Today is both your fourth and first birthday. It is the celebration of the beginning of the fourth year of your life and the first birthday you have celebrated at home in my arms. Words fall completely short when I try to express how much I love you and how incredibly blessed I am to call you my son. Hearing you call me mommy (even when you’re waking me up in the middle of the night or when you’re mad and yelling at me) is the greatest privilege and honor of my life and still sometimes brings tears of joy to my eyes. Seeing you splash in the water today, drive your new (motorized) car and run around with your bubble lawnmower is a gift I’ll always remember. I love your spunk, your passion for the things you love (special people, the color orange, construction vehicles and Moana & Blippi mostly), your resilience, the way you don’t let EB hold you back, your sense of humor, and your dancing skills. Every agonizing day of waiting to hold you in my arms was totally and completely worth it. Every heart-wrenching moment of having to cause you pain to take care of your wounds is not quite so bad when you thank me for making boo boos “really better”. EB is exhausting and painful for both of us. But YOU, my babu, you are worth every single bit. You are truly my greatest adventure and the light and love of my life.
Happy 4th birthday, my Salim Babu. I am so grateful for you and the gift of celebrating your first birthday home. I look forward to not only all the birthdays to come, but each and every day of loving you.
I often think of what it must have been like to give birth to Salim, learning so shortly after he arrived that he had the same terrible condition that took your first baby from you. What must it have been like to be both overjoyed to have a child and at the very same time, know in the back of your mind that your circumstances prevent you from giving him a full, healthy life?
I cannot begin to imagine the agony involved in making the decision to bring your sweet boy, your first baby to live beyond one day old, to an orphanage and entrusting him into the care of others. I also cannot imagine a more selfless act. You could have kept him at home and enjoyed the time you had with him. You could have savored the snuggles and cuddles with your baby. But time would have been limited. He simply would not have been able to survive, and he would have spent each day he did in pain with little you could do about it. Circumstances beyond your control made it impossible to give him the medical care he needed. Love? Absolutely. I know that you loved him, and continue to love him, so very much. Love is powerful, but it cannot make up for proper medical care with a condition like EB. Bringing him to an impoverished government orphanage was not an ideal option, but it was all you had. And it was hope.
You are one of the strongest people I have ever had the privilege of meeting. You sacrificed a great deal out of love for your baby. You looked into those deep, beautiful brown eyes and had the strength to admit that there were things you could not give him. You gave him the gift of a fighting chance. Thanks to your sacrifice, love, prayers, and endless hope, the little baby you entrusted into the care of others is now a thriving, joyful three year old little boy.
I will forever hold you in my heart and consider you family. Our son is blessed to have the love of two mothers. He will grow up knowing that he has a large, love-filled family, part of which is in America and part of which is in India. All of whom love him dearly. As I care for his wounds, hold him when he cries, listen to his giggle and bear witness to each new milestone, my heart simultaneously overflows with gratitude for the gift of being his mother and hurts and aches for you. I know you long to do these things as well. My words will never be adequate to thank you for the depth of your sacrifice and the privilege of raising this precious child. It is my prayer and hope each day that I do you justice and honor your love for him.
Until I see you again, I will hold you closely in my heart. I will tell our son about you, show him our photos together and make sure he knows how much he is loved. I will give him an extra kiss each night for you. Above all, I will do my best to raise him to love others as sacrificially and deeply as you have loved him.
I have received more messages and been tagged in more comments than I can count, let alone respond to, asking for ways that people can support and bless us and some of the things that Salim needs for his care. Instead of responding to all of the individual inquires, I’ve put together this list. Most things are available on our Amazon Wish List (see below), but not all. For things not on our wish list, please email firstname.lastname@example.org for a shipping address.
Please know that nothing is expected and everything, including your prayers and encouraging words, is extremely appreciated. We’ve been blessed so much through this entire journey and are so grateful!
