I am a Mother to 9, soon to be 11, bright beautiful children and young adults. My journey with cystic fibrosis began very differently than most. I have been a foster / adoptive mom for many children over the last 15 years. It was through these amazing years that I met my son, Christian. Christian was 16 months old when I first met him. He was not able to walk, he was non-verbal, had seizures all day every day and he had cystic fibrosis.
He came to us for respite, so his foster parents could go on vacation. Well, we fell in love with him and when I took him home I asked, “when he is free for adoption? I want him.” The time to adopt wasn’t long. He was in a group home for people with disabilities and they wanted us to start taking him on weekends to see if we really wanted him. The first weekend we went, we fell in love all over again. He was 18 months old and still not able to walk. We took him outside to play on the grass and to play in a wagon. He loved it and so did we. Sunday, the day we had to take him home, my four-year-old daughter cried all the way home. She didn’t want to leave him at “that house”. They had us put him in a crib with no toys, and nothing to play with. We went home and called the department of social services and said, “We will pick him up next week and he will stay with us.” We had no clue really the amount of work it was going to take, but we were willing to do it.
The drives to the cystic fibrosis clinic are over 2 hours one way, and we went monthly at first. I’m a nurse and I choose to give up my job so we could love and take care of Christian.
Giving up work was a huge blow for me because I felt like I lost my identity. I felt I was no longer any use. Now I was “just a mom”, a very tired mom. The treatments were frequent and he was having 100 seizures a day even on meds. He required total care. learning the enzymes is still a huge struggle but we gain weight, then we lose the weight and then gain again. We love him and never ever doubt our choices as a family.
When Christian was three, his biological parents were pregnant again and we knew without a doubt that if this baby had CF he or she would come live we us. We had 5 children at home at this point and we knew we could do it as a family. In October my beautiful daughter Jacqueline was born and she indeed had CF. At three days old she had an intestinal blockage and had emergency surgery. My trips to the NICU began. I drove 4 1/2 hours round trip to start the bonding process. I spent hours with her on my chest holding, talking and loving on her. At 2 months and 10 days old she came home and at 13 months old she became ours forever.
Jackie had another blockage at age 5 and had more intestine removed. We almost lost her. We are very blessed that she has never had a CF exacerbation that has landed her in the hospital. She is a bright fun 9 year old. She has high functioning autism, loves animals, and loves her family.
Christian is almost 13. He is non-verbal autistic. He has been off seizure meds for 6 years and is seizure-free. He has had 2 exacerbations in which he was hospitalized. When this happens it takes me hours away for weeks at a time. These times have been the hardest on our family. I am torn between needing to be with him and my children at home. My husband works nights and sleeps days. When we get discharged we come home with a PICC line that lakes several hours two times a day to continue the antibiotics.
We now have 8 children at home. I am still not working full time as a nurse, only in the summer at camps, so I can bring the kids. I am a volunteer critical care EMT and firefighter, and I home school 5 children. Some days are really hard and some are easy. We have no real support. We have found a great church that we attend weekly. This last time in the hospital they helped with meals for dinner.
I went to the “We Walk Together” Mothers Retreat the first year they had it. I had just lost my 22-year-old son to suicide 3 months prior and I felt like I was in a very dark place. The retreat was a great place for me to go to. I flew from NY to Montana. It was the first time I ever left my kids. I didn’t talk much, but I cried a lot, I didn’t reach out, but I listened. The second-year I was not able to go, but the third year I saved for my travel costs because I was determined to go. I went, and it was so nice to be back around people that go through some of the things I go through on a daily basis. I don’t reach out to many but I listen. I reach out to some and I feel unjudged. I feel like I can rest and be me, not just the mom of two CF kids and many others, but just jess for a couple of days. That is the best part of it.
I feel that without God as my guidance and the CF moms that I have met at the retreat, some days may not be bearable. I am very blessed to have been asked to be the Mother Of The Month and I pray that maybe in some small way my story will encourage many of you to get through just one thing at a time. I thank you all for loving me and praying for me. Most importantly I thank you, Ginny, for the moms retreat and what you have done for not only the moms of Montana but for this mom of NY
