Before we had Meghan we were just a regular family, all of us relatively happy, no major health issues, just working, living, existing, challenges were there, but were not major ones. We were always on the go, always doing something, Tom or I were always taking one of our kids somewhere, the perpetual mom and pop taxi. I was working a lot, I had two different jobs when I was pregnant, fully intending on returning to both after Meghan was born. Tom was teaching in a school that he enjoyed, the children were sweet, they loved him. Everyone we knew was happy about our newest addition, they gave us baby showers and eagerly awaited her arrival. We got teased about not knowing what causes pregnancy, we got teased about our ages, but no one openly expressed concern in our social circle about their fears that we would have anything but a typical child, no one seemed to be worried except for me, because of dreams I had that as soon as Meghan was born, our lives would change forever.
A question we get all the time, did we know beforehand that Meghan had Down syndrome, and the answer is no, but we knew at my age, 41 at her birth (my birthday is in November) there was a risk. Despite the risk for Down syndrome, we refused amniocentesis, because we knew the test was not about knowing she had T-21 so we could be prepared to parent her, but instead was done to cover the OB's butts (malpractice) and to give the parents the choice of terminating the pregnancy. I will concede that there are a handful of OB's who truly want to help parents prepare, but I have spoken to hundreds of moms with prenatal diagnosis, and those doctors are seemingly rare. We opted for ultrasound monitoring instead, sure they miss things, but they are not invasive and are not likely to cause a miscarriage. We were not going to risk our infants life, and we were eagerly awaiting her arrival.
Meghan after her birth, despite all that going on in my mind, I loved her instantly, and my mama bear protective impulses kicked into high gear, no one had better ever try to hurt my daughter.
Meghan's birth story is on the pages section of this blog. I wanted to share a bit about it here, but what I really want to talk about is how Meghan changed our family...for the better.When she was an infant and growing slowly, having issues with her trachea, her heart defects and some pulmonary hypertension ( minor compared to some children with Ds, a tiny VSD, bit larger ASD and a PDA) it seemed like all we did was take her to doctors appointments, because of her trachealmalacia she had her immunizations done on the expedited schedule. instead of 2,4, and 6 months, they were given to her at 1,2 and 3 months. I wish we had not been so hasty and thoughtless about that, her poor immune system could not handle it and I believe it is part of the reason she developed an autoimmune disorder; alopecia aereata. Though it is sad to see her lose her hair over and over again, at least it is not life threatening and for that we are grateful.
Meghan had major hair loss on her right side but it is filing in, it is now falling out on the left again, and it goes on and on. She is also completely hairless except for the hair on her head, eyelashes and eyebrows, both of which have also fallen completely out along with her hair.
When Meghan was a tiny baby, we kept our hands washed all the time, they were dry and cracked because as soon as we applied lotion, we had to wash them again. No one who was sick was allowed in our home, Meghan was not allowed in day care, her trachealmalacia would worsen if she caught a cold. It could kill her if she got sick, we had to be very careful. Her stridor was so bad she terrified interns. We got tired of telling them she always had audible breathing. We took her to a teaching hospital and never seemed to see the same pediatrician twice, they also treated her like a lab experiment, bringing in doctors to check out her palmar crease or her epicanthal folds, it was making me angry.
I complained at home about my displeasure about the conduct of Meghan's team of doctors, my children heard most of it, as Tom was working. Julia came to an appointment with us because she thought we were off having fun without her... while they were busy checking the back of Meghan's head Julia said "She's not a lab rat you know" and told them loudly: "And her name is MEGHAN". Obviously I was complaining more than I realized, and Julia set them straight. I was still feeling emotionally raw at that point, and more timid than I normally was, even though they meant no harm, their behavior was insensitive, Julia saw what mommy was talking about and bless her heart, she wanted to pout a stop to it. I was happy to leave their practice and take Meghan to our primary care doctor, who was so much more positive and loving towards Meghan.
Meghan was and is a very determined little girl, she had to be just to get her little body to move, we had to teach her body to hold up her head, to rollover, sit, crawl, stand. Once she began to walk, her gross motor skills got better and better. Her overall development was different, slower, from her 46 chromosome-d siblings. Seeing her try and try again made me admire her gumption, no one could call her a quitter.
We also welcomed (usually with happiness, sometimes not) many early intervention therapists into our home. We joked that Meghan was the easiest child of our 6 because we had so many people helping us with her. We rarely had help in our other children's early years from family or friends, and having so much support with Meghan was a revelation for us. I could see that it was easier for my friends to have parents to fall back on to help with their kids, mine were gone and Tom's were too far away.
It was a gift but it also felt intrusive at times, the crux of therapy in the home is simply having people there several times a week who are not related to you in any way, there are clashes and uncomfortable moments. Some are ultra-professional and goal oriented and forget the child involved would not adhere to their rigid schedule, others were more open and caring in their approach. Finding people who are aligned with your parenting style can be a challenge too. I have never been able to abide therapists who try to force a child to comply. Want to see the definition of stubborn, try to force Meghan to do something, it is not pretty and the tantrums she can throw if you push tooo hard are explosive.
Meghan has had therapy since she was 4 months old, we took a break when I was getting chemotherapy and I was just too worn out to have them come in our home. Only one person has been with Meghan from the beginning, her speech therapist, who came when Meghan was nearly 2. There have been others who came, clashed and left, mostly OT's, who for some reason Meghan does not like, and who have been the most unbending and unreasonable of all the therapists we have had in our home. We are lucky to finally have one who can "go with the flow" with all three girls while stilll accomplishing her goals. You cannot be rigid when working with our trio. LOL
Learning to navigate with DDD personnel and services; Division of Developmental Disabilities and all the different people they have assigned to us as service coordinators has been a constant challenge. Some have been extraordinary and wonderful, some have been simply terrible. Thankfully we have someone wonderful now. I will talk about that on another day, as the state budget and how it affects services and attitudes of Arizona taxpayers deserves it's own post!
Suffice to say, all of us get PH D's in Down syndrome by the time our children enter school. If we did not know what to do when our children are born, we learn along the way, usually with help of parents who have older children, sometimes by making mistakes, but we emerge years later as completely different people than who were were when we first heard our child had Down syndrome.
How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly, (two shows I can barely stand now). She never thought she could be strong enough to adopt either...who was that girl?
Will conclude this tomorrow.