Lots of our wishes are available on Amazon and have been complied on our Amazon Wish List. If you purchase something off this list it will automatically ship to our address. Please be sure to include your name so we know who it is from! 🙂
Squeasy Gear(used for tube feedings, makes feeds mess-free and super easy! We use all the sizes! These are on our Amazon Wish List too but if you order from the site directly you can use the code FEEDING25 for a 25% discount!) – http://squeasygear.com
Tubifast Garments (we use the shirts, pants and gloves)
Over the counter supplies: Desitin (zinc oxide), coconut oil, bactroban, hand sanitizer (alcohol free for Salim), alcohol swabs to clean supplies, gauze pads to drain blisters, Aquaphor, Beauty Counter body butter (see below)
Specialized supplies: Mepilex Transfer, Mepilex Lite, Restore Flex, 25 gauge needles to drain blisters, Tubifast (red and green line), Conco gauze (1 inch, 3 inch and 4 inch)
Shampoo, conditioner and body wash – either the regular or kids’ versions are great
Kickee Pants Clothing
Collared shirts – These are his FAVORITE! He loves wearing his “fancy shirts” 🙂
Size 4T and above
Other shirts and tops – He wears Kickee shirts almost exclusively (including tops to PJ sets as normal shirts, cause why the heck not?) because they are so soft and sometimes more importantly, so stretchy! It can be hard to get clothes over his head without shearing the skin off of his nose, cheeks and ears.
Size: He can wear 3T – size 5 right now, the bigger the better
Pants and shorts – These aren’t quite as vital as tops are since his legs and feet are fully bandaged, but he still loves his soft kickee bottoms!
Size: 2T – 3T right now (he’s much smaller on the bottom!)
PJs – Honestly, he wears Kickee PJs are regular clothes all the time! If PJ sets, shorts are best since he gets overheated so quickly (so many bandages!). If one piece, he can’t do zippers. Aside from that, anything is appreciated!
Size: Varies, but the bigger the better. Definitely no smaller than 3T
Last step state-side is COMPLETE! I have a court date! I will be getting on a plane at the end of February to travel to my Chai-loving little boy!
I am planning for about 3-4 weeks in India. Butterfly S will be coming into my custody near the beginning of the trip and we will spend our time in India getting to know each other, navigating different appointments to do paperwork, and finalizing the adoption!
Packing to be in India for a month is not easy…packing to be in India for a month with a child with EB is NO JOKE. EB complicates everything and there is so much more to think through. In addition, figuring out how to tube feed on the go and possibly even on the flight home adds another layer of complication. But my butterfly is so worth it.
Many have asked about ways they can support us as it gets closer to time to bring S home! We have been incredibly blessed so far and are so grateful to everyone has supported us! There are a few things remaining on S’s Amazon Wish List – mostly all things related to his EB and feeding tube. Please feel no obligation…I share this for those who have asked and with no expectation 🙂
The best way that you can support us is in prayer. I have shared my top 3 requests below. Be sure to join our Facebook Group for the most up-to-date requests and updates.
Top 3 Prayer Requests
For S’s heart as his foster home does their best to prepare him for adoption. It is going to be an incredibly difficult transition for him – I am a stranger and will be taking him away from all he has ever known. Having to inflict pain on him during dressing changes while we form an attachment will make things even harder.
For S’s foster brothers/sisters and his caregivers – they love him very much and I know that even though they are excited to see him join his forever family, they will miss seeing him on a daily basis.
For my heart as I make final preparations, get things in order for his insurance coverage, in-home nursing care, childcare and other things that could be confirmed until right before court, wrap things up with clients and resist the urge to hop on a plane right now 🙂
Thank you for your encouragement, love and prayer throughout this entire process! We have been incredibly blessed by friends, family and even people we have yet to meet. So many communities have rallied around us and it’s been incredibly beautiful to witness…we are so grateful! I will try to post at least one more time before I get on that plane 🙂
NOC…three little letters that mean so much! NOC is “No Objection Certificate”, which literally means that India has no objection to me adopting my butterfly! This is the last layer of approval before court, which I will go to India for! It will take a little bit for me to get a court date, and I hope to travel to India in March. I have decided to stay in India throughout the duration of the process (as opposed to going for court, coming back home, and going back for pick up). I will be there for about three to four weeks with my little guy in my custody for the majority of that time. As I prepare for travel, I am working hard to finish up S’s room! I get to send him a photo book to introduce him to his mama and new home now that I’ve received NOC. He is in the care of wonderful, loving foster parents and ayahs who will read his book to him, show him all the photos, and prepare him for adoption to the best of their abilities. It’s a huge transition that he will never be fully ready for, but I rest a bit easier knowing that he is receiving the best possible care while waiting for his mama.
I have anxiously been awaiting NOC and it makes this all feel so much more real! My agency, WACAP, has been absolutely incredible and have fought for my son like he’s their own. They have been urging India to expedite my case due to the medical needs of a child with EB, which I am so thankful for. I am also very thankful for the wonderful community of people who have rallied around me and my son! Old friends, new friends, and people I have yet to meet have all been huge supports throughout this entire, lengthy process. I am especially grateful for the “RTP Desi Moms” group – a group of Indian moms in my area who have been so helpful and encouraging! I am so grateful to have a community of people who can help me keep my butterfly connected to his Indian roots.
