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Lisa D.

Mim, I am so glad you found some answers! It never ceases to amaze me how our Heavenly Father answers prayers. What a special angel you have! She is beautiful and so are your other kids! I wish you the very best with the upcoming tests and surgeries. I don’t know if you know what is going on in Angelique’s life right now, but you are both such amazing examples of faith. I am grateful to know you! Xoxo, Lisa

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Miriam

Thank you so much, Lisa. I definitely don’t feel amazing in any way, but all the kind words really mean a lot. And so! I don’t know anything about Angelique! Does she have a blog or something that I can catch up with?

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Miggy

Mim,

Still amazed about how this all came about. I’ll be doing a post about you and this miraculous connection this Thurs (if all goes according to plan) and hopefully we can find Elliesee. 🙂 Much love and hugs to your sweet family.

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Martha

Those pictures of her are to die for! She really has come so far. I’m so happy to hear you are getting more answers and understanding. Love you!

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kristin

Aw Miriam this post was so touching. I truly admire your relationship with Tiny and your positive outlook in general. I know for me the hardest part about something like this would be the NOT knowing, not having a diagnosis so you don’t exactly know how to proceed. Don’t you wish you had a crystal ball sometimes? Would make knowing how to deal with the “now” much easier, I think. Anyway, love and hugs to you and thanks for sharing. Take care.

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Miriam

Kristin, you are such a kind person, I’m so glad that we are blogging friends now! Thank you so much for your sweet comment!

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Lisa D.

Hey Mim, I lost your email address when I got hacked a year ago so could you email me and I will send you Angelique’s blog info. Thanks!

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Stephanie Sorensen

Thanks for an incredible peak into your heart and home. I’m really growing to be more and more in love with you the longer I know you…and that says a lot coming from a life-long friend…well, at least a life-long admirer. I hope we have safely achieved “friend” status by now. But really, thanks for your beautiful post.

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Miriam

Good friends, Steph, of course! I think that’s why I love book club so much is getting to really talk and dig deep with you and our other amazing friends. You are are so wonderful. Thanks for you kind words, they always bolster me up!
xo

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Kim Weinreb

Thanks for sharing your story and your feelings about being mom to your sweet little girl. I saw your post on Miggy’s blog. We were spotlighted last Friday and after 14 years of special needs parenting, those feelings are still alive and well. We all do our best and that’s exactly what you are doing. Hope all goes well with the surgery and testing.

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hopefulmother

Just wanted to mention another blogger who has a child with CdlS. Lisa Leonard from Lisa Leonard Designs – in case you are looking for another parent to connect with. Best wishes!

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Miriam

Thank you so much for making the connection, I just went over to her blog and really loved learning about her sweet David. It does my heart good to see how happy and “normal” their life is. Thanks so much for directing me her way!

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corinthians13rr

I loved this post, especially the fact that you love your little girl so, so much. I believe with all of my heart that a person’s ability to have joy has so little to do with outside circumstances, and so much to do with whether they have truly loved and been taught to love. Whatever her challenges, I believe your daughter will grow to be a beautiful, joyful girl and woman.

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julie

thank you so much for sharing!
I can’t imagine what your going through as a family!!
So great to finally know what your up against though. Must be a relief.
You guys are in our prayers!!!

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Emily

Mim, that is shared really beautifully and I am so thankful for all that your story is. A tale of how our Lord prepares us for everything in store, and joyfully brings miracles down to minute details in doing so. I am so thankful to that my children continued to say “Please Help (Tiny) to be able to Swallow.” there was a point where I almost counseled the children to stop praying for that….but it touched me that they always prayed for it….I must tell them they had a part in a miracle for her.

I wanted to ask about the adorable skirt in your picture below. Does it have a story? Where did you find it or is it made? The golden yellow belt and scarf are so pretty and you.

Lastly, Twinkle’s dress is so much fun, designed by her and all. The stamp is just way too cute, it screams her cousin with a unicorn love, as well. It must have been so bonding to do that with her and the dress and shirt under are so cute.

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Miriam

Em, we will always be so grateful for all the sweet prayers offered up for Tiny, there were so many times when I felt them. Bless you and your sweet kid’s hearts!

