Hello! I’m Miriam, and I’m the wife of a handsome nerd, and the mother of three remarkable little kiddos, the youngest being a sparkly little 15 month-year-old daughter who has a growing list of physical challenges (history of cleft palate and laryngomalacia, aspiration, dysphagia, tube fed, extreme reflux, partial deafness, developmental delays), and who is, as of yet, undiagnosed. We’re working with a geneticist who thinks that her little package of physical problems are part of a syndrome, but we’re playing the “wait and see” game to try and figure out which one, and how severe her handicaps will be. We feel so blessed with the progress that she’s made, but also know the heartache of the unknown and disappointed hopes. The first time I stumbled here onto Miggy’s special need spotlights, I remembered feeling this flood of comfort, hope and inspiration. I am so honored to take part in the series, and share our little story! I blog over at madmim.com about my prolific creative (mostly sewing) endeavors.
Miggy: Miriam, your daughter Harper (love that name!) has several challenges but no set diagnosis, can you take me back to the day you knew things with Harper weren't quite "right?" Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Miriam: For me it was a completely uneventful moment that stands out in my mind as the first time I truly considered that Harper might have a different future than I had planned. It was when she was maybe 8 or 9 months, and besides her health issues, we were still thinking that her challenges would be short-lived and it was just a matter of getting through the first few years. I was running around doing something for my other kids, and Harper was fussing in her play saucer. I came over and held out my arms and said do you want Mama to hold you? and all of a sudden my heart just sank to the floor when I realized that she had no idea what those words or gesture meant. She saw me and was obviously sad and wanted to be picked up, but there was no cognitive reception of my words or intent, or at least none that she showed. I was heart-broken. It wasn’t that in that moment all my hopes for her future were crushed, but rather it was the first of countless small moments of disappointment and heart-ache. Many months later, I still feel those feelings every time I feel she’s not connecting, understanding or improving. The difference now however, is that coupled with those difficult feelings, is a strong sense of rightness. I’ve come to feel a companionship with her that I can only describe as divine and enduring—I feel like we were meant for each other, and that I was born to be her mom. So I feel peace about my relationship with her as her mother, comforted by her strong and dazzling little spirit and confident that no matter her challenges, she’ll be loved and supported by an adoring family, and that she’ll have a full and happy life, regardless of her challenges.
Miggy: What are some of the biggest challenges you face having a daughter with special needs that fall under the "undiagnosed" category? What advice would you give to other families in a similar situation?
Miriam: What’s hard about not knowing her diagnoses, is not knowing her prognosis. It’s not knowing how to feel, what to prepare for—it’s the same reason that makes answering this question difficult. What do I say? What if I underestimate or overestimate her? Will she be hurt by that later? As much as I wish I could say that my mother-heart knows, I don’t. I have moments when I’m so hopeful and positive about her future development and the experiences she’ll be able to have, and then there’s other moments when all those hopes seem out of reach, and I have to mentally readjust my expectations. I think it’s this emotional back and forth that is so painful, and why not-knowing can be so hard. My advice to any one in a similar situation would be to cling to those precious feelings of comfort and peace that do come, and focus on them when you’re feeling tired or discouraged. Also, focus on what you can do—meet your child’s current needs to the best of your ability, and then try to mentally release all those heavy unknowns from your mind. And find yourself a hobby that you’re passionate about! Pure creative distraction is absolutely the sweetest form of therapy!
Miggy: Explain how Harpers specific special need affects your day-to-day life?
Miriam: Well, for starters, Harper is an absolute dream. She’s the happiest, most joyful, sparkliest little human, and she brings so much joy into our family. And things are now getting pretty interesting as she is becoming such an adept crawler! She is constantly getting tangled up in, dislodging, and pulling away from her feeding tube during feedings. Yikes! And then there’s all her medical gear that comes along with us! Whenever we go anywhere I have to pack like I’m moving across country. It’s really no big deal now—nothing more than an inconvenience, but it prevented me for nearly a year from hardly going anywhere! I just couldn’t face packing around all the stuff! And therapy—we are meeting three different therapists (speech pathology, occupational and hearing) for Harper, and they each give me list of things to work on with her. It’s overwhelming at times; sometimes I feel like that’s all I do, and other times I feel like I’m failing her and not doing enough. That pervading feeling of guilt is totally normal, right?? ;)
Miriam: I think even more than my fear that she won’t experience all the most joyful experiences like marriage and motherhood, I fear that she’ll know what she’s missing.
Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Miriam: There’s the always fun experience of losing her feeding through an open port. I can’t count how many times I’ve been on the phone, visiting with someone or in some public place and she crawls too far from the pump and her tube pulls apart and her entire lunch is lost all over the floor, usually in a gooey drawn-out trail. It’s gross, but a real gem of an ice-breaker.
Miggy: How can people best approach or respond to Harper or your family in general? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Miriam: In general people are fine. They are always curious about her feeding tube, and usually ask to see her tummy port. And then there’s the question that always comes up, usually phrased pretty timidly…is she…normal? Meaning specifically, are all her problems physical, or is she cognitively handicapped? I think just like me, people want to how to think about her, and that doesn’t bother me—don’t be afraid to ask! My husband I both really love talking about her. People are always very sympathetic when I talk about our situation (which I really do appreciate), but I always try to communicate how lucky we are to have Harpsy, and how fun it is to be her mom. I mean really, she’s our blazing, sparkly little Light, and if this is what it means to have a special needs child, then bring it on. Yes there have been many tough moments, and yes it can be hard, but just know that along with the difficult, we enjoy the perks of having a joyful and sacred spirit in our home, and that we love every moment.
Miggy: What is the biggest lesson you’ve learned since becoming Harper's mom?
Miriam: I’ve learned that you can never possibly know what kind of stuff others may be going through, and that kindness really is the only thing that matters. Be kind! Never suppress that generous thought!
I want to thank Miriam for this amazing spotlight. I really felt uplifted by so much of what she had to say. Personally, I loved her advice to "focus on the moments of peace that do come...meet your child’s current needs to the best of your ability, and then try to mentally release all those heavy unknowns from your mind." Well said. And seriously, another plug for Miriam's blog--especially if you're a sewing or wannabe sewing enthusiast. Thanks again Miriam--love that sweet Harper.
As always if you or someone you know would like to be a part of my special needs spotlight series email me or have them email me at thislittlemiggy dot gmail dot com. And please if you've already emailed me and haven't heard back I'm getting to you--I promise!
Have a great weekend!