Lisa Leonard Designs

Chapter 5, The clouds lift

May 17th | older posts

Adjusting to bringing your newborn home is exhausting, but a newborn with special needs is even more difficult. The first few months we were just getting by. We were learning how to care for David, how to feed him and what his preferences were. I had at least two doctor appointments every week so that we could check his hearing, sight, weight gain, bone structure and on and on.

On a Monday morning when David was a few months old, I woke up, got out of bed and the weirdest thing happened. I felt like myself again. I can’t really explain it, except to say that for me, the clouds lifted. I don’t know if the shock wore off or the baby blues passed or what, but I felt like me again. God had been bringing me to a place of accepting the pain and letting it BE. In that place I was so surprised to find JOY! It still took a lot of courage to go to the grocery store and “face the world” but somehow I was back to myself. It was a relief to feel normal again.

David was getting into a routine and started sleeping through the night. He was smiley and grasping for toys. At three months, he had surgery to correct a malrotation of the intestine (the problem had caused projectile vomiting) and was a much happier boy after the procedure. We loved snuggling with our tiny guy and getting him to smile. We introduced him to rice cereal and baby food which he loved. We worked for hours each day teaching him to eat and drink by mouth.

I started a new job as a full inclusion specialist for the local school district. One morning I was standing in a kindergarten classroom reading a poem entitled “my ten fingers” and broke down crying. I was healing slowly but the pain was still fresh. Steve had Mondays off and would watch David and my sister Susan would watch him on Wednesdays. My days at home filled up with therapy, housekeeping, errands and I started making jewelry. It wan’t the life we had planned (cute house with a picket fence, two kids and a dog) but it was starting to feel like maybe this crazy thing could work after all. The next few months seemed like years. Steve and I quickly felt the need to add to our family. We had barely discussed it when we found out I was pregnant again. David was only 10 months old!

25 Responses

  1. Kristen Borland says:

    wow! each chapter is so neat. i am amazed by you guys constantly. i think i would go insane going to the doctor that often, but i guess you don’t know what you can handle until you are doing it. love the baby david pictures!

    love you!

  2. Karen says:

    Very cute photo! It’s great to see that you were able to transition David to oral feeds…maybe there’s hope for our little guy. It’s slow going so far!
    I still don’t feel like my normal self. I’m not sure that I ever will again.

  3. lisa says:

    feeding by mouth started out really slow for us as well. give it time. also, i taught severly handicapped kiddos for 4 years before david came along so i felt like i had processed a lot of the crappola before he was born. you are still in the thick of it–just one year. still fresh.

  4. michele says:

    I love hearing David’s story again! Remember when we went to lunch while David was in the hospital for his surgery? I remember his bed and how little he seemed in that big hospital room. You guys were so brave!

  5. michele says:

    Oh, and I remember when you started to seem like yourself again…making “Lisa” jokes and comments. Remember when you babysat Katrina for me and you had the little chair set up in front of the TV with the remote and some popcorn? That was so funny…

  6. erika says:

    I love each chapter of this story.

  7. Kell says:

    I love to read your next chapters about David. I can relate to them so much. I have begun to feel the joy coming back to my life and feel incredibly guilty that I have been so depressed when I have been given the most amazing little boy in the world. I am actually looking forward to spending my life with him and looking after him. It’s so overwhelming at first but I couldn’t change him if I had the chance. He’s Sonny and he is how is is.

  8. Misty says:

    thank you so much for posting about david. our story is so similar. he i wonderful, and your site has helped me in so many ways! thank you for being out there, and being the beautiful person that you are. give david and matty a squeeze from mason and me!!

  9. Melissa. says:

    What an awesome story! He’s such a cutie.

  10. Karen (Pediascribe) says:

    I found you through Simple Mom (her jewelry giveaway). I’ve read through your whole story with David and I enjoyed seeing how you progressed through each phase–from the shock and denial, to having the clouds lift and accepting. I’m sure your story is a blessing to others who find themselves in a similar situation.
    p.s. I was an ICU nurse at a Children’s Hospital. Our unit was for babies under the age of two with congenital abnormalities. I’m saddened by how you were treated in the hospital. It just shouldn’t be that way. :(

  11. Heidi @ GGIP says:

    Hi. Someone who reads my blog recommended that I come visit here. My newborn son has CdLS and is still hospitalized after over 2 months.

    I can totally relate to your story, especially the prenatal part. I knew about my baby’s arm anomalies (as they call it in ultrasound-speak) at 13 weeks gestation.

    Anyhow, I’m going to get you on my bloglines so I can keep up with your story.

    I think I might have been here once before to look at your jewelry. It looks VERY familiar!


  12. I actually just bought a necklace from you and then found your/David’s story! We too have been blessed with a little guy with special needs. He was born with Spina Bifida.

    We found out at 36 weeks (just enough time to get prepared, but still enjoy most of the pregnancy. Blake was born July 2, 2002 (we share a special day)! We were told by doctors that he would never walk, run, enjoy normal activities and so on. Blake not only walks unassisted, but runs too. An answer to our prayers. We still deal with many disabilities that are considered what I call “socially unaccepted” by many people but we are just open about his condition and that really helps with school (he has no bladder or bowel control and we deal with some issues similar to autism). But Blake is mainstreamed at school.

    I cried off and on the first two years of Blake’s life, so worried about his future. Then I realized that THIS life was going to be normal for us and I started enjoying every minute. Life was full of weekly visits by nurses and therapy appointments and so forth…you know the drill. But life was good and we finally felt “normal’.

    I hope someone has shared with you “Welcome to Holland” by Emily Perl Kingsley. It brought great peace to me when trying to explain or share what it felt like raising such a special child.