The skirt is a polyester “jean” skirt that I got in 8th grade I think, at the Vernal DI. It is tough as nails, and a nice length, and is probably my most worn skirt over the last 10+ years!

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Karey

Loved reading your post, as I too have a daughter diagnosed with CdLS this fall. I felt so much of what you did, but finally getting a diagnosis and a path for our family gave me such peace. Best wishes for the future of your daughter, and maybe we will cross paths again 🙂

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Miriam

REAlly?!?! How old is your daughter!? How amazing, I felt so lonely in the beginning, feeling overwhelmed that she had such a rare syndrome, and now I’m feeling more and more like there are so many other families out there like mine, going through the same things, and who can relate to what we’ve been through. Thanks so much for commenting, it’s one more connection. I hope we do meet someday, we’re hoping to go the convention next year, are you??

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Andrea

Oh, what a beautiful thing to feel such a connection. I’m so glad you have an answer and are no longer lingering in the unknown. I can only imagine how that feels. Thank you so much for sharing your experience and your emotions.

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Corinnea

What a lovely little girl she is. It seems to me she has a lovely life ahead of her with a mom like you! Thank you for sharing.

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Elliesee

Wow, you certainly made my heart pound, I am not used to read about myself on the Internet:) I am glad you took my comment well and that it made a positive difference for you. I have 4 students with CdL (1 not officially diagnosed) and I smile non-stop when I am with them. They are good at hiding abilities!

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Miriam

Elliesee!! I’m so glad you found me and this post, the internet is amazing sometimes!! Again, and from the bottom of my heart, THANK YOU for turning us in the right direction, it has helped our family get so many answers, find a community, and feel so much peace about her future. You’re comment really made a huge difference in our life!
I’m so interested as well, you mentioned you had a sister with CdLS, and now 4 students with CdLS, what do you teach? Did your sister have anything to do with your profession? Anyway, thank you so much!!

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Erin

This makes me sad and happy. It makes me sad that you had to grieve all over again in December…and that I helped bring that to your doorstep. It makes me happy that this has led to some answers and peace. The feelings of connection you feel to Tiny, that you were meant to be her mother, the mother of a special-needs baby (that you knew 10 years ago!) gives me chills–the good kind. This post leaves me feeling grateful and connected and abashed and kind of speechless. The weaving of lives just blows my mind. Please keep us updated! I would love to keep Tiny in my prayers when/if you know she’ll have surgery, etc. Thank you for sharing such difficult and close things…it takes courage to open your heart to strangers.

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Miriam

Yes, Im constantly touched by the connections and meant-to-be interactions we have with each other. Em said that you were going over to her house the other night, i was so excited that she was able to meet you! I will keep you updated, we had to post pone her MRI due to sickness, so we’ll find out next month if she needs surgery. Thank you for you kind words and heart:) xo

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Kate

I started reading your blog right around when Tiny was born and trying to find answers. I dropped off after awhile, but came back (in search of the awesome t-shirt pattern!) and had to catch up on Tiny’s situation. While finding the diagnosis is probably both hopeful and disappointing, I must say both of your daughters are insanely adorable. I wish all the best of your family!

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deborah kaye

Hi Miriam: I linked to you from flickr today because I liked your work. Read your story and am full of awe, admiration and love for you and your family even though I know you only through this crazy online community of sewers and crafters. I wish you and Tiny all the best – she is an angel and so are you – thank you so much for sharing your story. deborah k.

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Miriam

Deborah, thank you so much for you comment, it really made my day. Thanks for taking the time to say a few kind words, it really means so much.

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Christina in Clevela

Dear Miriam,
To me, you and Tina are like beloveds who have found each other across time and space.
Ten years ago you knew she was coming, always felt a special bond and now she is here. The connection is complete and I am so completely overjoyed for you both.
How Blessed Tiny is to have such a compassionate and loving mother, as well as a fantastic sister.
I can appreciate your mixed emotions, heartache, struggle, love, delights, concerns all mixed together.
By the way, I found you traveling from a link on the BabyLock email I received featuring your basket weave pattern pillow.
Only the very best to you all,
Christina in Cleveland

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Miriam

Thank you Christina, that’s really how I feel too! She’s such a star in my life, I feel lucky every day!

