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!
12 comments:
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!
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.
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.
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!
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...
I love each chapter of this story.
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.
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!!
What an awesome story! He's such a cutie.
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.
((hugs))
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. :(
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!
:)
Just got done reading the chapetrs on your little David. Thank you for sharing. Reaading this brought back soooooooo many feelings and memories of my little guy (not so little any more now 24 yrs old).
My little guy was diagnosed with severe crebral palsy when he was 5 months old. Thought it was the end of everything as I knew it - not so =) =)
He too was whisked away to the NICU as soon as he was born. Something about low heart rate. Hooked up to wires, bells and whistles and I was so afraid of holding him. So different from my first son's birth.
Long story short little guy is the joy of our ives and always brings a smile to the faces of people he comes in contact with.
The challlenges are never ending but at the end of the day the only things that matters is the love in his eyes, laughter in his heart and the BIG SMILE ON HIS FACE!!!!
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