    You know we call Blake our little miracle from God, and we let Kaia, his older sister, who is so wonderful with him, know regularly that she is our gift from God. Enjoy the journey and the tulips! However, difficult the journey might feel some days, remember, WE are the lucky ones.

  13. tracy penton says:

    your story brings tears to my eyes as I think of the arrival of our fourth and what a surprise she was. we found her in her crib the day after bringing her home and she was purple almost black with foam coming out of her mouth. we learned after many traumatic episodes that she was aspirating silently and had swallowing issues. she too had a g tube and surgery to correct the valve that stayed open allowing feedings to come up. she has not outgrown her swallowing problem and has therapy 2x a week
    for it. we found the docs in dallas to be excellent. the hospitals here are outstanding. she is here with us today because of them.

    my sisters bought me a piece of your jewelry from someone in the plano area and i love it. it is so special to me. my neighbor and friend wants the same piece i have. i am trying to work out a way to pay for it for all the things she has done to help us through our hard times. we have many medical bills from all of this.

    i think it is such a blessing that you can make this jewelry and be home with your family. i am searching for something to meet our needs and hope i find it soon.

    god bless you and your family and especially david.

  14. I found your jewelry site from the CdLS magazine. Thank you for sharing your story and your talent. I too have a son with CdLS although he isn’t here physically with me anymore…he is still with me. There is so much that was similar with our stories in the beginning, it makes me teary. I love seeing the photos of David. He is absolutely beautiful! I will be back one day soon to shop. :) Thank you! Jacqui

  15. Jacquelyn says:

    I have a brother who had CdLS. He passed at 32 years of age due to speticimia from a bleeding ulcer. Hospital error sadly. I have never met another person with CdLS in my life time. He lived a very healthy and happy life. He also was able to communicate very well using sign language and some words. I came upon your webpage saw your son and my mouth dropped as he is the spitting image of my brother. Your sons are both adorable! and luv’ the jewelry! I will be ordeing some! Blessings to you.

  16. Tabitha says:

    I saw the picture of your son and felt compelled to write you. I’m touched and moved by his spirit and the love you guys hold for him as a family. I was born with deformities and because of my families love and support I can stand tall.

    Bless You

  17. Carolyn says:

    I too found your jewerly in the CDLS magazine and love your website! I will definitely be ordering the joy is found in the unexpected necklace! My son is 2 and has CDLS as well. I love to see pics of your family and pictures of Halloween. I could totally relate to your story while reading your chapters of David’s life. We were in the Nicu for a month and put a g-tube in. Finnegan is my son’s name and he still doesn’t eat anything orally. I feel completely blessed to have Finn in our lives. He has taught us to appreciate the small successes and the simple things in life. You have obviously found the same appreciation which has encouraged you to follow your own passion and creativity. Your jewerly is beautiful and unique and that is a tribute to your sons!

  18. Jill says:

    I was getting my hair done at the salon and just happened to go to the very back of the magazine,and the picture of the square tags caught my eyes. I ripped out the page, and as soon as i got home looked it up. Your site was so much more than i expected, not only do you have beautiful jewelry you story is amazing. To open up to strangers who visit your site and give a little piece of your life it inspiring. Your son is beautiful and is lucky to be a part of your lovely family. He is a blessing. By the way i will be ording soon it is going to take me a few days to decide what i want!. If i spelled any words wrong sorry I am a horrible speller:)

  19. megan says:

    I could not have come across your website and your story at a better time. I read these postings yesterday afternoon, just before taking my older daughter (4) to yet another speech therapy appointment. My younger daughter (15 months) is also presently seeing a SaLT for feeding therapy. Every week consists of more and more doctor appointments and more and more therapy appointments for both girls, and I was feeling very overwhelmed and sorry for myself until I came across your story. You have handled your child’s needs with such grace, it is really inspiring. Your children are beautiful (and so is your jewelry, btw!). Thank you for sharing your story.

  20. amy beckey says:

    what a sweet story. thank you for sharing and i’m so glad i read it. he looks like the sweetest boy in all the pictures and i’m sure he is! what a blessing

  21. bethany says:

    Hello, my name is Bethany and I found your website through Nathan and Tricia Lawrenson. ( I am good friends with them and I loved the jewelry that you made for Tric and Gywn.
    I’m a new mama since November to a beautiful baby girl. I told my husband that I wanted a piece of jewelry like Tric’s.
    I looked you up online and discovered your story…David’s story. I have to admit that I haven’t experienced anything like what you went through. But, the way you transparently shared your story was beautiful and encouraging. Full of life and joy. I loved it. May God bless you and your family for sharing what He has done in your lives with others.

  22. What a wonderful and life affirming story of the birth of your son. One of my children has autism and I completely understand the range of emotions you were feeling and probably continue to feel as you face the joys and challenges of raising a child with special needs. Thank you.

  23. Jovita says:

    What an amazing story!
    I found your website thru a MOM FINDS blog.
    She was giving away $100 to your jewelry.
    And well, guess what!?
    I commented, and I was the lucky winner!

    You little boy is so blessed to have parents like you! :)

    I still cannot decide what to get yet!

  24. Kimberly Townsend says:

    It is a true blessing to have children isn’t it? I came across your site by accident while looking for job chart ideas for my preschool classroom. I was compelled to take a little look inside. I am fascinated by people’s ability to depict what is so important to me in pictures…sheer happiness with just “BEING”! This is yet another reminder of why I am a teacher. Your blog page is soo wonderful and even made me think back to when I was younger, (38). Beautiful and many blessings to ya. Thanks for inviting the world into your space. I am truly inspired! It’s amazing what a few pictures can do. :)

  25. Love it! Absolutely! Life with special needs GOES ON! And there is: JOY! Had read parts of your story but not this one. Yay!

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