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Mae

My heart goes out to you and your family. I have worked with special needs students throughout the years as a teachers assistant and I can understand your pain and fear when trying to project a future for your child. She is beautiful and so lucky to have a mother& family who accept her in her best and worst. Many typical children don’t live with this amazing love& in reading this I can’t help but think ALL of your children are lucky to have such a caring family to be a part of. Good luck to you& your little. She has a big journey ahead, though with your help it will be so wonderful.

Mae

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Miriam

Thank you Mae, for you sweet thoughts. I’m constantly uplifted by the hopeful thoughts of people like you, and it helps me to be more positive and patient! Thank you!

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Meg

Miriam! First of all, you are one seriously talented lady!! Thanks for sharing your blog with me today at the playground:) I am amazed at your abilities and your style!! I am loving looking around your blog- I’ve always said that in a different season of my life I want to learn to sew better than a straight line:) You are amazing!
Secondly, I love this post about your sweet daughter and the challenges your family has faced. . . I can relate to some of this big time! Benson and his little sister both have a genetic eye condition that is super rare (we know of one other girl in Utah with the same thing) and especially because Benson was my first child and we hadn’t dealt with this before, we couldn’t figure out what was wrong, and neither could his pediatrician. He never made eye contact with me as an infant, and this same condition causes gross motor and speech delays. SO. .. we have also done the occupational and speech therapy thing- I guess for years now! Also, because it’s such a rare condition, we just didn’t know have any idea what kind of prognosis he would have. Benson started walking at 26 months, and while I could go on and on, please know that this is one more reason why it’s meant so much to me when he comes home and talks about how much he likes YOUR oldest. I’ve been so worried about him making friends and about people being kind to him in school since he moves his head differently than others in order to get his eyes where he wants them to be. I love that YOUR daughter is so kind and loving and always has been. I know our situations are different, but please know that I know a TINY bit of what you’ve gone through, especially in the “not-knowing” stage. During that stage in our journey- five years ago when I didn’t know if he would ever walk or talk nor did the doctors- I was mourning what might not be, and my husband pointed out wisely how, no matter what, we would love him like crazy.No matter what happened, our job was to love him, and he has made that part of it all really ease:) It sounds like you’ve already figured that whole idea out big time, and I admire you for it. Have you heard of the poem “Welcome to Holland”? (Google it if not:) It brought me a lot of peace in the beginning of our journey, and it still does. All about how you plan and prepare for a trip to Italy and study about it and learn about it and make plans, and in the middle of the trip the pilot unexpectedly announces that you are actually landing in Holland. Point: Holland may have been unplanned for and unexpected, but Holland is still beautiful. Maybe even more:)

Well there you go! I have now said WAY too much on your awesome blog!:) Thanks for what you do, but also what you share! You are one amazing mom:)

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Miriam

Meg THANK YOU for taking the time to write such a sweet, kind comment. I know just what poem you’re talking about it, it has brought me an enormous amount of comfort as well. Whoever wrote it blessed the lives of thousands of us who have had special journeys with our children, and unexpected challenges/blessings. I wish I could tell you how much I love your little Benson and am so grateful for his friendship with my girly. I’ve always thought he had such a happy, energetic way about him, and frequently told J what a cutie I thought he was. For months I was so worried about J not making any friends, and then I remember one day I came to pick her up and she and Benson were laughing and being silly, and my heart just burst because I knew she had found a friend! And also I need to thank you! I really haven’t gotten to know any of the other moms, but I always appreciated your friendly smiles and waves, they meant a lot. My only regret is that we didn’t have Benson over for a playdate (something J has asked about several times), and now we’re moving! Thanks again for taking the time to write this, it really made my day.

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Meg

OH! I’m excited for you that you’re moving- assuming you’re happy about that:)- but SO sad too! I was so happy to think of J and Benson being in first grade next year! Benson and I have talked about having a playdate with J too!! Dang it!! I always wait on stuff like this until it’s too late, it seems! Maybe sometime before you move we can get together or something- especially after reading more of your blog and seeing that you love natural childbirth!! I would love to hear your take on it all- I just experienced my first unmedicated birth and thought it was such a sacred experience!! It’s my favorite subject these days:) Anyway, it’s fun to connect- finally!! I’ve thought for months that I should talk to you about your sewing (one more thing I put off:) and I’m glad to have gotten to know you a little better, even if its at the end of the school year!

