Introducing a Brother

After many months away, I'm back to share about Ellie's past year of new experiences, developmental strides, and my own reflections as a mom. Four different drafts sit in a folder of things I've started to write but didn't publish. In a world inundated with words and information I often question the worth of sending another blog post to the Internet, but I always come back to the fact that this is one of my little platforms to remind myself and share with others just how wonderful and faithful the Lord has been in tangible ways to our family. What keeps me coming back is that this is His story, not mine.

In all honesty, I will confess that every time I return to the discipline of writing, I want to stop because it's painful. I feel compelled to apologize that my grief over Ellie's diagnosis is still an open wound and not a scar from the past. Is that too honest? Is it still honoring to the Lord and to my daughter that I continue to ache over the missing segment of her DNA?

As I write, tears abound. I couldn't tell you which tear drop springs from joyful gratitude and which from the pain of chronic grief, but that's probably appropriate given the fact that we live on this broken side of eternity. Hope always prevails, but disability is still so hard and sad. Laura Wifler recently published an ebook, To the Cross I Cling, written for moms walking through a special needs diagnosis. If you're a SN parent, you need to read it! I've never wept so much through a book. In it she writes,

It’s been more than two years since diagnosis, and it’s starting to settle in that there is not a day to come that I won’t be a little bit sad.

This resonates with me so deeply. As I share the following praises and challenges, I hope that my mixed tone of joy and sorrow won't seem incongruent but actually captures our experiences authentically and accurately. Because there is so much to say from the past year, I'll be publishing a few different blogs over the next several days in conjunction with 5p- Awareness Week. I hope they will be an encouragement and an informative glance into a trial you may not experience firsthand.

The first major change in our family since my last update is the addition of a son and brother, Christopher Edward Delposen III! He was born in June and continues to be such a blessing to our family. Based on Ellie's demonstrated love for children leading up to his birth, we expected her to love him enthusiastically, and that expectation was certainly realized when we brought him home. For the first couple of weeks, she was full of pure, loud excitement. She expressed herself with happy squeals, wiggly hands, and gentle kisses for the baby on his head. We are so proud of how she handled the adjustment.

Photo by Brooke Hettinga Photography

Watching the children interact as Christopher has become more aware and now mobile has been delightful. Several months ago, Ellie loved to share her toys by handing them to the baby in his bouncer. He, in turn, loved watching his big sister play and giggled when she would come close to greet him. Now that he is crawling, pulling up, and in some ways probably stronger than Ellie, the roles have actually suddenly switched.

When just a few months ago I was teaching Ellie to be gentle with Christopher, now we are constantly intervening so that he does not hurt her. We are trying to teach Ellie how to defend herself from her ten-month-old brother, and (with little success so far) teaching him to be gentle with her. This has brought to mind more frequently that "normally" the big kid would be standing and walking around out of baby's reach, but Ellie continues to sit on the ground and crawl, making her little pigtails much more yank-able to little Christopher, and her more passive personality hasn't always been the best defense to his intensity.

Since the day we learned that Christopher was a boy, both grandmothers have called him Ellie's defender. I'm emotionally ready to get to that point and not need to worry that when I turn my back he might be hurting her. Ellie has handled everything so well, and now Chris and I are trying to build her confidence to hold her own with a rough and tough little boy. The lack of gentleness aside, I look forward with great anticipation to the growth of their friendship and also seeing how they challenge one another to grow through playing together. The reality is that soon Christopher with surpass Ellie in terms of development, and when this happens I'm sure I will have lots to say about how thankful I am for his growth but also how sad I am for the brokenness this reveals. Many have said that maybe when he walks it will encourage her to walk, and I agree with this hope. But I still hope and wish that she might go first.

Having our second baby has been deeply joyful and so much easier than the first time around. The difference is so drastic that it can actually be bittersweet when we reflect on our early months with Ellie. As first-time parents, we expected things to be difficult - and they were. Now that we have the experience of a typical baby under our belts, we have even more awareness of just how broken Ellie's early days, weeks, and months really were. While we have the added challenge of also caring for a toddler during this infant stage, it is still more manageable than the stressful days of spending all of my energy trying to keep Ellie fed. I'm also just genuinely grateful that babies are typically designed to know how to feed right away; that first successful latch seconds after he was born was a very redemptive moment for me.

All in all, we really believed that a sibling would be a gift to Ellie and we hold this to be true for her and for all of us. Ellie and Christopher are opposites in just about every way; girl and boy, weak and strong, great sleeper and awful sleeper, eating struggles and eating champion, snuggly and wiggly, daddy's girl and momma's boy. Their unique personalities and strengths truly enhance my ability to appreciate each of them for who God has made them to be, different from one another but altogether wonderful. It's incredibly sweet to see Ellie rock Christopher's car seat in big sister manner, and I love to watch Christopher follow Ellie around and demonstrate that he misses her when she's napping or otherwise not present.

A dull ache of sadness may be part of our story for years to come, but my hope exceeds my grief in every circumstance. This is because of Christ Jesus. The prophet Isaiah writes of his sacrifice for us,

Surely he has borne our griefs

and carried our sorrows;

yet we esteemed him stricken,

smitten by God, and afflicted.

But he was pierced for our transgressions;

he was crushed for our iniquities;

upon him was the chastisement that brought us peace,

and with his wounds we are healed.

Isaiah 53:4-6

This is the comfort of all comforts. Because Christ carried the weight of all sin and suffering, I can look to the past at his finished work on the cross for present peace and future glory. This glory will far outweigh these light and momentary afflictions (2 Corinthians 4:17). Hallelujah, what a Savior! My prayer is that each reader would also know this hope and this Savior personally, in times of grief and in times of rejoicing.

Join us in praising God for new life and how the gift of one tiny person enriches the lives of so many others! Please consider praying for our growing family in the following ways:

• Gentleness and affection for one another between our children

• Continued growth and development for each child that will encourage one another and not become a source of frustration

• Wisdom and grace for us parents to shepherd the hearts of our children in the unique ways each of them need

I'll be back very soon with more reflections on therapy and Ellie's intensity program, feeding, the transition to three years old, toddler discipleship, and spiritual musings. Thanks for giving your time by reading to understand life with disability.