I have received many messages asking me how they can be involved and help. I have set up an Amazon Wish List for S (I cannot share his full name publicly until after we’ve passed court) with some needs and a few wants. I’m also always grateful for EB and feeding tube supply donations (especially for my time fostering in India!). Most of all though, I value your encouraging words and prayers. This is not an easy process and it is not easy to be so far away from your child day after day with little to be done about it. I’ve been actively in process since May 2017, which is honestly quite short compared to some India families, but S has held a very special place in my heart since long before then.
Stay tuned for more exciting updates as travel gets closer! The best place to get the most up-to-date information is my private facebook group. You’ll need to request to join, but go ahead and do so and I’ll approve you as soon as possible! Thanks for being a special part of my journey!
Almost exactly two years ago I was grieving the loss of an incredible, brave, kind little boy named Anton. Anton had EB and was adopted from Russia, and he was a close friend of my bud Jonah and the Williams family. He passed away shortly before his 6th birthday in December of 2015. My method of choice for processing and working out hard things is writing, so I began to write in hopes of beginning to process my heartache over Anton and my unconventional relationship with the EB community. Earlier tonight I stumbled upon what I wrote and re-reading it gave me goosebumps. Who would have thought that a mere two years later I would re-read these words while in the process of adopting my butterfly?
Over the last 6.5 years, since I first learned of EB through Jonah, I have asked myself the same question so many times: WHY does this have such a profound impact on me? I have no reason to care so passionately about the EB community. I do not have EB. I do not have any family members who have EB. It would be easy and even logical to be saddened to learn of this disorder and then move on and not think much else about it. And I tried…but I couldn’t. I was first asked to pray for Jonah by my friend Andrew Boyd at a Young Life prayer gathering. He had just been diagnosed with EB and no one was sure if he was going to make it. He was constantly on my mind through the next few weeks. When he was about 3 months old I started nannying for an infant who just happened to be born on the EXACT SAME DAY as Jonah. While I went through the daily routines of infant care with baby Olivia, I couldn’t stop thinking of what it would be like if Olivia had EB and what it must be like for Jonah, Matt, and Patrice. I found myself praying without ceasing – when I changed Olivia’s diaper, I prayed for Jonah’s diaper and dressing changes. When I fed Olivia, I prayed for Jonah’s feedings, and so on. I felt so very deeply from the beginning. And Jonah has been a HUGE part of my life ever since. I’ve hung out with him through many dressing changes and baths and lanced some of his blisters. He has been, hands down, one of the biggest motivators for me in my own health battles and recovery. And over time my involvement moved beyond a love solely for Jonah and his family to the EB community as a whole. I joined forces with Patrice in spearheading Jogging for Jonah, and in that time I have fallen in love with children I’ve never met and my heart has broken hearing their stories. I’ve had conversations with parents all over the world about how EB has impacted their lives for JFJ’s “Reasons to Hope” displays. I’ve prayed countless prayers and shed countless tears for them. BUT WHY? Yes, EB is heart-breaking and devastating, but many diseases and disorders are. I have heard of many and read many personal stories. Yet none have struck me in this same way. I have come to one conclusion: GOD IS DOING BIG THINGS. EB will forever be a part of my life. Perhaps Jesus will lead me to adopt a child with EB one day. Or perhaps my involvement will continue to remain in advocacy and fundraising. But I will not stop. God has a different purpose and calling for each of us in life, and I firmly believe that He intended me to be a part of this community. He has orchestrated an insurmountable number of details in order for that to be the case. It is hard. It means that I weep over children like Anton and grieve their losses. I feel deeply, but I move fiercely. I fight passionately. I love strongly. For Jonah, for Anton, and for so many more. And I will not stop. I refuse.
God was doing big things then, and He still is. He has been preparing me for this journey long before it began. I’ve rejoiced and celebrated, and I’ve mourned and wept. And He has been in it all. He has been present in my joy and present in my tears, intricately weaving them all together to lead me to my boy.
Jonah, Vanessa & Anton
As the second anniversary of Anton leaving earth to be with Jesus approaches, please hold the Delgado family (Jason, Vanessa, Kenya & Judah) in your prayers. I know they rejoice that Anton is free of pain and in the arms of Christ, but they still carry the pain of his physical absence with them every day ❤