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Miriam

We are excited to move (we really really need more space), but I really really am sad that Benson and J won’t get to be in 1st grade together. J and I would LOVE to get together in the next couple of weeks–the park would be perfect! And natural childbirth talk is one of my favorite things in the world, so buckle up! Email me and we’ll set up a time! miriam@madmim.com

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Caila

Mirium, I know I’m late to the party, but I just read your post with tears in my eyes. You are such an awe-inspiring woman! Thank you for opening up and sharing so honestly with us. Tiny is such a beautiful little girl. I smile every time I look at those pictures of her. And girl, I was so impressed by you this past weekend. It was such an honor to spend time with you and experience your strong, kind spirit first hand. Truly. You’re a blessing!

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Miriam

Caila, I absolutely loved getting to know you as well–you have such a lovely, kind, magnetic personality. I seriously had so much fun getting to know you and everything this weekend, it really was unforgettable. Thank you for taking the time to make this sweet comment, it means a lot. So glad to have a new blogging friend!

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guest

Please look into endocrinology regarding iodine deficiency to regulate hormone and metabolic function for your daughter and your whole family. When a diagnosis is “syndrome” it is code for UNKNOWN origin and treatment. Don’t stop seeking a solution and don’t believe everything you are told by the allopathic medical industry. The news is rife with healing taking place outside of mainstream medicine. Seek out natural/alternative healing methods, avoid vaccination, and seek the Creator’s intervention.
Blessings.

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Miriam

I definitely agree that you can’t believe everything they tell you at the Dr, and have learned to be my daughter’s best advocate! Thank you for the tip, I’m always interested in more natural ways to address problems, I will definitely look into this, thank you!

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LeAnne B

Hey friend! Hugs to you and your sweet family. Know this post was ages ago, but you amaze me. What a sweet girl you have and what an unfolding of events that led to her diagnosis. God is in the details of our lives! Thank you for being an example to me of being the best mom that our sweet babies need. What a sweet blessing she is to you and your family. 🙂

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Other Bridget

Hi – you don’t know me, but someone I don’t know who reads my blog sent me a link to this post. I am so glad she did! My older brother has CdLS but I have never met anyone else with CdLS or even read a personal story (like this post) about CdLS. Thank you for writing this post and I wish you luck on your journey. In case you are interested, my mom wrote a post on my blog about raising a son (my brother) with CdLS: http://myadventuresintucson.blogspot.ae/2011/11/raising-daniel.html. She had trouble getting a diagnosis, too. Parts of your post reminded me very much of hers. Take care.

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Miriam

Thank you so much for commenting! I love connecting with other people who I can relate to about that aspect of my life, it makes the world seem small and caring. I just read you and your mom’s post about being in a family with a special need’s sibling/son, and wow, it really pulled at my heart strings. Life with Tiny is already our normal, and I very rarely think about or compare myself to other families. But when I read about someone who did it before me (with about a million more obstacles than me), it’s really humbling and emotional. This also comes at a time when I’ve been contemplating having another child, and wondering how in the world that will affect my relationship with her, and what kind of life a younger sibling would have. Thanks for reaching out, it really has given me a lot to think about. Xo

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Elisabeth

I know this post is a couple years old but I just stumbled on it…I have a brother with autism as well as 2 sisters who don’t. I just want to say it sounds like you are doing all the right stuff! Having a sib with disabilities can for sure have it’s hard moments but it is also just part of life. My brother is 35 now (lol how did we get so old?!) but he is one amazing dude. And I think having a bunch of sibs makes life so much more fun in the longrun. Anyway, I am really loving your blog projects as well but thought I would say hi five and looks like you guys are doing great!

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Miriam

Thank you Elisabeth! I’ve definitely been thinking a lot about what it will be like having a younger sibling to Tiny, but I’m excited to find out. I’m sure it will be challenging but I think it will be a blessing for our family!I love to hear happy stories!

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