Infusing Love: Finding Our Way

Families come in all shapes and sizes and it’s no surprise that those will special needs face a unique set of challenges. Raising my twin daughters while balancing the demands of various medical, neurological, and learning differences thrust me in to a endless game of special needs roulette. Predicting the outcome is impossible. 
Each of our children has their own path to independence. Watching them navigate it their own way can empower us to sit back and enjoy the process instead of comparing them to others and beating ourselves up with discontent when things take an unexpected turn. Unfortunately, we often don’t realize this until we have experienced it enough times and have a chance to look back and reflect. Once I started to realize this, I began to discover many small victories amongst what are insignificant milestones for most people.
For example, one of my daughter’s was having a difficult time learning to use the toilet.  I let myself feel pressured to have her “trained” by a certain age and felt stressed based on other people’s opinions. I knew I was doing everything I could and her twin sister had mastered it just fine. All I could do was keep trying to encourage her and wait for it to happen when she was ready. When she finally mastered this skill at 4 1/2 years old, we had a special “potty” party, at one of her favorite places, Chuck E. Cheese, complete with cake and balloons.  Today we look back and laugh about it.

So what does potty training have to do with bleeding disorders? Well, a lot. When you witness your son or daughter in pain, whether it’s from a bleed or emotional turmoil, your instinct is to access, treat and remove what’s causing it. The ability to distinguish when we need to step back and when our kids still need our help get tangled up when we let out heartstrings direct us. No parent wants to feel helpless; we think we can protect our own from all the upsets and disappointments in life. It’s often hard to ignore deep feelings of guilt, anxiety and rejection, and not take it personally when bad outcomes happen regardless of our desire to shield them.  Accepting and understanding what is in our control and what is not, continues to be one of the toughest challenges of all.
Parenting a child with special needs has had a major effect on my own self-esteem and my skills as a parent. Through the years, it has brought on a range of contradictory emotions. In many ways it has taught me to have loosen up and not take things so seriously. With each stage of development and new challenge, I strive to do my best at that moment and help my daughters develop their own strength and courage at the pace that is right for them. I can only pray my love and guidance has lead them in the right direction more times than not.
When you are still needed to assist your child with a skill that parents of “typical” children take for granted, priorities shift and things that we once believe mattered lose priority. What once worked can all of a sudden get complicated and we are forced to make tough decisions that may cause even more distress and heartache to our loved ones. Eventually we learn to let go of unrealistic expectations and try to imagine a new approach with a fresh perspective. We surrender to the fact that, things may not have gone the way we hoped and have faith things will work out in the end. Once a child masters a new skill or find out what inspires them, even if it takes longer than the anticipated or looks different than you expected, it’s a wonderful moment to witness.
When raising a child with a chronic bleeding disorder or a neurological difference anything can happen. A parent or caregiver knows that they are always one text or phone call from an emergency demanding their full attention. At times our ability to see the light at the end of the tunnel, and persevere, is additionally compromised by unforeseen circumstances, common illnesses or schedule changes that throw our momentum off track. We are all too familiar when emergencies arise, good intentions get sacrificed, and we are no longer able fulfill a promise we made on good faith. Even with the best planning and foresight, bleeds happen, meltdowns occur, and things do not end up going according to plan.
Parenting special needs kids may require a little more of our time, patience and creativity and let’s face it – we all have moments when we are running low on all three.  The beauty of this is that it is during these times some of the best moments come out of them.
Destinee lives in New Hampshire with her husband, Ken, and twin daughters, Madison and Morgan.
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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.