You know things have been pretty busy if it’s been over two months since a blog update. (And that means you’re in for about a bajillion pictures.) I soaked up as much of my maternity leave with the girls as I could and that left little to no room for writing. Once I went back to work nearly four weeks ago, the thought of sitting down to write pretty much went out the window. I’ve journaled on and off for most of my life, starting as early as elementary school. Writing helps me think, process, revise, grow and learn. During hard times, writing is definitely a form of therapy too. After Lucie was born, it was an essential part of how Rob and I coped through the more painful days. I have been longing to get on here and post some thoughts about the recent months, but it has been a challenge. Not just because there has been little time, but also because it has been difficult to think about what to write.
The past 12 months have been full of adjustments: Adjusting to a new role at work and a new pregnancy at the same time. Adjusting to a very high risk pregnancy. Adjusting to being hospitalized, and Rob essentially becoming a single parent for five weeks. Adjusting to having a baby in the NICU — again. Adjusting to being HOME together as a family of four (my heart swells to think about that). Adjusting to caring for an outpatient infant, juggling several follow ups with specialists, ongoing medications, and serious health concerns. Adjusting to raising another premie, and constantly accounting for her adjusted age. And now, adjusting to me being back at work.
It feels like we’ve rolled from one set of trying circumstances to the next. Each time, requiring a recalibration and a reassessment of how we go about our day to day, requiring us to constantly shift into a “new normal”. It has been challenging, painful, and tiring. At the same time though, it has brought about a lot of growth for us internally. We are not the people we were a year ago, we are not the family we were. We have changed, deep down, in our habits and personalities, we have grown closer to each other and closer to the Lord. I am truly thankful for all of this, and I know these changes wouldn’t have happened without the difficulties as well. Don’t get me wrong, I’m so ready for things to settle down some, but one major lesson I hope to take away from this season is to not let myself get stuck in a rut or pattern of comfort that stops me from growing even further still.
I’ll just add some general thoughts about this newest season and how each of us is doing.
Rob is in the depths of summer camps and clinics, and planning ahead for what the fall season will look like for Huddle Up NYC. During my maternity leave it was so exciting to be a partner and collaborator with him on new ideas. What a dream it would be to get to partner with him more in the future.
Lucie is the most tender, loving big sister. She has been a thoughtful and willing helper. Sometimes we even have to tell her that it’s okay and that she doesn’t have to help, so that she can enjoy time playing. She is about to finish her final month of preschool, and then she will transition into Kindergarten. Even though she will be one of the youngest to enter kindergarten, not turning five until mid-December, I am hopeful that the school she will be in will prove to be a supportive and nurturing environment for her that helps her continue to thrive. She will be in an integrated classroom, which means she will have a General Ed teacher and a Special Ed teacher, and she will continue to receive Physical Therapy and Occupational Therapy at the school. It was decided that she will no longer be receiving Speech Therapy once she enters kindergarten and we are so thrilled by her amazing progress. Her school will only be a block away, and the start time is earlier than her preschool, so I am looking forward to being able to drop her off before work in the mornings while Rob will plan on picking her up each day.
I am back at work, and thankful to have such a supportive team. The first week was extra tough for me, but since then, I think Lucie has had the hardest time with the transition. When I get home, we really just have about an hour for dinner together as well as Lucie’s bath and bedtime routine. It’s so condensed and sometimes it’s hard for Lucie to express herself and how she’s feeling, especially near the end of the week when she’s extra tired. We’ve been trying to make sure mornings have plenty of time where we can focus on her and play with her, so that she feels that connection to us still.
Felicity is just the sweetest little 6 month old/ 4 month old adjusted age. We are getting more smiles every day, sometimes even little laughs. She is receiving Physical Therapy, Occupational Therapy and Special Instruction Therapy; all from therapists that worked with Lucie from when she was 6 months old to when she was 2 1/2. She is growing, but still quite tiny at just over 9 lbs, (most of which I think is in her cheeks, lol). All of the specialists that follow her are pleased with how she’s doing. Her eyes are improving, which is great! Her heart is unchanged, no better and no worse. So for now, her heart will continue to be treated through medication, although her Cardiologist expects she will require surgery sometime in the next year or two. Her Endocrinologists have made small tweaks to the mix of steroids she must take daily to manage her adrenal deficiency and she is continuing to do extremely well. As we have become more and more educated about her genetic condition, it is both helpful and nerve wracking at the same time. We’re praying that we can support her well, and not have to learn the hard way if and when we need to make adjustments to her medications during illnesses. If she doesn’t receive the cortisol her body needs to fight an illness through giving her additional does of her medicine, called “stress doeses”, she could quickly spiral into an adrenal crisis requiring hospitalization. Since this is a lifelong condition, not one she will grow out of, we know that as we all get more experience we will gain a greater level of comfort in helping her manage it. From what we have read, the first 3-5 years are the toughest because parents are still getting used to how to treat it during an illness (the most critical time). Day to day, while she remains healthy, it’s a breeze. She is strong, rolling over from her back to her tummy often, and preferring to sleep that way as much as we will let her. She loves to be held, and if she could be snuggled 24/7, she’d be in heaven. She might be the world’s greatest cuddler.
Thanks for reading along, here are some pictures from the last couple of months if you’d like to see.