Tuesday, February 10

Mommy's first group talk

Mommy was given the opportunity to share our story of referral and use of Whatcom Center for Early Learning, to a church in Bellingham that funds this wonderful early intervention center.

She cried through her entire prepared speech! Yep, the whole thing. She is glad Miss Julie was there to be her usual incredible supportive and encouraging self. Here is what she had tried to say if any of you are interested:

Our story begins with a prenatal diagnosis of one of our twins having some type of a ‘trisomy chromosomal abnormality’ at week 20 of our pregnancy. This wasn’t something that had occurred before in our families, so we were confused. Not wanting to have any invasive testing, we opted to monitor our baby along with his healthy twin brother thru frequent ultrasound pictures. We were told that he probably had trisomy 13 or 18 and may only live a few hours. We prepared our hearts for the worse.

The boys were born at 37 weeks at St Joseph hospital. Tommy was twin A and after he was born was placed immediately on my chest and we fell in love! Liam was twin B and was born a footling breech. He was whisked away to oxygen and didn’t get that immediate mommy love. With only two Tylenols for pain relief I was happy my last childbirth labor was done!
Liam was on oxygen for most of the first day and was our greatest concern. But Tommy soon showed worrisome signs. Dr McGuiness sat on my bed to tell my husband, me and our families that Tommy probably had Down syndrome. Although we were thankful that we would have a longer lifetime with him, we knew that this diagnosis was difficult.

Tommy spent over a third of his first year of life at Children’s Hospital in Seattle. He was diagnosed with Hirschsprung’s disease which affects the motility in intestines. He lost one third of his colon to try and improve his efforts to poop. He also had open heart surgery at 6 months old to correct an AV canal. He had a hernia surgically repaired and had a Gtube placed for feedings. We have been in and out of hospitals many times over the two years. Local doctors have termed Tommy ‘medically complex’. He is on permanent pulmonary care and many daily medications. But besides all of his ‘care’ he is one sweet, smiley, loving, little boy. And his twin brother Liam is one active, happy, caring little boy.

Time passed after our surgeries with Tommy slowed down. We were contacted by the Opportunity Council to see if we were interested in services. Weeks turned to months and then we were notified that WCEL had space for us after being on a wait list.

As parents to four kids we have realized that education when they are very young is so important. But nowhere is such a responsibility for education more important, more heavy on our hearts, more involved than with a child that has a disability. Add onto that immense parental responsibility the feelings of guilt over the disability, anger, tiredness and confusion. We were not ‘together’ parents when our son was referred to WCEL. We were financially, emotionally and physically broken.

We weren’t down for long though. “Start early, get help and take charge” soon became our chant. When we first began at WCEL we were given an outstanding feeding therapist who came to our home once every other week. Then we added the parent-child therapeutic playgroups on Mondays. We enjoy many parent support sessions which include topics of communication with doctors and preschool transitions. We benefit from the coordination of family resources and are always asked what our family needs include. Our FRC has emotionally supported one tired mommy more than either of us would ever share! We then added occupational therapy thru WCEL in our home once every other week for Tommy and he began walking before his second birthday. After Liam was evaluated to have a speech delay, he began speech therapy sessions in our home every other week. The twins love their therapy sessions. The therapists have lots of games and make learning so much fun for the boys. They teach us as parents how to approach teaching our boys. Everyone at WCEL is encouraging. No one has a single answer or cure, rather they have paths, coordinated ideas, team approaches to teaching us as parents and our boys.

We recently added Sensational Toddlers therapeutic group therapy on Wednesdays to encourage Liam and Tommy’s sensory exploration. A great angle to get at speech and become more familiar with Liam’s senses.

“Parent to parent” informally has been a huge help to us also. We have learned so much from each parent. Tommy is more similar medically to children that have different diagnoses than Ds. So the chance to talk to a mom of a boy that has a Gtube before Tommy had his placed was so comforting. The opportunity to go to P2P swimming event and have a teenager with a Gtube show us how not to worry in the water was great. The chance to talk to a mom of a child on permanent pulmonary care and learn that an asthma inhaler for daycare is a portable solution to a nebulizer treatment was so beneficial to Tommy and us. Our teenagers benefited from the Super Sitter course offered through P2P and their skills have been a huge help in our family.
We have accessed every service at WCEL. And have been so humbled by their encouragement and positive attitudes. The blue house is amazing!

Looking back, we have been able to continue through these painful trials because we can stand strong in faith. It isn’t always easy. Some days we are homesick for our old lives before the twins and how easy each day was.

In the bible, it is Peter’s letter that becomes a survival manual for all who live in shattered dreams. Peter promises that trials are only temporary. Peter’s words urge us to live in confidence, patience and hope that come to all who place their care in God.
1 Peter 4:12-19.

We wouldn’t trade any of our four kids for anything. Each day is precious and we realize how fragile life is. We are enjoying the lifetimes we are given.

Tommy Adventures